ICS I

I NSTITUTE FOR C LINICAL S Y S T E M S I M P ROV E M E N T

Health Care Guideline:

Palliative Care

Third Edition November 2009
The information contained in this ICSI Health Care Guideline is intended primarily for health professionals and the following expert audiences: • • • • • • • • physicians, nurses, and other health care professional and provider organizations; health plans, health systems, health care organizations, hospitals and integrated health care delivery systems; health care teaching institutions; health care information technology departments; medical specialty and professional societies; researchers; federal, state and local government health care policy makers and specialists; and employee benefit managers.

This ICSI Health Care Guideline should not be construed as medical advice or medical opinion related to any specific facts or circumstances. If you are not one of the expert audiences listed above you are urged to consult a health care professional regarding your own situation and any specific medical questions you may have. In addition, you should seek assistance from a health care professional in interpreting this ICSI Health Care Guideline and applying it in your individual case. This ICSI Health Care Guideline is designed to assist clinicians by providing an analytical framework for the evaluation and treatment of patients, and is not intended either to replace a clinician's judgment or to establish a protocol for all patients with a particular condition. An ICSI Health Care Guideline rarely will establish the only approach to a problem. Copies of this ICSI Health Care Guideline may be distributed by any organization to the organization's employees but, except as provided below, may not be distributed outside of the organization without the prior written consent of the Institute for Clinical Systems Improvement, Inc. If the organization is a legally constituted medical group, the ICSI Health Care Guideline may be used by the medical group in any of the following ways: • • copies may be provided to anyone involved in the medical group's process for developing and implementing clinical guidelines; the ICSI Health Care Guideline may be adopted or adapted for use within the medical group only, provided that ICSI receives appropriate attribution on all written or electronic documents; and copies may be provided to patients and the clinicians who manage their care, if the ICSI Health Care Guideline is incorporated into the medical group's clinical guideline program.

All other copyright rights in this ICSI Health Care Guideline are reserved by the Institute for Clinical Systems Improvement. The Institute for Clinical Systems Improvement assumes no liability for any adaptations or revisions or modifications made to this ICSI Health Care Guideline.

ICS I
I NSTITUTE FOR C LINICAL S Y S T E M S I M P ROV E M E N T

Health Care Guideline:

Palliative Care

1

Third Edition November 2009
2

Patient presents with new or established diagnosis of a progressive, debilitating and/or potentially life-limiting illness
A

All algorithm boxes with an "A" and those that refer to other algorithm boxes link to annotation content. Text in blue throughout the document also provides links.

3

Imminently dying patient presents
A

Initiate palliative care discussion
A

4

Assess patient's palliative care needs and establish goals of care
A

5

6

7

8

9

10

11

Physical aspects of care
A

Cultural aspects of care
A

Psychological aspects of care
A

Social aspects of care
A

Spiritual, religious and existential aspects of care
A

Ethical and legal aspects of care
A

Care of the imminently dying patient
A

12

Develop or revise palliative care plan
A
13

Does patient meet hospice criteria?
A yes
15 14

no

Hospice care team coordinates care with primary provider
A

yes

Does patient choose hospice?
no
16

Make palliative and/or specialty care referrals and/or consults as needed
A
17

Implement palliative care plan

18

Through periodic reassessment, is the care plan meeting the patient's needs?
yes
19

no

yes

Continue with current care plan?
no
20

Remission or resolution of disease?
A no
22

yes

21

Out of guideline

A = Annotation

Death and bereavement
A

Return to Table of Contents

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Copyright © 2009 by Institute for Clinical Systems Improvement 1

Third Edition/November 2009

Palliative Care

Table of Contents
Work Group Leader
Martha McCusker, MD, FACP Internal Medicine/ Geriatrics, Hennepin County Medical Center

Algorithms and Annotations ....................................................................................... 1-48

Work Group Members
Cardiology Manpreet Kanwar, MD Mankato Clinic Ralph Morales, MD Innovis Health

Chaplain Rob Ruff, BCC HealthPartners Regions Hospital

Family Medicine/Geriatrics Lyn Ceronsky, MS, GNP-BC Fairview Health Services Ken Kephart, MD Fairview Health Services Mabel Rohr, CNP HealthPartners Medical Group Family Medicine/Palliative Care Becky Nosan, NP Allina Medical Clinic Kristina Schlecht, MD Innovis Health Sara Shorter, MD Hutchinson Medical Center Internal Medicine/ Palliative Care Dean Fox, MD St. Mary's/Duluth Clinic Health System

Supporting Evidence.................................................................................................... 49-59
Brief Description of Evidence Grading ............................................................................ 50 Annotated Bibliography ..............................................................................................51-52 References ...................................................................................................................53-59

Algorithm ........................................................................................................................... 1 Foreword Scope and Target Population......................................................................................... 3 Clinical Highlights and Recommendations .................................................................. 3 Priority Aims ................................................................................................................. 4 Key Implementation Recommendations ....................................................................... 4 Related ICSI Scientific Documents .............................................................................. 4 Disclosure of Potential Conflict of Interest................................................................... 5 Introduction to ICSI Document Development .............................................................. 5 Description of Evidence Grading.................................................................................. 6 Introduction ..................................................................................................................... 7-9 Annotations ................................................................................................................. 10-43 Appendices .................................................................................................................. 44-48 Appendix A – Myths About Palliative Care........................................................... 44-45 Appendix B – Comparison Between Palliative Care and Hospice ..............................46 Appendix C – Medicare Hospice Benefit: Eligibility and Treatment Plan ............ 47-48

Support for Implementation ..................................................................................... 60-68
Priority Aims and Suggested Measures ....................................................................... 61-62 Measurement Specifications ....................................................................................... 63 Key Implementation Recommendations .......................................................................... 64 Knowledge Resources ...................................................................................................... 64 Resources Available..................................................................................................... 65-68

Pharmacist Dianne Brundage, PharmD Park Nicollet-Methodist Social Worker Danielle TenCate, MSW HealthPartners Regions Hospital

Facilitators Kathy Cummings, RN, BSN, MA ICSI Linda Setterlund, MA, CPHQ ICSI

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Institute for Clinical Systems Improvement

Setting realistic goals of care and providing realistic hope are essential. (Annotation #22) • • • • Return to Table of Contents Institute for Clinical Systems Improvement www. religious. Annotation #13) Health care providers play an important role in the grief and bereavement processes by supporting the patient and family throughout the course of illness and following the patient's death. It commonly presents itself in physical symptoms. (Introduction. (Annotation #3. This guideline may be appropriate for patients who still desire curative or life-prolonging treatments. (Annotation #3. debilitating illness. or patients who are best served by active end-of-life management. thus controlling symptoms to maximize patient comfort is a cornerstone function of palliative care. Aim #2) In the delivery of palliative care. palliative care is not limited by the clinical or reimbursement perspective. life-threatening or chronic.icsi. This guideline will not assist providers in the identification or care for pediatric patients with life-threatening or chronic progressive illness. social. (Annotations #4. (Annotations #5-11. Communication difficulties among health care providers. financial. spiritual. Within the guideline there is a brief overview of the Special Considerations for Pediatric Patients. ethical and legal issues. Aim #1) Where palliative care consultation is available. assessment and management of non-physical areas of suffering that are important to the patient. Aim #6) Suffering is common in this patient population. Also important are the recognition. existential. Aim #3) The ability to address these issues depends on the quality of communication with patients and families. psychological.Third Edition/November 2009 Palliative Care Foreword Scope and Target Population This guideline will assist primary and specialty care providers in identifying and caring for adult patients with a potentially life-limiting. It will outline key considerations for creating a plan of care to meet patient. referral to this service should be done early on in the patient's care. Aim #2) Health care providers should complete a systematic review and document patients' goals for care and advance directives. family and other caregivers' needs throughout the continuum of care. unlike hospice. • • • Health care providers should initiate palliative care conversations with their patients. "Would you be surprised if the patient didn't live into adulthood?" (Annotations #1. (Introduction) Hospice is a form of palliative care. (Annotation #4) Return to Table of Contents Clinical Highlights and Recommendations • Palliative care planning should begin early in the patient's journey of a progressive. and families can hamper quality of care and patient well-being. 3. A key question for providers is "Would you be surprised if the patient died within two years?" Or for pediatric patients. primary care providers should begin palliative care planning early. progressive illness who may benefit from palliative care. 10. However. These include cultural. aggressive interventions may continue with an increased focus on symptom management.org 3 . Where palliative care services are not available. patients.

Improve the continual reassessment and adjustment of the patient's palliative care plan as conditions warrant. 5-11) 6. (Annotations #4. debilitating illness. Develop a process for timely referral to palliative care consultation for patients with a progressive. documentation and ongoing utilization of advance directives for patients with a progressive. 1.Foreword Third Edition/November 2009 Palliative Care Priority Aims 1. Develop scripts for health care providers that will assist them in initiating and discussing palliative care services. Improve the assessment of the identified patient's palliative care needs utilizing the seven domains of palliative care. 3) 2. Increase the completion. debilitating disease.icsi. 5-11) 4. debilitating illness. (Annotations #4. (Annotations #1. Develop a process that will allow providers to identify and assess patients who would benefit from palliative care services. debilitating disease who would benefit from palliative care services. patients and families regarding the elements and appropriateness of palliative care. It is important to address the difference between palliative care and hospice. Improve the effectiveness and comfort level of the primary care provider in communicating the necessity and benefits of palliative care with those patients with a progressive. Increase palliative care planning with patients who have been identified in the early stages of a progressive debilitating disease. 3. (Annotation #3) 3. utilizing the seven domains of care. 10) Return to Table of Contents Key Implementation Recommendations The following system changes were identified by the guideline work group as key strategies for health care systems to incorporate in support of the implementation of this guideline. Develop a process to provide education to clinicians. Increase the identification of patients who are in the early stages of a progressive.org 4 . Return to Table of Contents Related ICSI Scientific Documents Guidelines • • • • Assessment and Management of Chronic Pain Major Depression in Primary Care Management of Chronic Obstructive Pulmonary Disease (COPD) Palliative Care Order Set Order Sets Return to Table of Contents Institute for Clinical Systems Improvement www. This process should include the use of a screening tool that utilize the seven domains. 2. (Annotations #4. (Annotation #4) 5. 4.

Participants must disclose any potential conflict and competing interests they or their dependents (spouse. Return to Table of Contents Introduction to ICSI Document Development This document was developed and/or revised by a multidisciplinary work group utilizing a defined process for literature search and review. Order Sets and Protocols at http://www. or political interests relevant to the topics covered by ICSI documents. dependent children. revision and approval of ICSI documents (guidelines. No other work group members have potential conflicts of interest to disclose. order sets and protocols). Women's Health Steering Committee. document development and revision. Preventive & Health Maintenance Steering Committee and Respiratory Steering Committee). Return to Table of Contents www. review and approve ICSI documents. proprietary.icsi. For a description of ICSI's development and revision process. as well as obtaining input from and responding to ICSI members. Dianne Brundage's spouse owns stock in Glaxo-Smith-Kline and is a consultant for Abbott Laboratories and Novartis. Such disclosures will be shared with all individuals who prepare. Cardiovascular Steering Committee. Lyn Ceronsky received an honorarium from Center to Advance Palliative Care (CAPC) for a presentation.org.icsi. order sets and protocols) and committees (Committee on Evidence-Based Practice. This applies to all work groups (guidelines.org Institute for Clinical Systems Improvement 5 . disclosing potential conflict and competing interests of all individuals who participate in the development.Foreword Third Edition/November 2009 Palliative Care Disclosure of Potential Conflict of Interest ICSI has adopted a policy of transparency. or others claimed as dependents) may have with any organization with commercial. please see the Development and Revision Process for Guidelines.

Primary Reports of New Data Collection: Randomized. controlled trial Non-randomized trial with concurrent or historical controls Case-control study Study of sensitivity and specificity of a diagnostic test Population-based descriptive study Cross-sectional study Case series Case report Meta-analysis Systematic review Decision analysis Cost-effectiveness analysis Consensus statement Consensus report Narrative review Medical opinion Class D: B.Foreword Third Edition/November 2009 Palliative Care Evidence Grading System Class A: Class B: Class C: Cohort study A. YYYY [report class]).org Institute for Clinical Systems Improvement 6 .org.icsi. Reports that Synthesize or Reflect upon Collections of Primary Reports: Class M: Class R: Class X: Citations are listed in the guideline utilizing the format of (Author. A full explanation of ICSI's Evidence Grading System can be found at http://www.icsi. Return to Table of Contents www.

through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems. Nearly all physicians and health care providers offer palliative care to their patients.Third Edition/November 2009 Palliative Care Introduction The World Health Organization in 2002 stated that "palliative care is an approach that improves the quality of life for patients and their families facing the problems associated with life-threatening illness. More challenging cases of distressing symptoms or complicated communication systems would be appropriate for referral to tertiary palliative care to a multidisciplinary team that includes board certified specialists when available." Thought of in this way. By intervening with patients at the onset of progressive and debilitating disease. HOSPICE: The patient has both • • a limited life expectancy (specifically six months or less) and the goals for care are exclusively to achieve and maintain comfort. Palliative care is operationalized through effective management of pain and other distressing symptoms. "palliative care" and "hospice care" are terms often used interchangeably. Depending on individual interest and prevalence of specific symptoms or situations in a given practice. Palliative care is both a philosophy of care and an organized. which means to "cloak or cover. but most are progressive at different and occasionally unpredictable rates. but the intensity of palliative care services provided accelerates as the illness progresses. chronic renal failure. and others. Sometimes these conditions and diseases are reversible. Palliative care may be provided simultaneously with other medical interventions that treat the underlying disease process. These specialists are also responsible for teaching other providers and building systems to guarantee the highest possible level of palliative care expertise for a population of patients. interdisciplinary practice guidelines. regardless of the symptom burden Return to Table of Contents Institute for Clinical Systems Improvement www. The majority of the medical community is not well versed in this. many providers develop additional skills and provide a secondary level of palliative care. palliative care is part of everyday practice for health care professionals. Examples of illnesses that meet this definition would include heart failure. and quality assurance and performance improvement requirements. regardless of the stage of the disease or the need for other therapies. metastatic cancer. multiple sclerosis. Indeed there is a presumption that providers will all be able to provide a primary level of palliation for symptoms commonly encountered in their respective practices. dementia. health care professionals can assure that appropriate interventions offered meet the goal of reducing the burden of disease. helping with the decision-making and providing opportunities for personal growth. It is designed for patients with a limited life expectancy of six months or less (according to Medicare hospice coverage criteria) if the disease runs its normal course and is chosen by patients who want comfort rather than life-prolonging care. but it also limits access to appropriate services early in the course of illness and treatment. Broadly defined as the reduction of suffering. advanced HIV infection. 2008 [M]).icsi. much the same way they offer varying degrees of many different medical specialties. while incorporating psychosocial and spiritual care according to patient and family needs. beliefs and culture(s) (Lorenz. Hospice is a defined CMS benefit with explicit enrollment criteria. amyotrophic lateral sclerosis.org 7 ." The National Consensus Guidelines for Palliative Care initially released in 2004 state the goals of palliative care are to prevent and relieve suffering and to support the best possible quality of life for patients and their families. values. In America. The word "palliate" is derived from the Latin word palliatus. Palliative care can be delivered concurrently with life-prolonging care or as the main focus of care. it is meant to convey care that wraps the patient with support to reduce the burden of illness. psychosocial and spiritual. Palliative care expands the traditional disease-modifying medical treatments to include the goals of enhancing quality of life for patient and family. highly structured system for delivering care. chronic obstructive lung disease. That is not only incorrect. Hospice care is a philosophy of care with health care benefits under most insurance payers. optimizing function. physical.

org 8 Institute for Clinical Systems Improvement . patient and family satisfaction and financial impact. There is a clear need for continuing research addressing outcomes of palliative care – whether that care is delivered in hospitals or outpatient settings.pdf). as the disease advances. however. improved patient and family satisfaction. It was this model that informed the inclusion of a limited life expectancy as a criterion for hospice services. Early recognition of life-limiting illness by providers and an understanding of disease progression by patients and families are both critical for appropriate interventions and use of this guideline. Higginson. and the need for interdisciplinary approaches to the relief of suffering increases. At some point. Smith. 2007 [C]. Elsayem. Morrison. manifest different patterns.wisconsinhospice.Algorithm Annotations PALLIATIVE CARE: The patient has either • • a limited life expectancy (regardless of symptom burden or goals for care) Third Edition/November 2009 Palliative Care or a significant symptom burden (regardless of prognosis or goals for care) or goals for care exclusively to achieve and maintain comfort (regardless of prognosis or symptom burden) By defining appropriate evaluations and outcomes. As illness progresses. the intensity of palliative interventions will also increase. Ciemins. Positive outcomes have been demonstrated by hospital-based programs in three areas: relief of physical and emotional suffering. and utilization of palliative care and hospice expertise when necessary. which may be prolonged. Palliative Care Hospice Efficacy and cost-effectiveness of palliative care "All hospice is palliative care. 2006 [R]. Quality measurement tools have been developed for symptom management.icsi. and symptoms are readily treated. Due to escalating burden. Trajectories of late-life illness (see following graphs) The natural history of most cancers. 2008 [M]. function begins to decline. Other chronic medical conditions. 2002 [M]. without treatment. is generally marked by a period. 2004 [D]. and reduced costs (Campbell. and from there the trajectory of the illness tracks steadily downward. this guideline attempts to assist the health care provider with the appropriate discussions. 2003 [M]). 2008 [A].org/images/EOL%20knowing%20Time%20is%Right%20Powerpoint. but not all palliative care is hospice" (http://www. clinical interventions. Gade. where patients enjoy good functional status. The National Quality Forum (2006) identified 38 preferred practices in palliative care. ongoing communication and reassessment are critical to achieving satisfactory outcomes. Patients with conditions Return to Table of Contents www.

. with occasional downward spikes marking episodes of infection (e. Annals of Internal Medicine. Jan.org 9 Institute for Clinical Systems Improvement .icsi. 2008 [M ]). "Comparison Between Palliative Care and Hospice.Algorithm Annotations Third Edition/November 2009 Palliative Care such as congestive heart failure and chronic obstructive pulmonary disease have periodic exacerbations where they may become quite ill." for disease-specific conditions and symptoms. Used with permission 2009-2010. with the sharp downward inflections marking the acute illnesses. See Appendix B. Return to Table of Contents www.g. during which death may occur. which may occur over years. Medical treatment may successfully improve their status although functional recovery may not return quite to the pre-episode level. Progressive neurologic illnesses. such as Parkinson's and Alzheimer's diseases. and even pre-morbid. generally show a slow overall decline in slope. A graph would show a sawtooth pattern. 2008. with an overall slow downward slope in the curve. pneumonia) during which a patient might die (Lorenz.

org Institute for Clinical Systems Improvement 10 .icsi. Early identification of patients with conditions that would benefit from palliative care planning can be accomplished by considering conditions and symptoms that are appropriate for palliative care services. Patient Presents with New or Established Diagnosis of a Progressive. but "not ready" Return to Table of Contents Return to Algorithm www. Debilitating and/or Potentially Life-Limiting Illness Key Points: • • Both providers and patients generally don't recognize early on those individuals who would benefit from palliative care planning.Algorithm Annotations Third Edition/November 2009 Palliative Care Algorithm Annotations 1. especially with functional decline Pain and /or other symptoms not responding to optimal medical treatment Need for advance care planning Guideline met for hospice eligibility. General considerations clinicians should use to identify patients who would benefit from palliative care planning include: • • • • Disease progression.

e. pulmonary fibrosis. hospitalizations Uncontrolled symptoms due to cancer or treatment Introduced at time of diagnosis – if disease likely incurable Introduced when disease progresses despite therapy Stage III or IV heart failure despite optimal medical management Angina refractory to medical or interventional management Frequent emergency department visits or hospital admissions Frequent discharges from implanted defibrillators despite optimal device and antiarrhythmic management Oxygen-dependent.g. The medical literature also shows that patients with terminal illness often don't recognize that they are dying.icsi. or are unable to acknowledge the fact even to themselves until very late. and other physical www..Algorithm Annotations Third Edition/November 2009 Palliative Care Conditions that may prompt palliative care planning include (this is not intended to be an all-inclusive list): Debility/Failure to Thrive • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • Greater than three chronic conditions in patient over 75 years old Functional decline Weight loss Patient/family desire for low-yield therapy Increasing frequency of outpatient visits.org Institute for Clinical Systems Improvement 11 . O2 sats less than 88% on room air Unintentional weight loss Dyspnea with minimal to moderate exertion Other pulmonary diagnoses. Appropriate medical interventions need to address suffering that occurs due to pain. emergency department visits. Multiple studies have shown that physicians overestimate prognosis by a factor of two or more. pulmonary hypertension Refractory behavioral problems Feeding problems – weight loss Caregiver stress – support needed Frequency of emergency department visits Increased safety concerns Increased need for paracentesis for removal of ascitic fluid Increased confusion (hepatic encephalopathy) Increased safety concerns Symptomatic disease Dialysis Stage IV or Stage V kidney disease Stroke Parkinson’s ALS – amyotrophic lateral sclerosis MS – multiple sclerosis Cancer Heart Disease Pulmonary Disease Dementia Liver Disease Renal Disease Neurologic Many residents in long-term care facilities and patients with poor social support have these symptoms and should be assessed for palliative care. See Appendix B. Unfortunately. Life-limiting illness is usually defined as the question "Would you be surprised if your patient died within the next two years?" This definition significantly broadens the identified population associated with hospice care to those who would benefit from palliative care. The work group offers a comparison of Conditions and Symptoms appropriate for Palliative Care and Hospice. accurately predicting death can only be identified by retrospective measures.

Providers should discuss the likelihood of disease progression to death with patients and/or their families. Other domains that should be addressed by an interdisciplinary team include cultural.Algorithm Annotations Third Edition/November 2009 Palliative Care symptoms.icsi. Decreased intake of food and liquids. as the health education system is geared much more toward "cure" and the prolonging of life rather than "palliation" or "comfort care. Physicians are frequently inaccurate about the length of time left to a patient before he/she dies. Increased periods of sleep. Return to Algorithm Return to Table of Contents 2. 1995 [C]). The following signs and symptoms may indicate that death is approaching. When recovery is uncertain. yet may add significantly to patient discomfort. The point in time at which the death of a patient appears inevitable is often very difficult for health care providers. or may be the sole focus of care. 1989 [R]). Return to Table of Contents Return to Algorithm www. lethargy. ethical and social issues. 2006 [R]). spiritual. Studies document deficiencies in the care of seriously ill patients in communication and treatment of pain and other symptoms (SUPPORT. There is often a reluctance to make the diagnosis of dying if any hope of improvement exists and even more so if no definite diagnosis has been made. agitation. • • • • • Delirium. Chochinov. lacking needed coordination and communication among health care providers and patients. This portion of the guideline is meant to aid providers in identifying those patients imminently dying or those to whom aggressive therapy is no longer the best option. Each individual patient is different. often manifested by increased restlessness. invasive procedures and treatments at the expense of making the patient comfortable. These patients may not have been previously identified as palliative care patients. 2009 [R]. Diagnosing dying is a complex process. Very rapid breathing or cyclic changes in the patterns of breathing (Cheyne-Stokes respirations). This may result in a continuation of invasive treatments that have only a small chance of effectiveness. Periods of pausing in breathing (apnea) whether awake or sleeping. confusion. 2004 [R]). Physicians are trained to cure patients and will often continue aggressive. Withdrawal from active participation in social activities. Imminently Dying Patient Presents Key Points: • • See Annotation #11 for care of the imminently dying patient. 2001 [B]). Other abnormal breathing patterns. Providers should recognize patients with signs of imminent death or those patients who are receiving futile care. and psychological issues. patients and their families (Balaban. 2000 [R]). 2000 [D]. inability to stay content in one position and insisting on changing positions frequently. Not all individuals will show all of these signs.org 12 Institute for Clinical Systems Improvement . National Quality Forum. The care of seriously ill patients is often fragmented. The care plan created includes the caregivers and family (National Consensus Project. inconsistent. and providing inadequate emotional support (Morrison. Lamont. 2000 [R]. Palliative care can occur simultaneously with curative therapies. it is better to discuss this rather than giving false hope to the patient and family (Christakis." with little training in communication among providers. or result in provider withdrawal from the patients and family during the terminal phase of an illness (Balaban.

• • • • Patient breathing through wide open mouth continuously and no longer can speak even if awake. • • Inability to arouse patient at all (coma) or ability to arouse patient only with great effort. Third Edition/November 2009 Palliative Care Patient requests family visit to settle unfinished business and tie up loose ends. There are several "scripts" that can be used both in practicing and in actual conversations. Fever. Return to Algorithm 3.icsi. Initiate Palliative Care Discussion Key Points: • • • • The ability to frankly discuss advanced care plans with patients and families is as important as any other medical interventions. Practice and experience with discussions about palliative care and complex medical decisions will improve providers' skill and comfort levels. Severe agitation in patient. especially the hands and feet (mottling). Shortness of breath. Consider palliative care referral (see Annotation #16) Multiple studies and patient surveys have shown that most (though not all) patients generally desire frank but empathic disclosure of a terminal condition or other bad news. acting "crazy" and not in patient's normal manner or personality. Return to Table of Contents Patient complains that his or her legs/feet are numb and cannot be felt at all. Inability to heal or recover from wounds or infections. Increased swelling (edema) of either the extremities or the entire body. such as red or brown. Marked decrease in urinary output and darkening color of urine or very abnormal color of urine. Return to Algorithm Return to Table of Contents www. Increased respiratory congestion or fluid buildup in the lungs.Algorithm Annotations • • • • • • Patient reports seeing persons who have already died. Systolic blood pressure below 70. Vomiting. 2001 [R]). Patient's body is held in a rigid unchanging position. but patient quickly returns to severely unresponsive state (semicoma). or a blue or purple coloring to the patient's arms and legs. • • • • • • • Blood pressure dropping dramatically from patient's normal blood pressure range (more than a 20-30 point drop).org 13 Institute for Clinical Systems Improvement . Not taking food by mouth. hallucinations. Inability to swallow any fluids at all. Patient's extremities feel very cold to the touch. Patient states that he or she is dying. Diastolic blood pressure below 50. and thus delivering such news is a critical skill in the palliative care area (Vandekieft. Urinary or bowel incontinence in a patient who was not incontinent before. Cyanosis.

One mnemonic found useful for this guideline include: • ABCDE (Advance preparation. and contact other providers about the situation where appropriate. Build a therapeutic environment/relationship. Implicit in these definitions is that a terminal diagnosis is not the only form of bad news. please feel free to talk to me or one of my colleagues. at any time. set up follow-up appointments. it is important to "leave the door open.)." For example you may say. Mentally rehearsing the way you wish to present the information and options can give you a sense of how the conversation may go. the more a provider prepares for discussions surrounding palliative care and puts that preparation into practice. gently. how they want to be told (bluntly. or emotional deficit in the person receiving the news that persists for some time after the news is received" (Ptacek. behavioral. Many providers feel they lack confidence and experience in discussing with patients the issues and decisions that come with having a progressive. if possible. findings suggest that family members feel more satisfied and supported during the decision-making process when there is communication during a family conference about the patient's end-of-life wishes. taking into consideration your relationship with the patient. Remember to individualize your approach for each given patient and family based on how much they know at that point and how they prefer to receive information. so that you are fully aware of the situation. debilitating illness – specifically recommendations about palliative care and hospice services. ultrasound-verified fetal demise to a pregnant woman. physician recommendations for withdrawing life support and attention to family's spiritual needs (Gries. Use touch and humor where appropriate. 1996 [R]). Another definition of bad news is "any news that drastically and negatively alters the patient's view of her or his future" (Buckman. questions and problems that may arise with patients and families at this time in their lives. "That's OK. Encourage and validate emotions) (Vandekieft. Reassure the patient of your availability. In the absence of more formal education.icsi. it may also refer to disclosing the diagnosis of a serious chronic condition such as multiple sclerosis." Have family members or friends present as per the patient's preference. in situations where decisions are made to withdraw life support. and how much they want to know at that time. 1984 [X]).org Institute for Clinical Systems Improvement 14 . the more skilled and comfortable that provider can become in this aspect of medical care. This may involve delivering "bad news" as well as answering questions that may not have specific answers. 2008 [B]). and generally obtain a better understanding of the emotions. and other scenarios. practice examples of these discussions. and that the session will be free of interruptions. including setting the pager to silent or leaving it with a colleague.Algorithm Annotations Third Edition/November 2009 Palliative Care Additionally. how much would you like to know?" If the patient indicates that he/she does not want any information. Deal with patient and family reactions. etc. are you the kind of person who likes to know what is going on?" "Would you like me to tell you the full details of the diagnosis?" "If your condition is serious. 2001 [R]) Advance preparation: Obtain the patient's medical information and test results. A useful definition of "bad news" is information that "results in a cognitive. and take time to learn names and relationships of each support person present. Return to Table of Contents • Return to Algorithm www. There are several excellent mnemonics available to help providers increase their knowledge. Communicate well. • • • "If this condition turns out to be something serious. If you change your mind. Make sure that you have an appropriately private location in which to have the discussion. Build a therapeutic environment/relationship: Try to find out how much the patient and family understands.

Think out loud. • "I was probably raised differently than you. Communicate any bad news to the patient and family. tears and questions. dignity and quality of life as defined by the patient. if the patient is a company executive who is used to calling the shots. intellectualization. written question prompts (suggesting possible questions that a patient or family may want to ask). There may be anger from the patient and family about care received from you or another colleague. blame. For example.)" (Baile. • • "I know this is not what you were hoping to hear. resist becoming defensive or argumentative about these issues. Strong emotions elicited in difficult conversations may distract the patient from hearing the full communication. Deal with patient and family reactions: Be sensitive to the emotional reactions of the patient and family. Visual aids. Reassure the patient that every effort will be made to promote comfort. It is important that the patient and family do not lose their sense of hope." Don't say. it may be advisable to ask a few open-ended questions prior to delivering the actual bad news to assess what the patient and family already know and their readiness to hear the news (Baile. Although a care provider may be uncomfortable with these terms. 2002 [R])." etc. and the provision of audio tapes of the conversations may aid communication and recall of important points. Crying may occur but make sure that your tears are empathic in nature and not reflective of personal issues on your part. may be done by redirecting the focus of hope to keep the patient comfortable and as symptom-free as possible. Return to Table of Contents Return to Algorithm www. 2002 [R])." instead say. Watch for signs of depression and suicidality in subsequent visits. This allows the patient and family (if present) time to react to the news and to discuss concerns of the patient. and may have to wait to "digest" what information can be absorbed. "There is nothing more we can do.Algorithm Annotations Third Edition/November 2009 Palliative Care Communicate well: Ask the patient for any questions. Speak truthfully but compassionately and avoid using medical terms or euphemisms. If the education level and preferred style are unknown. Try to deal with that particular patient's and family's cultural and ethnic norms. even though a "cure" may not be possible. allow time for silence. 2006 [R]). Repeat important points and write things down and periodically assess the patient's understanding of the information and reactions to what was heard (Lee. Talk with the patient about what this means for him/her. Adapt the communication style to the education level and personal preference of the patient and family. Be empathetic. this person may benefit more if provided with several different options to chose from rather than being told what to do (Block. If the patient (and family if present) is ready. 2000 [R]). 2000 [R]). Remember that the patient may not retain much of the information given beyond that of the diagnosis or prognosis. 1999 [R]). Don't rush the process.icsi.org 15 Institute for Clinical Systems Improvement ." "dying. disbelief and acceptance may be present to varying degrees and time frames. and allows the patient to receive the news at his or her own pace (Ellis. For example. "I'm afraid I have (difficult/bad) news to share on (his/her) condition" (Lee. they help with clarity of communication and accurate understanding by the patient and family of what is being said. The care provider may want to deliver a "warning" statement prior to the bad news itself to prepare the patient (and family if present) for the communication that follows. 2000 [R]). a good rule of thumb is to present information at a sixth through eighth grade level (Balaban. discuss treatment options and arrange for follow-up to put those options into action. Say the words "cancer. etc." "death. Offer realistic hope. Recognize that denial. periodically ask the patient and family how and what they are feeling and respond with empathy. and what needs outside of the traditional medical scope he/she may have. Can you tell me how your family deals with these situations?" Encourage and validate emotions: During the discussion. help the patient and family feel they are part of the team. "What we are going to focus on now is___(comfort. pain relief. Communicating hope. Additionally.

Children and their families are a special population with special palliative care needs. • Palliative care planning should begin at the time of diagnosis of a life-threatening or debilitating condition and continue through cure. as part of any good health care provision. Assess Patient's Palliative Care Needs and Establish Goals of Care Key Points: • • • • Use of a consistent. Document details of all discussions in the medical record (Lee. which may lead to delays in palliative treatments in favor of unnecessary curative or invasive treatments (Baile. The prognosis for a patient is based on multiple factors with complex interactions. medications and therapeutics.icsi. Good palliative care. and physician knowledge and experience (Sinclair. 2000 [D]). or until death and then into the family's bereavement period. The communication of prognosis should be individualized to the needs and desires of the particular patient and family. values and resources. It is important. functional status.org 16 Institute for Clinical Systems Improvement . family and health care team. especially when there is a change in care setting or a transfer to another facility." Third Edition/November 2009 Palliative Care Additional considerations pertaining to the initial discussion between provider. As mentioned elsewhere.Algorithm Annotations See Appendix A. that there is recognition of patient autonomy in choosing care (Kass-Bartelmes. 2000 [R]). to assess comprehension of information. Return to Algorithm Return to Table of Contents www. 2006 [R]). Encourage continual communication for status updates. including diagnoses. especially in the development of recommendations for care of patients' palliative care and end-of-life needs. leaving clinicians relatively unprepared to handle this task. Thorough assessment should be based on the domains of palliative care and address needs. and little attention is given to this issue in most training programs. physicians tend to significantly overestimate prognosis. 2000 [R]). social issues. Return to Table of Contents • • • Return to Algorithm 4. requires continual reappraisal of the benefits and burdens of therapies (Steinhauser. Documentation and periodic review of the patient's goals and plan of care are essential. validated assessment tool enhances care. Periodic reassessment and revision of the care plan should be incorporated into care conferences to assure ongoing communication among the patient. as patient preferences may not be known to the providers in the new setting. or tie prognoses to hypothetical situations (Sinclair. Coordination of communication is essential among providers. "Myths About Palliative Care. This problem appears particularly common when patients are transferred from an acute care setting to a skilled nursing facility and back (Casarett. patient and family (based on expert consensus) include the following: • Discussing prognosis is a difficult issue. 2006 [R]). Physicians may build additional trust by acknowledging limitations in providing a prognosis (Balaban. 2003 [R]). 2005 [NA]). and to respond and empathize with new emotions as they come up. It may be best to provide a range of dates or times. 2002 [R]). patient preferences.

It is helpful in care planning if the community has a uniform system to communicate patient wishes so that the continuity of care makes a smooth transition between providers in these circumstances. the "ask – tell – ask" model provides a useful and effective structure for such conversations. Providers should always assume patients and family member have questions instead of asking whether they do (e. Providers can then add additional clinical information as needed or clarify any misconceptions. based on a comprehensive assessment. it is important for both patient and providers to have a realistic understanding of the options available. say "The cancer has spread" rather than "The cancer has metastasized"). At present. can you tell me. communitywide agreement on recognition of particular advance directive forms and Physician Orders for Life-Sustaining Therapy (POLST) enhances the quality of care available. practical and spiritual needs of patients and their families. goals for care and for living (quality of life). In this regard. Only then can a reasonable determination be made of what services are required to meet the physical. facilitate treatment and treatment planning. may find it difficult to address all domains. Among the available assessment tools. This can be normalized by saying "To make sure I did a good job explaining everything. providers begin by asking patients and/or family members what they already know about the clinical situation (e. remembering to use plain. as much as possible.icsi. assessment of palliative care needs will necessarily be ongoing and may require at some point. This assessment needs to be reviewed on a regular basis. 1998 [D]). 2009 [R]). everyday language instead of "medicalese" (e.org 17 Institute for Clinical Systems Improvement . are fully considered. The work group recognizes this and suggests that clinicians could incorporate key aspects of palliative assessment with existing assessment processes. it was the decision of this work group to recommend the Edmonton Symptom Assessment System (ESAS) because it is readily available via Internet. 2006 [D]. When discussing goals of care or a patient's end-of-life wishes.g. Return to Algorithm Return to Table of Contents www. Routine assessment has been shown to identify symptoms that may otherwise have been overlooked or unreported. don't ask "Do you have any questions?" but rather ask "What questions do you have?") Finally. and enhance patient and family satisfaction (Morrison. social. as well as preferences for the type and site of care should be assessed and documented. providers should ask the patient and/or family to restate the information discussed to assess their understanding. The initial meeting for care planning is also useful for identifying availability and limitations of caregivers and other resources for meeting patient needs in implementing the plan of care. those who may impact decision-making should be integral to the initial plan of care development. Patient and family expectations. in a busy practice. Bringing together. "What have the doctors told you about your illness?"). 2004 [R]). psychological. The patient must have the capacity to understand the choices available. Further. For patients to make informed choices regarding palliative care. especially when some of the choices are not likely to benefit the patient to any great extent. Moro.Algorithm Annotations Third Edition/November 2009 Palliative Care One goal of this annotation is to discuss how clinicians can create an environment in which the needs of the patient. if the patient's decision-making capacity is impaired.g.g. Accordingly. Careful clarification for all present at initial care planning will help anticipate and prevent discord as the patient and surrogate(s) make future care choices. understanding of the disease and prognosis. 2000 [D].. there is no gold standard for assessment of symptoms in the palliative care population (Dalal. Phillip. what we just talked about (or decided)?" (Smith.. in your own words. there may be need for change of site or providers of care.. 2006 [R]). it should be recognized by providers and communicated to patients that the realistic choices available for care may change as the patient's medical condition changes. the assistance of family or other well-informed surrogates to provide the information needed to assess the patient's ever-changing palliative care needs. with consideration given to the patient's capacity to represent himself/herself. The role of surrogate for assessment of patient condition and expression of patient wishes should be anticipated at the time of initial assessment and care planning. and it has a robust evidence-based foundation for validation in various clinical settings (Chang. They also encourage using a team approach. Providers recognize that assessment of these domains of care is important to a patient's care but. it is thorough yet simple in clinical application. In this model. As patient and provider conditions change.

condition. (See Resources Available at the end of this guideline. Establishing trust and support to work with the patient/family throughout the course of illness. These goals focus on: • • • • Gaining knowledge of the person experiencing illness and understanding this person's goals. Incorporating time for this assessment can be done in either the inpatient. this assessment may be done by the palliative care team or by the physician during daily rounds. A step-by-step model for care conferences (Moneymaker. For more information. and research have occurred in response to the Institute of Medicine's Report. see Annotation #10. Providers should be aware of their individual state.) Return to Algorithm Return to Table of Contents www. there is growing evidence that health care has failed to meet the specialized needs of children with lifelimiting and life-threatening conditions. Promoting communication between the care team and patient/family. It is important to manage developmental level concerns. McDonagh. Resources Available section for the POLST and ESAS Web sites. clinical education. There are specific ethical and legal concerns related to the pediatric population. Decreasing stress and suffering by reviewing realistic goals and establishing a realistic plan that aligns with these goals. Special Considerations for Pediatric Patients • • • Children with life-limiting diseases and their families benefit from pediatric-specific palliative care services.icsi. "When Children Die: Improving Palliative Care for Children and their Families (2003). In the home setting. as well as for children who are not expected to live to adulthood. provincial or national forms and requirements.Algorithm Annotations Third Edition/November 2009 Palliative Care See the Support for Implementation. including perinatal and neonatal palliative care. In the outpatient setting. 2004 [D]). Family counseling literature and studies of giving bad news and end-of-life discussions form the basis for these expert recommendations (Curtis. outpatient or home settings." Care conferences Patient and family meetings or care conferences allow the treatment team an opportunity to meet with the patient and/or family to discuss the patient's diagnosis. course of illness and treatment options and to answer questions and establish both the goals and plan of care. advancing illness. Most guidelines for care conferencing are based on expert recommendations. 2001 [R]. The level of formality of these conferences is likely to vary depending on the focus or goals. These conferences may involve the primary provider and part of the care team or the entire team. In the inpatient setting." The continuum of pediatric palliative care extends across settings. this can be accomplished in one or more home visits. Documentation of the advance directive in an electronic medical record promotes accessibility and portability across care settings. this assessment can be accomplished over a series of visits or during an extended visit. Pediatric palliative care programs and organizations are available to provide additional resources. "Ethical and Legal Aspects of Care. Great strides are being made to improve care for adults with serious. Unfortunately. as well as symptoms needing to be addressed.org 18 Institute for Clinical Systems Improvement . Advances in pediatric programs. There is little empirical evidence and there are few descriptive studies about family care conferences or meetings. 2005 [NA]) outlines four goals for a family meeting or conference.

Social supports to children and families before and after death are often inadequate.icsi. the legitimacy of quality-oflife considerations in goal setting. Many children undergo painful procedures and suffer from the symptoms of advancing disease without sufficient management of symptoms. The potential contribution of palliative care to provide critical support to the dying child and grieving family members cannot be overstated. Families may feel abandoned and overwhelmed. despite the fact that modern medicine has the means to relieve their pain and discomfort.org/pclc). by incorporating the perspectives of children and families in treatment. as well as improve most symptoms. interdisciplinary curriculum addresses knowledge. Responding to suffering and bereavement – enhances the ability of health care professionals to recognize. two pediatric Palliative Care Leadership Centers offer operational training on pediatric palliative care (http://www. as well as the broad cultural and religious diversity represented in the U. parents and family members by developing a perspective from which to understand and respond to the suffering and bereavement experience of children and families and how this interconnects with their own experience as professional caregivers. as well as ethical issues relevant to the treatment of pain and suffering. The Children's Institute for Palliative Care (CIPPC) provides training. attitudes and skills that health care professionals need in order to better serve children and families. consultation. and health care professionals themselves are often left without emotional support for the difficult work they do. • • • www. The End of Life Nursing Education Consortium – Pediatric Palliative Care (ELNEC-PPC). This includes ethical recommendations for guiding decisions regarding withholding or withdrawing of life support to allow natural death. 2009 [R]). often suffering emotional as well as financial loss for years. and technical assistance to health care providers who are interested in developing more opportunities for pediatric palliative care in their communities. In addition. continuing education. Many physicians and nurses have received virtually no training to practice the skills necessary for communicating effectively with dying children and their families. It includes the degree of benefit and burden associated with different treatment (and not treating) options. Other topics include the use or foregoing of artificial nutrition and hydration. their parents and loved ones. The Initiative for Pediatric Palliative Care (IPPC) provides both an education and a quality improvement effort aimed at enhancing family-centered care for children living with life-threatening conditions. and the extent to which mature minors should be able to guide their own decisions. especially when there are uncertain benefits associated with the continuation of life-prolonging treatments. the importance of honoring parental discretion in decision-making.org Institute for Clinical Systems Improvement 19 .S. reflecting on core principles in pediatric palliative care and discovering what matters most to families. how to handle conflicts. and strategies for handling circumstances in which parents and clinicians may disagree about goals of care. support and engage effectively with children with life-threatening conditions.Algorithm Annotations Third Edition/November 2009 Palliative Care Children and families are a special population that may also be confronted by a life-threatening illness. Relieving pain and other symptoms – by learning competent assessment. validate and respond to suffering in children. documentation. These include: • Engaging with children and families – enhancing the ability of health care professionals to understand. a curriculum developed for pediatric nurses and other clinicians. Practicing health care professionals often lack assistance on how to manage the goals and values that can be conflicting. resources. includes 10 modules on pediatric palliative care.capc. The Institute also develops and supports a network of providers in the Midwest region to ensure access to quality palliative care. such as those related to palliative sedation (Diekema. Analyzing ethical challenges in pediatric end-of-life decision-making – learning methods to support families as they confront an array of difficult choices often encountered when a child is gravely ill and unlikely to recover. IPPC's comprehensive. reassessment and the continuously monitoring of a pediatric patient's pain and other symptoms using developmentally appropriate pain assessment tools and strategies.

a patient's pain relief may wane. and continued use despite harm. However. and nausea and vomiting. All opioids will result in physical dependence. but are not limited to pain. assessing needs and efficacy of interventions as disease progression occurs. fatigue. they may no longer be the primary goal because of life-limiting illness. Physical Aspects of Care The control of physical symptoms is an important part of palliative care. including a cross-cultural undertaking in which the challenge is to understand and respond to the practices of the family.Algorithm Annotations • Third Edition/November 2009 Palliative Care Improving communication and strengthening relationships – enhances health care professionals' communication and relational skills. as well as family members. this should not be confused with "tolerance. diarrhea. side effects and appropriate dosing of analgesics. Physical Aspects of Care Key Points: • • • See ICSI Palliative Care Order Set for specific medications and dosages. but suffering is much broader than just physical symptoms. chronic.icsi. compulsive use. When the interval between doses of opioids is too long. is "a primary. Disease progression may necessitate increased dosing of opioids to control pain. as defined by the Federation of State Medical Boards of the United States. Symptom control is important. Pain is what the patient says it is." Pseudoaddiction may occur when analgesics are prescribed inadequately. craving. anorexia and cachexia. believe the use of opioids will create "addicts" and so are reluctant to use opioids for analgesia. constipation. the approach toward pain management in palliative care is different from those of chronic pain and acute pain management. when a patient with previously wellcontrolled pain develops the need for increasing opioid doses to achieve comfort. resulting in the need to ask for more medication. delirium. anxiety and depression. specifically pertaining to what is known about working with children and families. and it needs to be addressed adequately in order to improve quality of life. and sudden discontinuation of the opioid may result in symptoms of withdrawal. Anticipate symptom progression. dyspnea. Many patients. Common symptoms include. neurobiologic disease…characterized by behaviors that include the following: impaired control over drug use. Return to Algorithm Return to Table of Contents 5. addiction. tolerance. The clinician should frequently reassess the patient's desired level of comfort and response to interventions. along with family members. (Initiative for Pediatric Palliative Care. 2006 [R]) Also see Annotated Bibliography. advancing illness is almost always the cause (Emanuel. Pain is a subjective symptom. Return to Algorithm Return to Table of Contents www. Physical dependence is not addiction. Use a team approach to care when possible and appropriate. Pediatric Palliative Care. Addiction. there is no test to measure pain. While cures of underlying disease may still be possible." In fact. The patient should be actively involved in establishing the goals of palliative pain management. and adjust interventions accordingly. Patients and family members should be educated about medication compliance. Pain Control of pain in order to improve quality of life is an important aspect of palliative care. 1999 [R]).org 20 Institute for Clinical Systems Improvement .

should be considered when opioid side effects are difficult to manage or if inadequate analgesia is present. However. dyspnea and insomnia. to relieve intolerable suffering when refractory symptoms persist despite optimal use of other modalities. This involves the administration of non-opioid medications to sedate a terminally ill patient to adequate symptom control as an intervention of last resort. For methadone treatment of opioid addition. rectal.Algorithm Annotations Third Edition/November 2009 Palliative Care This request.. For patients with intractable pain. We recommend consultation with experts in managing palliative sedation when considering its use. Providers unfamiliar with its use should consult palliative care or pain experts. Undertreated pain Return to Algorithm Return to Table of Contents www. or another symptom.g. intravenous or subcutaneous infusions. as with other treatments." is actually a consequence of poor prescribing habits. A thorough assessment of the patient should distinguish whether the patient has visceral. fentanyl or methadone may be appropriate. Any prescriber can prescribe methadone for treatment of pain. 2009 [R]. In palliative care. somatic or neuropathic pain. but conversely. ketamine and lidocaine may be beneficial. difficulty in assessment of the cognitively impaired. Methadone has been associated with prolongation of the QT interval and Torsades de Pointes (Krantz. the clinician needs to carefully review the potential risks and benefits when applying guideline recommendations. as well. and fears of addiction and hastening death. especially for patients with cancer. Anxiety and Depression Affective disorders such as anxiety and depression are common in seriously ill patients. the dose remains the same despite the change in route. as symptom control may be achieved before unconsciousness is reached. Pain or palliative care experts should be consulted when considering the use of these agents. Not only can they can cause physical symptoms such as nausea. subcutaneous injection sites should be in well-perfused areas to achieve complete absorption. cautious dosing should be employed because the half-life of methadone is 24-plus hours. and the drug is given once daily. experiencing such symptoms can exacerbate anxiety. Recommendations and options for treatment of each type of pain can be found in the Assessment and Management of Chronic Pain guideline from ICSI. The aim of palliative sedation is to relieve intolerable suffering. Methadone has complex pharmacokinetics and multiple drug-drug interactions including antifungal agents. 2009 [B]). Barriers to good pain management in palliative care include discounting a patient's subjective measure of pain. A baseline EKG is prudent for patients who have longer life expectancies and will use methadone on a more chronic basis. topical. Opioid therapy for palliative care may consist of oral. A recent multicenter cohort study found no differences in survival time between those who received palliative sedation therapy compared to usual care (Maltoni.org 21 Institute for Clinical Systems Improvement . Opioid rotation. and they adversely affect their quality of life. not to hasten death. myths believed by both practitioners and patients about opioid therapy. which is usually dosed at two to four times daily.icsi. Palliative Sedation Therapy When pain. Methadone is experiencing a resurgence in the treatment of pain because of improved knowledge in equalanalgesic ratios when rotating from other opioids to methadone. When changing routes of administration from intravenous to subcutaneous. sometimes perceived as "drug-seeking behavior. The FDA has issued a "black box" warning for prescribers. a switch to hydromorphine. Pearson. The phenomenon occurs more frequently at higher daily doses (e. becomes intractable despite aggressive efforts. However. If symptoms of delirium and confusion are present and are attributable to opioids. over 30 mg) and with intravenous administration. a special license is required to prescribe methadone. Clinicians must monitor the patient carefully. 2008 [D]). especially neuropathic pain. palliative sedation therapy may be used. The concentration of the opioid may need to be increased for a subcutaneous infusion because of the drug volume that can be comfortably absorbed through the skin at a subcutaneous injection site.

congestive heart failure. Other studies have shown that while megestrol produces weight gain. Benzodiazepines are often helpful in the treatment of anxiety. a successful therapeutic trial of psychostimulants should be accompanied or followed by an antidepressant medication such as a serotonin-specific re-uptake inhibitor (Block. Although a variety of helpful depression assessment questionnaires and tools exist. Treatable causes of anorexia and cachexia should be identified and addressed. Grieving can be an appropriate response to loss.icsi. 2007 [R]. reduced quality of life. A significant minority of individuals manifest a paradoxical reaction to benzodiazepines. 1993 [A]). but persistence of the above symptoms mandates consideration of depression. and requests to hasten death (Block. Cognitive therapy may also be helpful in some circumstances. Evans. Psychological symptoms such as apathy. and patient and family education are considered the gold standard of treatment of depression in palliative care. depression. while cachexia refers to weight loss. Anorexia and Cachexia Anorexia refers to the loss of desire to eat. Progestational agents Return to Algorithm Return to Table of Contents www. and cognitive impairment. short follow-up periods. longer hospital stays. 2006 [R]). Diagnosing depression can be challenging because many of the typical somatic symptoms such as fatigue. although evidence from primary studies on the effectiveness of antidepressants at the end of life is poor. supportive psychotherapy. Simply asking a patient. 2000 [R]). In patients with a life expectancy of more than a few weeks. the clinical interview is still the gold standard for diagnosis of depression (Block. anhedonia and feelings of worthlessness and hopelessness may suggest the diagnosis. The clinician must inquire if the patient is at risk for suicide. Mulligan. There is no evidence that asking the patient about suicide increases the risk that the patient will carry out his or her plan. including in older and frail patients. AIDS. Both these symptoms are found in many severe medical conditions. Evidence regarding the pharmacologic treatment of anxiety in the palliative care setting is similarly limited (Block. Stimulation of appetite through the use of progesterones and corticosteroids may help. This may be preceded by educating the patient about the difference between clinical depression and appropriate reactive feelings to the situation. 2006 [R]. chronic obstructive pulmonary disease. 2006 [R]). and infections. the increase is due to fat and not lean muscle mass (Bossolal. 2007 [A]). One study suggests that doses of 160 mg to 800 mg per day of megestrol acetate have demonstrated a positive effect on appetite and food intake (Loprinzi. Some recent data suggest that depression is associated with a higher risk of death in cancer patients as well as decreased treatment adherence. Causes may include pain. especially of lean body mass. 2000 [R]). However. Non-pharmacologic measures for affective disorders are often beneficial and should not be overlooked. Studies in psychotherapy in depressed palliative care patients have shown equivocal results. It is important to differentiate grief from depression. which may significantly impair the patient's ability to continue with further therapy. some expert consensus statements recommend a low threshold for instituting treatment. gastrointestinal tract dysfunction.org 22 Institute for Clinical Systems Improvement . and high diversity of outcome measures used (Block.Algorithm Annotations Third Edition/November 2009 Palliative Care can exacerbate psychological distress. Chronic anxiety frequently responds to the use of serotoninspecific or serotonin-norepinephrine re-uptake inhibitors. A combination of antidepressant medications. Because antidepressant drug treatment is usually well tolerated. In depression. but data are limited by small sample sizes. 2006 [R]). Psychostimulants such as methylphenidate can produce a more rapid response and are well tolerated in most patients. it may take weeks to fully respond. serotonin-specific re-uptake inhibitors are drugs of first choice. insomnia and anorexia can be caused by the underlying medical illness or by normal grief. including cancer. "Are you depressed?" can be a useful screening tool and provides a reasonably sensitive and specific assessment of depression in patients with terminal illnesses (Block. chronic liver and kidney disease. becoming more agitated. 2000 [R]). Lorazepam and oxazepam are preferred since they do not have active metabolites.

Wilner. and be increased every two weeks until benefit is seen. doses of megestrol acetate should start at 160 mg daily. In some cases the patient is less troubled than the family by poor nutritional intake. and no survival benefit has been shown. Some patients. as well as underlying medical conditions themselves. 2008 [R]). premorbid status. The patient's preferences. including cancer. either declared at the time of treatment or previously documented in an advance directive.Algorithm Annotations Third Edition/November 2009 Palliative Care may be associated with an increased risk of thromboembolic events. no tolerance develops to constipation (Dalal. unless contraindicated. but are widely used and generally have minimal toxicity (Ramkumar. Corticosteroids may provide a temporary improvement in appetite and food intake. and help identify other ways in which the family can participate in caring for the patient. 2001 [R]). ANH may support an individual who otherwise cannot meet nutritional needs during therapy. particularly those with neurogenic bowels. are almost always indicated. Return to Algorithm Return to Table of Contents www. hypogonadism. 2006 [R]). 2002 [C]. can contribute to decreased gastrointestinal motility. patient's prognosis for the acute event. 2005 [M]. must be respected. dronabinol in AIDS and anabolic steroids in COPD and AIDS (Del Fabbro. In the context of a potentially treatable condition. Fiber supplements are not helpful in these patients. 2006a [R]). The role of medical nutrition and hydration (also known as artificial nutrition and hydration – ANH) is not clear cut. Stool softeners and stimulant laxatives. Minimizing dietary and consistency restrictions may tempt the patient to improve his or her intake. thalidomide in advanced cancer and AIDS. and religious and cultural factors warrant consideration (Lee. chronic lung or liver disease.icsi. and patients on scheduled opioids should prophylactically and routinely receive them on a daily basis. hypertension. or via enteral or parenteral routes) identified no evidence for clinical benefit in a variety of clinical settings. Theobald. 2003 [R]). and in those patients who may simultaneously benefit from the antiemetic and analgesic properties of the steroids. consistency or smell. or until side effects limit further dose escalations (Salacz. and adrenal suppression. because they cannot achieve adequate fluid intake for them to be effective. Offering small quantities more frequently throughout the day may also promote better intake. 2007 [M]). Most studies show that total parenteral nutrition in cancer patients receiving chemotherapy actually decreases survival and increases susceptibility to infection (Del Fabbro. Xing. In addition. Many commonly used agents lack high-quality evidence for effectiveness. There is no evidence that artificial nutrition and hydration improve outcomes in patients who have severe dementia. For most conditions. Immobility. As many as 95% of patients treated with opioids will experience constipation. there is scant information about improved quality of life. In order to minimize these adverse effects. Clinicians should explore the meaning of feeding in the context of the family's cultural and religious background. 2002 [R]). such as bisacodyl and senna. hyperglycemia. Polyethylene glycol solutions have been shown to be effective and safe in the general population but have not been well studied in palliative care. Constipation Constipation is a common and troublesome symptom for seriously ill patients. A recent meta analysis of randomized clinical trials studying the effectiveness of nutritional supplementation (either oral. Other agents showing some positive effects on appetite and weight gain include mirtazapine in depression. decreased oral intake. because of significant side effects. these drugs should probably be reserved for the terminally ill. 2006a [R]. peripheral edema. Patients sometimes describe poor appetite when presented food that is unappealing in appearance. However. and medications. and critical care settings (Koretz.org 23 Institute for Clinical Systems Improvement . While tolerance to other opioid side effects such as nausea and sedation develops quickly. and all opioids are associated with constipation. benefit from scheduled suppositories or enemas.

vomiting. In one palliative care unit where objective assessment of cognitive function was not performed. There are no specific tests. and oxygenation. but evaluation should include review of all medications. sensory impairments and the existence of chronic health problems are factors increasing the risk for delirium. as well as 70% to 87% of elders in the ICU setting (Inouye. and recent alcohol or drug use. 2006b [R]). it is a common problem in hospitalized patients. nausea. Treatment of delirium requires correction of underlying abnormalities. which allows laxation usually within four hours if the cause of constipation is due to opioid therapy and after other methods have failed. There is little evidence supporting the use of other antipsychotic agents. metabolic abnormalities and other acute illness is necessary. with disorientation and fluctuations of attentiveness. 2008 [B]). 2006b [R]).Algorithm Annotations Third Edition/November 2009 Palliative Care Patients taking opioids may exhibit additional gastrointestinal symptoms such as bloating. In some elderly patients. with the best evidence base supporting effectiveness. along with constipation. Delirium is a clinical syndrome. This may represent opiate-induced bowel dysfunction. including long-term care facilities and end-of-life settings. Patients often present with hyperactivity. not a disease in itself. This is in contrast to dementia. or opioid-induced constipation. but they can be useful adjuncts if haloperidol alone is not effective. Benzodiazepines are not recommended for monotherapy because of the risk of paradoxical stimulation. hypoxia and other metabolic abnormalities. delirium episodes went undetected by clinicians (physicians and nurses) in 20% to 23% of cases (Del Fabbro. with a prevalence of up to 24% upon admission and an overall incidence of up to 50% during the hospitalization. hypoactive delirium marked by lethargy is equally serious. Methylnaltrexone is administered as a subcutaneous injection that may be administered every other day but no more frequently than daily (Thomas.S. (NOTE: the U. Delirium Delirium is an acute confusional state characterized by disordered attention (arousal) and cognition. especially psychoactive drugs. Some settings present an even greater risk: 15% to 50% of older patients may develop delirium postoperatively.) Return to Algorithm Return to Table of Contents www. especially when the drug is administered intravenously or in higher doses than recommended. While it occurs in other settings. drugs.org Institute for Clinical Systems Improvement 24 . Dementia See Annotated Bibliography. and gastroesophageal reflux. Particularly in elders. Its etiology is usually multifactorial and includes central nervous system lesions. Lower doses are recommended in the elderly.icsi. pain. polypharmacy. psychotropic medications may be used with caution. Clinicians commonly fail to recognize delirium and may misdiagnose it as depression or dementia. including vital signs. This is a constellation of symptoms mediated through peripheral mu receptors. Functional dependence. 2006b [R]). However. fluid and electrolyte abnormalities. Methylnaltrexone is an antagonist for peripheral mu receptors. hydration status. 2006 [R]). The incidence rises with age. as delirium may be reversible in up to 50% of cases in palliative care units. delirium may be a result of poorly managed pain (Del Fabbro. When behavioral symptoms threaten the safety of the patient or the ability to provide therapy. are hallmarks of delirium. delirium may be the only harbinger of serious illness or complications. oversedation and prolongation of delirium. It is particularly prevalent in patients with preexisting dementia. Haloperidol remains the first drug of choice. general physical evaluation. agitation and combativeness. Acute changes in mental status. A focused search for infection. Food and Drug Administration informed health care professionals that the warnings regarding the use of haloperidol have been updated stating that Torsades de Pointes and QT prolongation have been observed in patients receiving haloperidol. which is mainly a disorder of cognition without significant deficits in arousal or attention (Del Fabbro.

and one must be cautious about possible bronchospasm with the first dose. such as simple but firm communication. and managing symptoms. Morphine is usually considered the opioid of choice for dyspnea in patients with cancer and may be administered by the oral.Algorithm Annotations Third Edition/November 2009 Palliative Care No good evidence exists for the use of other psychotropic drugs for delirium. maintaining cool room temperatures. sublingual. 2006b [R]). cardiac disease. the Multidimensional Fatigue Symptom Inventory. Diarrhea Diarrhea can be caused by the underlying illness. and the presence of family members (Del Fabbro. reassurance. Benzodiazepines. 2006 [R]). Fatigue may be a consequence of the primary illness or of the treatments used (such as radiation and chemotherapy). Dyspnea Dyspnea can be defined as the subjective sensation of difficult breathing and is a common finding in patients with cancer. However. Fatigue Fatigue may be defined as decreased vitality in physical and/or mental functioning. subcutaneous or intravenous route. 2007 [M]). Delirium is a poor prognostic indicator. Return to Algorithm Return to Table of Contents www. improving air circulation. buccal. psychological support and using relaxation techniques. Opioids may decrease the ventilatory response to hypoxia and hypercapnia (in patients with these signs) and can decrease anxiety and the subjective sensation of shortness of breath without reducing oxygen saturation. 2006b [R]). There are assessment tools for fatigue. pulmonary function tests. Pharmacologic methods include oxygen. medications and infections. A recent review found no wellvalidated measurement scales for this population (Dorman. and state that rest fails to resolve the fatigue. opioids and anxiolytics. There was a significantly lower survival rate over time with these patients – the median survival time was 21 days for patients with delirium and 39 days for patients without this syndrome (Caraceni. In one European study of 393 advanced cancer patients in palliative care programs.icsi. Limited information is available on nebulized morphine and its efficacy. Inhaled corticosteroids may also be beneficial for patients who have an inflammatory component to their dyspnea (such as asthma or COPD) or have lung cancer. Patients may identify increased tiredness. When present. this can be difficult to treat. some examples include the Memorial Symptom Assessment Scale. reality orientation including an easily visible clock. as the effect of gut flora on fecal material can cause liquefaction and subsequent passage of loose stool. Fatigue occurs in up to 75% of patients with cancer and AIDS (Strickland.org 25 Institute for Clinical Systems Improvement . and the Profile of Mood States. such as lorazepam. the Edmonton Functional Assessment Tool. In-hospital mortality rates for patients with delirium range from 22% to 76%. The presence of diarrhea does not exclude the possibility of bowel impaction. and the one-year mortality rates approach 40% (Inouye. 2004 [R]). Oximetry. 2000 [D]). patients need to be monitored for sedation when combining benzodiazepines and opioids (Del Febbro. Multiple published studies support the benefits of opioids for dyspnea. over 27% were noted to have delirium. and an individual may require retreatment if symptoms persist. Treatment of dyspnea should be focused on treatment or amelioration of the underlying cause. although the effectiveness of these methods in the palliative care population has not been well studied. when possible. Non-pharmacologic treatment may include repositioning. The endpoint for managing dyspnea should be the patient's self-report of diminished breathlessness. Fatigue has a significant impact on quality of life and can be very distressing to the patient. Diarrhea due to Clostridium difficile must be excluded. Non-pharmacologic methods may also be beneficial. advanced respiratory disease and AIDS. chest imaging and other diagnostic evaluations should be performed only if the results would change therapy. are useful when anxiety is a significant contributing factor. Neither the patient's respiratory rate nor the level of oxygenation consistently predicts the severity of dyspnea.

Advantages of hypodermoclysis include simplicity. Mild exercise for brief periods may be beneficial in reducing the perception of fatigue for some patients. histamine and substance Return to Algorithm Return to Table of Contents www. Treatment consists of pharmacologic and non-pharmacologic treatment. along with physical and mental function. but recurrent thoracenteses and paracenteses require frequent clinic appointments and discomfort. and scheduling rest periods during the day. 2007 [R]). histamine-2 blockers or antacids. serotonin. lower cost of equipment. psychological distress and vestibular stimuli. Nausea and vomiting can have a profound effect on quality of life. and support for certain treatments is based on expert opinion rather than primary studies (Dalal. Causes include drugs. Psychostimulants such as methylphenidate. Clinicians should counsel patients to prioritize activities and pace themselves accordingly. stimulating agents should be administered in the morning. and hepatic and renal failure. 2009 [R]).icsi. psychostimulants and corticosteroids. 2009 [D]. There is a paucity of data on this subject in the palliative care population.Algorithm Annotations Third Edition/November 2009 Palliative Care Managing fatigue includes treating the underlying causes (such as anemia or hypoxia) if possible. as well as using non-pharmacologic and pharmacologic therapy directed toward the symptom itself. uremia. Non-pharmacologic treatment includes patient education about fatigue. Easy interventions include avoiding strong smells/perfumes. corticosteroids should be reserved for terminally ill patients who may also have nausea and vomiting. hypodermoclysis and intravenous administration were equally effective. which may consist of proton pump inhibitors. should be eliminated if possible. hypodermoclysis may be a reasonable option for delivery of medications and modest amounts of fluid (Kamal. Triggers. 2006 [R]). AIDS. and limiting oral intake during periods of frequent emesis. modifying the activities of daily living. while evaluating and treating the underlying cause. Pharmacologic treatment of fatigue includes erythropoietin. 2004 [R]). 2001 [R]). Neurotransmitters implicated in nausea and vomiting include dopamine. Hypodermoclysis Hypodermoclysis is a technique that allows subcutaneous administration of fluids and medications. 2007 [M]). less discomfort for the patient. and fewer complications (Remington. frequently eating small meals. Acupuncture and acupressure may provide some benefit for chemotherapy and surgical patients (Wood.org 26 Institute for Clinical Systems Improvement . Conversely. such as smells and drugs. gastrointestinal obstruction. Diet and lifestyle changes with or without drug therapy. Medications that may make the patient more tired should be administered at bedtime rather than in the morning. dextroamphetamine and modafanil may be beneficial in managing fatigue and are the most commonly used pharmacotherapy for managing fatigue when no correctable underlying cause can be ascertained (Strickland. Monsky. Non-pharmacologic treatment may include relaxation and transcutaneous electrical wave stimulation. (Sasson. A detailed description of the technique can be found in the article. Due to significant side effects. 2009 [D]). Recent studies show that indwelling catheters are well tolerated and allow more convenient drainage (Fleming. Drainage can relieve symptoms. Erythropoietin should be reserved for those patients with anemia and erythropoietin deficiency due to the high cost of treatment and lack of evidence of benefit in other clinical situations. A recent review of the English-language literature found that for treatment of mild to moderate dehydration. For patients lacking vascular access. Nausea and Vomiting Nausea and vomiting can be debilitating in patients with cancer. the cornerstone of treatment is pharmacologic therapy. Malignant Ascites and Pleural Effusions Some patients with end-stage malignancies develop refractory ascites and pleural effusions. Gastroesophageal Reflux Disease The goals of treatment for gastroesophageal reflux disease (GERD) are to alleviate the causes and symptoms and to prevent complications. However. may be considered.

Iowa. Swedish and Tibetan in the United States. mechanoreceptors and chemoreceptors located in the gut. haloperidol). Corticosteroids are effective as antiemetics themselves and may augment the effect of other antiemetics. 4. Metoclopramide may increase upper gastrointestinal motility in addition to being an antiemetic. 1. Wisconsin. Stereotyping should be avoided.org Institute for Clinical Systems Improvement 27 .S. Hmong. The 2000 U.S. As the Upper Midwest becomes more culturally diverse. while peripherally.5% American-Indian/Alaskan native and finally. the likelihood of health care professionals providing end-of-life care for members of other cultures increases. census indicates 65% of the population identify themselves as White. Amharic and Tigrinea). as generalizations about specific cultures are not always applicable to specific patients. 13% Hispanic. Cultural Aspects of Care Key Points: • • • • Patient and family reactions to serious illness and decisions about complex medical care are influenced by cultural factors. their indiscriminate overuse and increased cost is a significant issue.S. Minnesota ranks third in the percentage of Laotian. while 13% identify as Black or African American. Specific cultural assessment promotes patient/family-centered decision-making and offers the opportunity to identify care preferences. which block dopamine either peripherally or centrally. According to the 2000 U. Census Bureau. the provider should utilize professional medical interpreters. 2006 [R]). While serotonin receptor antagonists appear to be effective for acute nausea and vomiting due to chemotherapy. Suggested Medications Based on Cause of Nausea and Vomiting Gastrointestinal Stimuli Metoclopramide Serotonin antagonist Dopamine antagonist Proton pump inhibitors Chemical Stimuli Metoclopramide Corticosteroids Dopamine antagonist Olanzapine Histamine antagonist Serotonin antagonist Psychological Stimuli Benzodiazepines Dopamine antagonist Vestibular Stimuli Histamine antagonist Adapted from Strickland. promethazine) and butyrophenones (droperidol. census. Ojibwa. Minnesota has the highest percentage of speakers of Cushite (Somali. Return to Algorithm Return to Table of Contents 6.icsi.Algorithm Annotations Third Edition/November 2009 Palliative Care P. Whenever possible. Dopamine antagonists used to treat nausea and vomiting include phenothiazines (prochlorperazine. 2004. liver and viscera play an important role. Dronabinol appears to be better tolerated in younger patients. North and South Dakota. a list of most common languages spoken at home numbers at least 48 to 50 in each of the following states: Minnesota.5% Asian-Pacific. Return to Algorithm Return to Table of Contents www. Mande and Swahili speakers (U. Finnish. 5% identify themselves as bi-ethnic.

providers should consider that members of many cultural groups prefer that family members. The assessment should include: • • • • • • • Locus of decision-making Preferences regarding disclosure of information Truth telling and decision-making Dietary preferences Language. wide variation in beliefs. Return to Table of Contents Return to Algorithm www.icsi. When considering therapeutic options. rather than patients. 2005 [R]): • • • • • Many ethnic groups prefer not to be directly informed of a life-threatening diagnosis. and dying and in guiding decisions people make about health care. suffering. 2001 [D]). in fact.Algorithm Annotations Third Edition/November 2009 Palliative Care Patient and family reactions to serious illness and decisions about end-of-life care are influenced by cultural factors. make treatment decisions. But providers should avoid stereotyping and the assumption that we know what any one individual thinks or does because we assume we know what people of that group tend to think. With this in mind. In cultural groups in which patients are not directly informed about a serious prognosis. Cultural assessment should be an integral component of the palliative care plan. attitudes and behaviors within every cultural group (Kagawa-Singer. family communication Perspectives on death. When provider-patient communication occurs through a translator. Several key clinical recommendations that providers should consider have been identified (Searight. There is. providers should respect the important role culture plays in shaping the way people make meaning of illness. funeral and burial rituals Specific cultural assessment promotes patient/family-centered decision-making and offers the opportunity to identify care preferences. trained health care translators make fewer errors than untrained translators. family members may want the provider to discuss the patient's condition with family members only. suffering and grieving Physical care of the deceased.org Institute for Clinical Systems Improvement 28 . Direct discussions of advance directives and therapeutic support levels may be undesirable in situations in which they are viewed as potentially harmful to a patient's well-being.

“When did you emigrate to the experience with discrimination or lack United States. 2001 [D]): Relevant Information Attitudes of patients and families What attitudes do this ethnic group in general. JAMA 2001. community or religious leaders. and family members? Used with permission. what is the symbolic meaning of the particular disease? Ask questions such as: “What is important for us to know about your faith or spiritual needs?” “How can we support your needs and practices?” “Where do you find the strength to deal with this experience?” Beliefs Context Ask questions about the historical and Ascertain specific information by political context of their lives. Environment What resources are available to aid the effort to interpret the significance of cultural dimensions of a case.286:2999 Copyright 2001 American Medical Association. can help providers evaluate cultural issues and influences (KagawaSinger. the afterlife.icsi. Return to Algorithm Return to Table of Contents www. refugee or “Where were you born and raised?” immigration status. All rights reserved. For example. especially those relating to the meaning of death. and the patient and family in particular. your experience coming to a new and degree of integration within their country? How has your life ethnic community changed?” “What language would you feel most comfortable speaking to discuss your health concerns?” Life history assessment: “What were other important times in your life. or is the approach family centered? Learn about the dominant ethnic groups in your practice: How are decisions made in this cultural group? Who is the head of the household? Does this family adhere to traditional cultural guidelines or do they adhere more to the Western model? Identify religious and community organizations associated with the ethnic groups common in your practice (hospital. poverty. the possibility of miracles? Questions and Strategies Educate yourself about attitudes common to the ethnic groups most frequently seen in your practice. health care workers from the same community.org 29 Institute for Clinical Systems Improvement . social worker and chaplains may be able to help you in this effort). Determine attitudes of your patient and their family. languages spoken. have toward truth telling about diagnosis and prognosis? What is their general attitude toward discussions of death and dying? How reflective are their practices of traditional beliefs and practices? What are the patient’s and family’s religious and spiritual beliefs. and what has been of access to care. including translators.Algorithm Annotations Third Edition/November 2009 Palliative Care The ABCDE tool. described below. and how might these experiences help us to understand your situation?” Decision-making style What decision-making styles are held by the group in general and by the patient and family in particular? Is the emphasis on the individual patient making his or her own decisions. asking the following: including place of birth.

however. censorship of sensitive or taboo topics. Difficulty in improving pain and other physical symptoms in spite of aggressive treatment can be a sign of significant psychological. • • • • • • • A learning module on cultural and spiritual sensitivity and a quick guide to cultural and religious traditions can be found at this Web address: http://www. 2006 [R]. is less desirable due to misinterpretation of medical phrases. 2005 [R]) Consider meeting with the interpreter after the discussion to allow for any necessary debriefing. patient and family members at the outset of a conversation or care conference that everything spoken will be translated word for word.Algorithm Annotations Third Edition/November 2009 Palliative Care Whenever possible the provider should utilize professional medical interpreters. Establish with the interpreter. The following recommendations are suggested for providers utilizing interpreters (Norris. Return to Algorithm Return to Table of Contents www. 2006 [R]). Return to Algorithm Return to Table of Contents 7. anxiety disorders in terminally ill cancer patients range from 15% to 28%. 2006 [R]). It may seem obvious to say psychological and emotional issues are present near the end of life. with increasing symptoms as the disease progresses (Chochinov. Also see Annotated Biblography in this guideline. Use non-verbal forms of education such as drawing or showing pictures. Routine ongoing assessment of a patient's psychological status is critical to provide quality palliative care (Block.edu/pfes/cultureclues. but too often these issues and their symptoms go undetected and untreated (Block. After making a complete statement. and approximately 25% of all cancer patients will experience severe depressive symptoms. Psychological treatment and interventions are based on goals in the plan of care. For example. Avoid using jokes or humor because they may be misunderstood or considered offensive. emotional or spiritual issues. Providers should speak to and look at the patient/family rather than the translator: "Where is your pain?" rather than "Can you ask him where he hurts?" (Searight. If medical interpreters are not available.washington. providers should pause to allow for translation.professionalchaplains. 2005 [D]): • Meet briefly with interpreters prior to and after delivery of bad news or difficult discussions to help prepare the interpreter and to allow the interpreter to provide information about the patient. Psychological Aspects of Care Key Points: • • • Regular ongoing assessment of a patient's psychological status is important. the provider may need to use bilingual health care workers or family members.icsi. Werth. 2006 [R]). family and culture.org/uploadedFiles/pdf/learning-culturalsensitivity.org 30 Institute for Clinical Systems Improvement . This. This further burdens patients and may prolong suffering and undermine their quality of life. and the tendency to filter or summarize discussions rather than translate them directly.htm.pdf The University of Washington's "Culture Clues" tip sheets contain information for clinicians about the needs and preferences of patients from diverse cultures: http://depts. Understand that not all tools (such as pain scales) are universal and providers need to use terms that are culturally relevant.

Poor communication among patient. nervousness. communication with family and friends and discussion/decision-making on advance treatment plans all fall under the domain of social aspects of care. Social Aspects of Care Key Points: • • The interdisciplinary team includes professionals with specific skills in assessment and development of a social care plan. It is important to distinguish depressive disorders from normal grief. 2001 [R]). #59 Dealing with the Angry Dying Patient. friends. Financial concerns. guilt and suicidal ideation strongly suggest depression (Periyakoil. Conduct care conferences specific to developing and reviewing the social care plan. Patients come to advanced illness with issues of worry. Make referrals to meet social needs and remove barriers to care. Recommendations: • The interdisciplinary team of professionals including social workers should have patient-population specific skills in assessment and development of a social care plan. constipation. however.edu.eperc. 2005 [R]). caregiver coping. anhedonia. Practitioners must be aware of psychological symptoms of depression and anxiety. less is known about patients with end-stage cardiac. anxiety. (See Annotation #5. More information can be found in the following Fast Facts at the Web site http://www. Psychosocial issues are more difficult to evaluate and address if the patient has distressing or poorly controlled physical symptoms (Strickland. renal and neurologic disease (Block.Algorithm Annotations Third Edition/November 2009 Palliative Care Pain and other physical symptoms are commonly the initial focus of treatment. AIDS and geriatric patients. However. nausea and vertigo. and #186 Anxiety in Palliative Care – Causes and Diagnosis provide up-to-date easy to access references for psychological aspects of palliative care. spouses.g. 2004 [R]). significant hopelessness. Return to Algorithm Return to Table of Contents 8. insomnia. PHQ-9) may be helpful. Children.mcw.icsi. Questions like "How are you coping?" "What are you doing to cope?" "Are you having trouble thinking?" "Are you depressed?" "Do you think about ending your own life?" or "Do you feel your situation is hopeless?" are good questions. #07 Depression in Advanced Cancer. Lack of knowledge about the social aspects of care influencing the patient can frustrate health care providers regarding decisions or lack thereof that the patient makes. Neurovegetative signs such as somatic distress. no screening tool for depression has been validated for palliative care. pulmonary. and decreased concentration may occur as a result of the underlying illness. employers and even health care providers are all affected by an individual patient's condition. grief or depression.") Psychological symptoms may also present as physical symptoms such as pain." defined in its broadest sense. Although some literature exists that discusses the psychological issues facing terminally ill cancer.. sleep and appetite disturbances. parents. Refer to the ICSI Major Depression in Adults in Primary Care guideline for more information about depression and the depression assessment tool (PHQ-9). family and health care providers undermines effective decision-making (Curtis. neighbors. panic.org 31 Institute for Clinical Systems Improvement . paranoia and lack of energy. The impact of a chronic progressive disabling disease extends beyond the patient to the "family. 2000 [R]). #145 Panic Disorders at the End of Life. "Physical Aspects of Care. co-workers. Difficulty in improving physical symptoms should lead one to look at psychological or other causes. worthlessness. Use of standardized assessments to diagnose (e. Return to Table of Contents • Return to Algorithm www.

medications. lines of communication and need for counseling for self and family. The comprehensive social care plan should address the social.Algorithm Annotations - Third Edition/November 2009 Palliative Care The comprehensive assessment should include family structure and geographic location. Return to Table of Contents • • Return to Algorithm 9. 2007 [D]. Religious and Existential Aspects of Care Key Points: • • • Spirituality helps patients cope with illness. Clear and honest communication. This includes but is not limited to transportation for treatment and appointments. 2001 [R]). access to transportation. In situations where loved ones are making decisions regarding withdrawal of life support for patients. The spirituality of many such people is embodied in and through a particular religious faith or tradition. and legal issues. It is important for caregivers to attend to patients' spiritual needs and concerns. sexuality.org 32 Institute for Clinical Systems Improvement . work and school settings. perceived social support. community resources. Given this definition. Understand that advance care planning is rarely fixed in time with specific treatment decisions but rather a dynamic process emerging from the clinical context of the disease and the social context of the patient (Pendergast. relationships and family dynamics. and assessment of the spiritual care needs of family members (Gries. there are reports that suggest that family members feel more satisfied and supported in the decision-making process where there is a family conference exploring patient's wishes. A spiritual assessment should be included in the overall plan of care. caregiver availability. focused on the strength of the human spirit or human relationships. caregiver service options to meet patient's needs at home. physician recommendations for withdrawing life support.icsi. financial resources and community clubs/services for support. practical and legal needs of the patient and caregivers based on the results of the comprehensive assessment outlined above (National Consensus Project. counseling. finances including filing for disability and ability to pay for medications and treatments. - • Conduct regular patient and family care conferences with the interdisciplinary team to develop and review the social care plan. trust over time. Utilize an interdisciplinary team with trained and credentialed chaplains to help provide patient-centered spiritual care and support. Also see Annotation #4. 1998 [X]).capc. living arrangements. Further information and documents of support can be found at http://www. existing social and cultural network. Puchalski 2002 [D]). Spiritual. purpose and direction to our lives (McCurdy. 2008 [B]). dying and death and contributes to improved quality of life (Balboni. intimacy. 2009 [R]).org/. "Assess Patient's Palliative Care Needs and Establish Goals of Care. centering on a belief in God or a higher power. it can be said that everyone is spiritual in one form or another. A Gallop poll in 1999 found that some people's spirituality is theistic in nature. Spirituality involves our relationship to whatever or whoever gives meaning. And yet others' spirituality is a blend of the theistic and humanistic." Make referrals to meet identified social needs and to remove barriers to care. and working within the patients' most important relationships are needed to improve the quality and outcome of this process. Return to Algorithm Return to Table of Contents www. Often the social worker is involved in coordinating this conference and its attendees. needed equipment and nutrition. Other people's spirituality is humanistic in nature. medical decisionmaking/Advance Directives and quality of life.

meaning. A study with hospice patients found that those who drew comfort from their spiritual beliefs were happier. value and relationships such as: Meaning: • • • Value: • • • • • Do I still have value despite changes in my appearance. productivity. 1996 [D]). guilt. and life completion tasks (National Consensus Project. more satisfied with their lives and had diminished pain (Yates. But only 10%-20% of physicians discuss these issues with their patients (King. Listen to patient's fears. legacy. purpose. Spirituality has been shown to help people cope with illness and the experience of dying. Up to 77% of patients identify the need for spiritual issues to be considered as part of their medical care. 2002 [R]) • • Offer compassionate presence – strive to be present with and attentive to patients. In one survey. forgiveness.icsi.Algorithm Annotations Third Edition/November 2009 Palliative Care Illness and the prospect of dying can impact the meaning and purpose of a person's life (Pulchaski. spiritual beliefs can sometimes result in negative coping. 2009 [R]). 1994 [D]). 1998 [D]). independence? Is there anything valuable about me that will persist beyond death? Do I need to forgive or be forgiven by anyone? Am I loved? By whom? Will I be remembered after I die? Will I be missed? (Sulmassy. 1987 [D]). 1999 [D]). Return to Table of Contents Return to Algorithm www. As people face serious illness or death. Thus illness and dying have a spiritual dimension and are often perceived by patients as spiritual experiences (Reed. 2002 [R]) Why is this happening to me? Why now? What is the meaning of my illness. questions or distress. For example: 93% of patients with gynecologic cancers said that their spiritual beliefs helped them cope with cancer (Roberts. assessment of hopes and fears. they often ask questions of meaning. my death? What will happen to me after I die? Relationships: Other spiritual issues and concerns encountered in palliative care include: life review. On the other hand. 2002 [R]). 1981).org 33 Institute for Clinical Systems Improvement . beliefs about afterlife. or who had excessive guilt or who prayed for a cure and were unable to resolve their anger when a cure didn't occur experienced more depression and poorer quality of life (Pargament. For example. Attending to a patient's spirituality can deepen the relationship between patient and provider and build trust. Relate to patients not only as a professional expert but also as a fellow human being. patients who understood their illness as a punishment from God. Puchalski. hopes. my suffering. 65% of patients in an outpatient clinic reported that a physician's inquiry about spiritual beliefs would strengthen their trust in that physician (Ehman. A 1997 survey by the Gallup Institute found that people overwhelmingly want their spiritual needs addressed during their dying process. It is important for caregivers to attend to patient's spirituality. 2006 [X]. Physicians and other care providers can attend to patient's spiritual needs and concerns in the following ways: (Puchalski. Spirituality is an important but often neglected component in holistic care of patients. especially any spiritual concerns. pain and concerns – listening is a powerful healing tool.

icsi. Post. practices Effects of beliefs on medical care and end-of-life issues Do you have spiritual beliefs or Faith that have helped you cope with difficult times in the past? Are these beliefs important to you. 2001 [R]). 2002 [R]. 2001 [R]) (Puchalski. 2006 [D]) is a simple. strength. connection Member of an organized religion? Personal spirituality. Return to Algorithm Return to Table of Contents www. comfort. your spirit? Where does peace come from for you? Does that peace come from a spiritual or religious source? (Sulmassy. 2000 [R]) S: P: I: R: I: T: • (Maugans. meaning. They offer interfaith support to all who are in need and have specialized education to mobilize spiritual resources to help patients cope more effectively (VanderCreek. peace. love.Algorithm Annotations • Third Edition/November 2009 Palliative Care Assess spiritual needs and concerns – asking patients about hope and peace (Steinhauser. brief yet effective way to assess spiritual concerns. should keep spiritual discussions patient centered.org Institute for Clinical Systems Improvement 34 . 2006 [X]) • There are a number of spiritual assessment tools created for use by providers in the clinical setting. 1996 [R]) Utilize clinically trained chaplains as members of the interdisciplinary health care team – chaplains are experts in spiritual care. Some of these tools include: H: O: P: E: F: I: C: A: Sources of hope. and should never proselytize or impose beliefs onto a patient (Puchalski. 2000 [X]). Do you have hope? Where does your hope come from? What are you hoping for now as you look ahead? Are you at peace with the care decisions you've made? Do you feel at peace – in your heart. Working with and making referrals to these spiritual care providers is an important aspect of holistic care. Physicians and other providers should always be respectful of a patient's spiritual beliefs. and how do they Influence the way you care for yourself? Are you involved in a spiritual or religious Community or Church? How would you like your health care providers to help you Address spiritual issues and concerns? Spiritual belief system Personal spirituality Integration with a spiritual community Ritualized practices and restrictions Implications for medical care Terminal events planning (Anandarajah.

that a patient is able to make medical decisions relative to the discussion for themselves. Informed consent for any treatment or plan of care requires either a patient with decision-making capacity or an appropriate surrogate decision-maker. a surrogate is needed. and communicate a treatment preference (i. Most state power of attorney for health care documents require a HCP to document that a patient has lost decision-making capacity for the surrogate to become the legal agent for medical decisions.g. Return to Algorithm Return to Table of Contents www. • • The patient's goals.g. preferences and choices are respected within the limits of applicable state and federal laws. To be deemed decisional. preferences and choices should form the basis for the plan of care. Thus a moderately demented patient may be able to make some decisions (e. requiring a higher level of decision-making capacity. decision-making capacity (aka decisional) refers to a HCP's determination. Is the logic the patient uses to arrive at the decision "not irrational"? One wants. This sliding scale view of decisionality holds that it is proper to require a higher level of certainty when the decision poses greater risk. chemotherapy for colon cancer)..org Institute for Clinical Systems Improvement 35 . Decision-making capacity is: Understanding. "Can you repeat to me the options for treatment I have just discussed with you?" "Can you explain to me why you feel that way?" Task specific. When a patient lacks this ability. Some decisions are more complex than others. the comatose patient by definition is not decisional). Logical.. benefits and alternatives of what is being proposed? The patient does not have to agree with your interpretation but should be able to repeat what you have said. The patient's goals. although a health care provider's (HCP) opinion carries a large amount of weight in a competency hearing.g. Note: Severe depression or hopelessness may make it difficult to interpret decisionality. Does the patient truly understand the information about the risks. evaluate. Informed consent is based on the principle that patients should be allowed to make decisions for themselves. In contrast.e. a HCP must be satisfied that a patient is able to: • • • receive information (e. and form the basis for the plan of care.. antibiotics for pneumonia) but not others (e. must be awake.. based on clinical examination.Algorithm Annotations Third Edition/November 2009 Palliative Care 10. Deciding if the patient is decisional means weighing the degree to which the patient has decision-making capacity against the objective risks and benefits to the patient. rather than an underlying mental or physical illness. consult psychiatry for assistance with this or other complex cases. Note: Competency is a legal term referring to a decision made by a judge. but not necessarily oriented). to make sure the patient's values are speaking. Informed consent for any treatment or plan of care requires a patient with decision-making capacity or an appropriate surrogate decision-maker. Ethical and Legal Aspects of Care Key Points: • Advance care planning. Ask.icsi. including the designation of a health care agent and completion of a health care directive is helpful in documenting and ensuring that a patient's wishes will be respected. deliberate and mentally manipulate information. as much as possible. They should be respected within the limits of applicable state and federal laws. The following points expand on the concept of decisionality.

One commonly used definition is that a futile intervention is one that a) is unlikely to be of any benefit to a particular patient in a particular medical situation. the main focus of Return to Algorithm Return to Table of Contents www. Medical futility can be easily misunderstood as health care rationing. policymakers. Avoid using the term "futility" in discussion with patients/families. HCPs. Is the decision consistent with the patient's values? If there is a change in the patient values. They were equally divided between those with religious objections. For critically ill patients who ultimately died during hospitalization. While economic issues may impact shared decision-making. The public. and b) will not achieve the patient's intended goals. Patients and families may have different perspectives that must be recognized and acknowledged. is helpful in documenting and ensuring that a patient's wishes will be respected. and those who either doubted the ability of physicians to make these predictions or who needed more information from other sources (Zier. based on semistructured interviews with surrogate decision makers for critically ill patients.org 36 Institute for Clinical Systems Improvement . 2003 [A]). decisionality may be regained. speak in terms of benefits/ burdens of treatment and patient. 2001 [R]) "Medical Futility"/Low-Yield Therapy The term "medical futility" is commonly used by HCPs to discuss the appropriateness of a medical treatment option. as the perception of benefit is highly subjective. ethicists and the medical profession have been unable to agree on a clear. Ethics committees.or family-specific goals of care. 2005 [R]) Advance Care Planning Advance care planning. The sticking point in all futility definitions is the concept of benefit. concise definition of futility that can be applied to all medical situations. Is the patient able to make a decision with some consistency? This means not changing one's mind every time one is asked. the ultimate question is not "How much does this therapy cost?" but rather "Do the advantages of this therapy outweigh the disadvantages in a given patient?" HCPs are not legally. Consistent. Suggestions • • • Check with your health care institution about the presence of an existing futility policy. While the process of advance care planning often results in the completion of a written health care directive. Involve a palliative care and/or ethics consultant in any situation where "futility" will be invoked as a process step in formulating decisions. hospitals and local/state medical organizations can provide resources to understand medical futility and professional responsibilities in one's practice area. 2009 [D]).icsi. can the patient explain the change? (Arnold. Schneiderman has shown lower utilitzation of ICU resources in patients when ethics consultation occurred (Schneiderman. professionally or ethically required to offer medically futile treatments. A multicenter qualitative study. found that 64% of the surrogates did not fully accept the physicians' determinations of physiologic futility.Algorithm Annotations Third Edition/November 2009 Palliative Care Time specific. including the designation of a health care agent and completion of a health care directive. a patient may not be decisional. while after treatment. rather. Reframing the discussion from "futility" to a clarification of goals of care allows the clinician to identify potential disagreement and customize discussions to address these areas. patients and families often have very different views on what is potentially beneficial. (Cuezze. as defined by the standard of care of the medical community. Most literature on futility is based on the perspective of HCPs. When encephalopathic.

the patient/surrogate (Dunn. 2008 [C]). In reality. 2007 [R]) The major advantages of the POLST form over standard advance directives is that. together with a patient or surrogate decision-maker. 2002 [A]). Written advance directives are legal in every state. Advance care planning consists of: • Designation of a health care power of attorney (aka durable power of attorney for health care.Algorithm Annotations Third Edition/November 2009 Palliative Care advance care planning is on the discussion between the patient and health care agent regarding the patient's wishes. The actual form should consist of these sections: • • • • • CPR decision Medical intervention decisions Antibiotics Medically administered nutrition Signatures from the health care provider and if possible. Both forms are based on communication between the patient and surrogate (the health care agent or other legally designated decision-maker) and health care providers. it is an HCP's order sheet based on the patient's current medical condition and wishes. • There are programs designed to support and spread the use of advanced care planning (Schwartz. It is intended to summarize any advance directive. when adopted as the community standard. Minnesota is currently adopting a statewide version of POLST.org). Writing a formal health care directive – a written document in which a patient's wishes regarding the type or extent of medical treatment to be administered or withheld are described. advance care planning document. It facilitates informed medical decision-making by communicating an individual's wishes regarding care across health care settings. Ongoing communication between the patient and their health care power of attorney (POA) is imperative so that the POA can participate fully as an advocate when the patient is no longer able to communicate. laws and forms vary from state to state. and more likely to be honored by all health care providers when needed (www. It is important to remember that travelers should be aware of differing laws in whichever state they plan to travel. A health care directive only goes into effect when the patient becomes unable to communicate their preferences. The POLST (Physician's Order for Life-Sustaining Treatment) is one form of a health care directive that was designed to help HCPs honor the treatment wishes of patients in the form of an actual HCP order. the information is clear. Barriers to completing advance directives: • Many HCPs believe it is not appropriate to begin advance care directive planning on an outpatient basis. unambiguous. however.polst. A DNR form is not a sufficient health care directive (Levy.) – The patient appoints someone to make decisions about his/her medical care if he/she cannot make those decisions. health care agent. A similar form is called Medical Orders for Life Sustaining Treatment (MOLST). See Resources Available for more information. flexible.icsi. and bring a copy of their document with them so that you may present your health care directive to a facility where you intend to receive medical care. POLST was developed as a onepage. etc. multiple studies have shown that patients want their HCPs to discuss advance Return to Table of Contents Return to Algorithm www. to be completed by health care providers. It is becoming more widespread in its acceptance in many parts of the country. Like POLST. See Resources Available for additional information regarding advance directives.org 37 Institute for Clinical Systems Improvement . portable. available across all sites of care.

icsi. 2005 [R]) Six Steps for Writing DNR Orders 1. he/she retains control of his/her medical destiny. The DNR order can be revoked if the benefit/burden assessment changes. • Many people believe that only old people need advance directives." • Patients often fear that once a person names a proxy in an advance directive he/she loses control of his/her own care. 2. "What would you want if you were in a similar situation?" (Warm.org 38 Institute for Clinical Systems Improvement . "Do you know what an advance directive is? Do you have one?" If you are afraid the patient may respond negatively. 4. Many others have shown a positive response from patients when advance directive discussions are held during outpatient visits. Overcoming this barrier: When discussing power of attorney with your patient. This is not true. "I ask all of my patients this question. (Fletcher. perhaps saying to you." The Patient Self-Determination Act of 1991 mandates that every person be asked about advance directives when first seen (inpatient and outpatient). If the assessment is negative. Most often these are separate legal roles." They mean "Treat me the way I want to be treated. the HCP approaches the patient (if capable) or the designated decision-maker(s) (if the patient is incapacitated) and explains a DNR order and why the health care team recommends writing such an order. Use the example of the Terry Schiavo case as a trigger to enlighten the discussion. Overcoming this barrier: The stakes may actually be higher for younger people if tragedy strikes. Advance directives only become active when a person cannot speak for himself or herself. If there is no remaining substantive objection. Ask.Algorithm Annotations Third Edition/November 2009 Palliative Care care planning with them before they become ill. the HCP consults with other members of the health care team about the issue and discusses the need for a DNR order. Overcoming this barrier: When explaining advance directives to your patients. • Many people believe that if a loved one has financial power of attorney. sick or well." Unfortunately. Have literature in your office to clear up discrepancies. assess his/her understanding. documenting the discussion and the reasons for the DNR order in the progress notes of the chart. make sure he/ she understand that as long as he/she retains decision-making capacity. he/she doesn't need a separate medical power of attorney. the HCP writes the order in the patient's chart. 5. Overcoming this barrier: When beginning a discussion of advance care planning. The DNR order is reviewed regularly. "Is there something wrong with me? Am I sicker than you are letting on?" respond by saying. Overcoming this barrier: Make sure your patient and staff understand that advance directives don't mean "Don't treat me. 3. The HCP makes a benefit/burden assessment of CPR in the context of the patient's overall prognosis. 1997 [R]) Return to Algorithm Return to Table of Contents www. If no substantive objection is made. simply ask. 6. advance directives can be a trigger for disengagement by the medical staff. • Many HCPs and patients feel that having an advance directive means "Don't treat.

miscommunication and poor care management (National Quality Forum. assisted living. 2000 [R]). 2003 [M]). Initiating discussion with the patient and family is the first step in establishing the individual plan of care for the dying patient (Ellershaw. Despite barriers. identification of end-of-life goals. The comprehensive treatment plan must be medically sound and concordant with the patient's wishes and values (Brody. and communicating this to the patient and family improve satisfaction and foster trust (Balaban. 2003 [M]). The patient's transition to the dying phase should be consistently communicated by all members of the health care team.org Institute for Clinical Systems Improvement 39 . A comfort care order set may be beneficial for practitioners to use for imminently dying patients. Patient and family wishes regarding the site of death should be discussed. There are key signs and symptoms that indicate that death will occur in hours to days. Ongoing revision of the plan of care must be individually directed to the patient and family. 2006 [R]. home care. Ongoing communication with the patient and/or family regarding the dying process and the treatment plan is necessary.) (Solloway. National Quality Forum. Mixed messages should be avoided as they can lead to loss of trust. about 75% of all deaths in the United States occur in hospitals or nursing homes (Brody. Referral to a hospice program may be appropriate. Ngo-Metzger. and care team regarding the dying phase and plan of care (National Consensus Project. Return to Algorithm Return to Table of Contents www. Attention to adequate symptom management allays fears and allows comfort during the dying process. Ongoing communication remains central. Patients and family members need clear information about the physical and psychological aspects of the dying process. This education should include the signs and symptoms of imminent death. Studies show that from 70% to 90% of people indicate that they prefer to die at home. 2006 [R]). etc. it is important to have this treatment plan available at the point of care. despite this. psychological. 1997 [R]). 2005 [R]). 1997 [R]). family and the health care team. This allows for clarification of prognosis. Care of the imminently dying patient requires an intensive plan of care. See ICSI Palliative Care Order Set. Care of the imminently dying patient is an intense interval for the patient. regardless of the site of care (inpatient. The National Consensus Project Clinical Practice Guidelines and the National Comprehensive Cancer Network Advance Care and Palliative Care Treatment Guidelines for Patients both endorse open communication with the patient.icsi. Diagnosing dying is complex and at times uncertain. Recognizing the dying patient requires a set of clinical skills. Attention to developmental. 2000 [R].Algorithm Annotations Third Edition/November 2009 Palliative Care 11. The treatment plan includes physical. ED. 2005 [D]). Essential to this plan is recognition of the dying patient. 2009 [R]. Agreement between care team members that the patient is dying. Establishing a treatment plan takes into account individual and family goals and preferences. 2008 [R]). family. National Comprehensive Cancer Network and American Cancer Society. The treatment plan should include education for the patient and family. There is less anxiety and depression if the dying process is clearly discussed. long-term care. and identification of care preferences (Balaban. cultural and religious needs is critical. Care of the Imminently Dying Patient Key Points: • • • • Recognition of the dying phase is essential. social and spiritual care (Ellershaw.

the physician should make a clear recommendation based on his or her expertise and experience (Curtis 2002 [D]. as he or she may need to digest the initial bad news first (Back. See Appendix B. Develop or Revise Palliative Care Plan Use a "shared decision-making" model if appropriate. Discharge from hospice occurs if prognosis improves or if the patient wishes to seek curative treatment. "Medicare Hospice Benefit: Eligibility and Treatment Plan." Return to Algorithm Return to Table of Contents www. This underscores the need to individualize care option discussions to patient preferences and illness status (Lee. social and spiritual support. "Comparison Between Palliative Care and Hospice.Algorithm Annotations Third Edition/November 2009 Palliative Care 12. A patient may be readmitted at any time.org 40 Institute for Clinical Systems Improvement . older patients may prefer less information and want to rely more on the physician's expertise alone. as long as the criteria for hospice are met. 2005 [R]). although coverage may vary. especially given that treatment strategies at one stage of the illness may be inappropriate for another stage (Dalal. level of interest in medical information tends to be stronger with younger age and increased educational attainment. See Appendix B. offers palliative medical care from a multidisciplinary team and serves patients and families as a unit with emotional. Return to Algorithm Return to Table of Contents 13. Most private insurances now have hospice benefits." for a table outlying symptoms and conditions relative to palliative and hospice care settings. See Appendix C. Does Patient Meet Hospice Criteria? Key Points: • • • • Hospice care. It is important that the patient does not feel rushed into deciding between treatment options.icsi. where the physician shares information and knowledge about the treatment options and the patient uses his or her values to weigh the risks and benefits of the different care options. "Comparison Between Palliative Care and Hospice." Return to Algorithm Return to Table of Contents 15. More acutely ill patients may have limited ability to successfully weigh risks and benefits of the different options and thus may rely more on family members or on the physician's recommendation. it is beyond the scope of this guideline to include all aspects of care once the patient is admitted to hospice. Discussions on treatment preferences should be periodically revisited to account for changes in patient preferences and course of illness. 2006 [R]). "Medicare Hospice Benefit: Eligibility and Treatment Plan. Note that this does not preclude the physician making a strong treatment recommendation based on clinical knowledge and experience. Hospice Care Team Coordinates Care with Primary Provider Although the palliative care model encompasses hospice care (see diagram in Introduction of guideline). now available in most communities in the United States." for a table outlying symptoms and conditions relative to palliative and hospice care settings. However. 2002 [R]). Although patients and family members desire a say in treatment options. This model promotes collaboration between the physician and patient in making treatment decisions. 2002 [R]). See Appendix C. Medicare patients certified by their physician as terminally ill with a life expectancy of six months or less if the disease runs its expected course may elect to receive hospice care. Lee.

According to the primary and specialty physicians participating in the ICSI Palliative Care Team focus groups.Algorithm Annotations Third Edition/November 2009 Palliative Care 16. a new evaluation of the patient's palliative care needs should be done. local hospice care team members may provide palliative care. To this end. improved utilization of limited resources including decreased ICU/ER use. The services of a community-based palliative care and/or hospice service may be particularly valuable for assistance in assessment of needs.icsi. This support may well include grief counseling and bereavement for family and loved ones after the death of a patient. 2004 [C]. Each community determines how responsibility for care is established and communicated. Return to Algorithm Return to Table of Contents 20. In other communities. and improved satisfaction of patients. It is important to educate staff in all settings (i. What research does exist includes improved symptom control and quality of life (Finley. Jack. consistent assessment and communication of palliative care needs. needs and values and goals of care (Morrison. The evidence-based support for the value of palliative care referral has been only marginally positive. a community-based palliative care group may be useful in delivering efficient. ED. advance care planning. Community-based palliative care services promotes consistent communication and delivery of care. Franke. Davis. 2002 [M]." Referral to specialists for consultation may be quite helpful but may result in recommendations for diagnostic/therapeutic interventions that the patient finds more burdensome than beneficial if there is not an understanding of the patient's overall condition. 2001 [D]. Return to Algorithm Return to Table of Contents www. Meier. this collaborative assistance with the patient's primary provider directing care is of particular value. Referral to specialist(s) should include an outline of patient's condition. evaluation of hospice appropriateness. therefore. values and goals. Teno. 2000 [M]. outpatient clinic and inpatient) regarding appropriateness of palliative care referrals. Often the busy practitioner wants to "be there" for the patient but cannot "do it all. Remission or Resolution of Disease? • While palliative care is delivered across care settings and throughout the full course of illness. it may be appropriate to refer to a palliative care service.e.org 41 Institute for Clinical Systems Improvement . 2002 [B]). Cowan. but models generally employ collaboration of the primary clinician directing the care plan with palliative care support. When available in the community. needs. This avoids counterproductive recommendations. 2000 [C]. 2005 [R]). Elsayem. 2004 [R]). Make Palliative and/or Specialty Care Referrals and/or Consults as Needed Key Points: • • • Advanced care needs assessment and care planning place great demands on the primary provider. decreased LOS. 2003 [C]). and multidisciplinary collaborative development of a palliative care plan. families and health care providers (Meier. increased acute care capacity (Bruera. in great measure due to ethical and logistical problems with recruitment of research subjects. a patient may no longer require focused palliative care when: • • There is a remission of symptoms and the illness is no longer progressing The disease process is resolved (cured) Death occurs If symptoms recur or the patient's condition deteriorates. 2004 [D]. 2005 [R].. they would reenter the care process at box #4 of the algorithm. Smaller communities may find combining hospice and palliative care to be the most efficient use of limited resources.

Provider contact after the death of a patient can be comforting for the patient's loved ones (Griffin. However. such as that experienced by the patient or a loved one prior to the expected death of the patient (Hallenbeck. Failure to do so may lead to complicated grieving (Lebrocq. Grief can be anticipatory. By avoiding mixed messages.Algorithm Annotations Third Edition/November 2009 Palliative Care 22. within the policy guidelines of the facility. Several models defining grief are available. 2005 [R]). By assessing the grief response prior to death. 2003 [D]). or elements of stages may appear concurrently. bereavement interventions can begin prior to and in anticipation of the actual loss (Chochinov. 1995 [D]). it is possible to identify risk of complicated grieving and to provide early intervention (Ellifritt. such as the death of a loved one. that includes both physiologic and psychological reactions (McQuay. the person may fail to progress through grief or may be "stuck" in one stage of the grief process. Many community services are available to the bereaved. Honesty at the end of life is essential (see Annotation #3. Health care providers play an important role in facilitating healthy grief and bereavement processes. Grief is not on a linear continuum and does not follow a specific time frame. yet it is important to note that progress through grief is not predictable. Grief can also be complicated. expected emotional suffering caused by a significant loss. At this time it may be possible to identify bereavement needs of patients and their loved ones. patients may review their lives and assist loved ones in future plans. 2007 [M]). Movement through grief varies from person to person. 1989 [R]). 2003 [M]). Various factors may predispose an individual to complicated grieving. Following the death of the patient. 2003 [D]). it is essential to allow the patient's loved ones to perform any customs or rituals that are important to them. "Initiate Palliative Care Discussion"). and the bereaved may vacillate between stages. filling out necessary forms or writing letters for the family as needed. Grief following a death is called bereavement.icsi. Death and Bereavement Key Points: • • • Health care providers play an important role in facilitating healthy grief and bereavement processes. In complicated grieving. Providers should also offer practical support by completing death certificates in a timely manner. especially depression Sudden and unexpected death Death of a young person Stigmatized deaths such as suicide or AIDS Culpable deaths Inability to carry out valued religious rituals Return to Table of Contents Return to Algorithm www. Providers should be available to answer questions and offer support. This may be done informally or through a formal debriefing. leading to maladaptive behaviors associated with a distorted or prolonged grief period (Ellifrit. Several factors may predispose an individual to complicated grief. These include: • • • • • • • • Dependent or ambivalent relationship Multiple previous bereavements Previous psychiatric history. Providers may wish to offer emotional support by sending a card expressing their condolences. Grief is the normal.org 42 Institute for Clinical Systems Improvement .

it is suggested that the length of followup with the bereaved is a minimum of thirteen months (Buchanan.org Institute for Clinical Systems Improvement 43 . it is imperative that each provider be aware of the needs of the bereaved. 1996 [D]. potential risk factors for complicated grieving and the services available within their area so that appropriate referrals can be made to promote healthy grieving. 1998 [NA]) Others who are vulnerable to complicated grief include children. such as the funeral. elderly male widower (Chochinov. yet two-thirds of patients die out of hospice services (Centers for Medicare & Medicaid Services 418. Nesbit. support groups. confused elders and those with learning disabilities. repeated explanations and participation in important events. In order to provide support through the first anniversary of the death. 1989 [D]. Many resources are available for children. counseling services. or over 65 whose partner had illness of five years or more Multiple life crises Gender of bereaved person – e. grief groups. Possible community services include pastoral care. Moseley. including storybooks. may decrease the repetitious questions about the deceased (Sheldon. Sheldon. National Quality Forum. Bereavement counseling is required by Medicare for hospice programs.88 [NA].icsi. For confused elders or survivors with learning disabilities.g.. Although it is not realistic for health care providers to personally provide bereavement services for the grieving loved ones of a patient. National Quality Forum. 2006 [R]. Return to Algorithm Return to Table of Contents www. 1998 [NA]). 1989 [R].Algorithm Annotations • • • • Lack of social support Third Edition/November 2009 Palliative Care Survivor under age 45 whose partner died suddenly. bereavement follow-up programs and communities of faith. 2006 [R]). A referral to social services or contacting a local hospice program may be appropriate for assistance in bereavement interventions. 1997 [D]). workbooks and a regional camp for grieving children.

they can enhance the quality of the physician-patient relationship. Elements of palliative care and curative treatment can be combined. so that patients can make informed decisions about continuing treatments. Evidence shows that oncology patients served by a palliative care team have a higher likelihood of completing chemotherapy.Third Edition/November 2009 Palliative Care Appendix A – Myths About Palliative Care MYTH: Palliative care teams take the patient away from the physician in charge. This document states. MYTH: Palliative care is only for actively/imminently dying patients. Even when the underlying condition cannot be cured. Return to Table of Contents www. "Physicians should not fear disciplinary action from the Board for ordering. FACT: Palliative care teams work with patients and families to clarify goals of treatment. FACT: Palliative care teams work with the attending physician to provide management of a patient's difficult physical and psychosocial symptoms. including opioid analgesics. Palliative care is a very active approach to symptom management and family support. communication about their plan of care and coordinated care over the course of their illness. MYTH: When patients are referred to palliative care. prescribing. Specialized hospice care is implemented at the end of life and when curative treatment is no longer wanted or has become futile. They can help coordinate challenging and time-consuming tasks such as arranging family conferences. for a legitimate medical purpose in the course of professional practice. Patients want the treatment that palliative care provides: pain and symptom relief." FACT: Palliative care is never futile. sophisticated medical technology can be used to control symptoms and improve a patient's quality of life. objectives of treatment.org Institute for Clinical Systems Improvement 44 . and consent serve to provide justification for appropriate use of analgesics." Documentation of patient evaluation. initially adopted by the Federation of State Medical Boards of the United States in 2004. MYTH: Physicians can suffer regulatory and legal consequences from prescribing opioids and sedation in the doses sometimes needed for palliative and end-of-life care. along the continuum of health care. dispensing or administering controlled substances. he/she thinks his/her doctor is giving up on them. FACT: Palliative care can be offered simultaneously with curative treatment. The Minnesota Board of Medical Practice has adopted the Model Policy for the Use of Controlled Substances for the Treatment of Pain. By improving patient and family satisfaction. FACT: Patients referred to palliative care teams actually have more satisfaction with their overall care. FACT: Palliative care is the aggressive management of symptoms in patients with complex or serious medical illness. MYTH: Palliative care starts when curative treatment stops. periodic review.icsi. MYTH: Palliative care is doing nothing – "nothing more can be done. Undertreatment of pain is considered to be as equally inappropriate as overtreatment. FACT: Regulatory bodies at all levels recognize the importance of good pain control. MYTH: Palliative care teams try to convince the patients to stop treatment. as well as with their primary physician. at any stage of the illness. and successful actions have been brought against physicians for failing to provide adequate relief of pain.

discussion of risks and benefits with the patient and/or surrogate decision-makers.icsi.Appendix A – Myths About Palliative Care MYTH: Palliative sedation is considered euthanasia. (Meisel. Euthanasia is the act of delivering medical treatments with the intent of causing death. MYTH: Once artificially administered nutrition and hydration therapy is initiated. FACT: There is no legal or ethical distinction between withholding a treatment and withdrawing it. Third Edition/November 2009 Palliative Care FACT: Palliative sedation is administered with the intent of relieving suffering from refractory physical symptoms.org Institute for Clinical Systems Improvement 45 . is required to withdraw treatment. or permission from a court of law. Its use as a medical therapy has been noted by the United States Supreme Court. MYTH: A formal legal opinion. the goal of relieving suffering. In most states. FACT: When medical providers and patients and/or families are in agreement about the goals of care and plan for withdrawal of treatment. 2000 [R]) Return to Table of Contents www. there is no legal risk and no need for involvement of the courts. and careful dosing and monitoring of pharmacologic agents are important points to document. Careful documentation of prior unsuccessful treatments. it is illegal and/or immoral to discontinue it. artificial nutrition and hydration are considered medical therapy and no distinction is made between withdrawal of artificial nutrition and hydration and any other medical therapy that is either not providing the desired effect or is increasing the distress of the patient. The intent is neither to hasten nor prolong death.

Third Edition/November 2009 Palliative Care Appendix B – Comparison Between Palliative Care and Hospice Palliative Care Debility/Failure to Thrive • Greater than three chronic conditions in patient over 75 years old • Functional decline • Weight loss • Patient/family desire for low-yield therapy • Increasing frequency of outpatient visits.icsi.va. The Palliative Response. Return to Table of Contents Institute for Clinical Systems Improvement www. www. pulmonary hypertension • Behavioral problems • Feeding problems – weight loss • Caregiver stress • Frequency of ED visits • Increased safety concerns • Increased need for paracentesis for removal of ascitic fluid • Increased confusion (hepatic encephalopathy) • Increased safety concerns • Symptomatic disease • Dialysis • Stage IV or Stage V chronic kidney disease • • • • Stroke Parkinson’s ALS – amyotrophic lateral sclerosis MS – multiple sclerosis Hospice* • Documentation of clinical progression of disease • ECOG three or more • No desire for aggressive treatment • Not a candidate for aggressive treatment • Frequent emergency room visits/frequent hospitalizations • Any patient with metastatic or inoperable cancer Cancer Heart Disease • • • • • Heart failure symptoms at rest Ejection fraction less than 20% New dysrhythmia Cardiac arrest or syncope Frequent emergency room visits for symptoms Pulmonary Disease • Dyspnea at rest • Signs or symptoms of right heart failure • O2 sat or O2 of less than 88% • PCO2 greater than 50 • Unintentional weight loss Dementia Liver Disease Renal Disease Neurologic • Unable to walk.hospice. hospitalizations • Uncontrolled signs and symptoms due to cancer or treatment • Introduced at time of diagnosis – if disease terminal • Introduced when disease progresses despite therapy • Stage III or IV heart failure despite optimal medical management • Angina refractory to medical or interventional management • Frequent emergency department visits or hospital admissions • Frequent discharges from implanted defibrillators despite optimal device and antiarrhythmic management • Oxygen-dependent.0 • Frequent emergency room visits • Albumin less than 2.g. pulmonary fibrosis.5 • Unintentional weight loss • Decubitus ulcers • Homebound/bed confined * Compiled from: National Hospice and Palliative Care Organization.. bathe or dress self without assistance • Incontinence • Less than six intelligible words • Frequent ER visits • INR greater than 5 • Albumin less than 2. e. www.org.5 • Refractory ascities • SBP • Jaundice • Malnutrition and muscle wasting • Not a candidate for dialysis • Creatinine clearance of less than 15 mL/minute • Serum creatinine greater than 6. Bailey. Amos.gov.nhpco.org 46 . emergency department visits. O2 sats less than 88% on room air • Unintentional weight loss • Dyspnea with minimal to moderate exertion • Other pulmonary diagnoses.

treatments and services.S. Long-term care facility. initially certified for two 90-day periods. Under Medicare. Medicare rules do not require a primary caregiver in the home. • • Hospice services include medical equipment and supplies. • • • Plan of Care (POC) The hospice team and the patient's physician work together with the patient and family to maximize quality of life by jointly developing the Plan of Care. only those treatments that are necessary for palliation and/or management of the terminal illness will be approved. grief counseling and bereavement support. Hospice services are not site specific. chemotherapy and radiation (if for palliation). Hospice team members visit the patient and family on an intermittent basis.org Institute for Clinical Systems Improvement 47 . the Medicare Hospice Benefit (MHB) pays for the vast majority of all hospice care. symptoms and goals of care. the patient may select a hospice physician for this role or may select his/her usual primary doctor. counseling and bereavement services for terminally ill patients and their families. Medicare and hospice benefits can be coordinated to cover the appropriate aspects of care. friends. The primary physician is responsible for working with the hospice team to determine appropriate care. 25% of patients in the U. medication for pain and symptom control. DNR status cannot be used as a requirement for admission. the MHB pays for medical.Third Edition/November 2009 Palliative Care Appendix C – Medicare Hospice Benefit: Eligibility and Treatment Plan In the United States. They do not cover curative treatments or extensive evaluations inconsistent with the hospice approach. The original goal of the MHB was to support families caring for their dying relative at home. the patient indicates the primary physician who will direct care. but as death nears. The majority (95%) of hospice care takes place in the home. In general. may be recertified for an unlimited number of 60-day periods if the condition is still terminal with a life expectancy of less than six months if the disease runs its expected course. Patients.icsi. hired caregivers) who can be present 24 hours a day in the home. it becomes increasingly difficult to provide care for a patient who does not have someone (family. Places of Care Home. Hospice benefits cover hospital services for short-term symptom control and temporary respite care to relieve family caregivers. Individual hospice programs must establish a contract with the facility to provide hospice care. Return to Table of Contents www. they can be provided in an acute care hospital. The hospice program and the patient's physician must together approve any proposed tests. Referral for hospice care is appropriate when the overall plan of care is directed toward comfort rather than reversing the underlying disease process. at home or in a long-term care facility. die in nursing homes. The POC is based on the patient's diagnosis. Physician Role At the time of enrollment. determined by the Plan of Care. nursing. The MHB does not pay for nursing home room and board charges. Medicare recognizes that this can be the resident's home and that the patient's family frequently includes the nursing home staff. Established in 1983. Hospice care under the MHB can be provided to residents in addition to usual care provided by the facility. If a patient qualifies for MHB.

Dedicated units. or an unrelated problem forces the patient to disenroll in hospice. Hospice Minnesota 800-214-9597). either freestanding or within other facilities. the patient wishes to seek curative treatment.gov/center/hospice.cms. General inpatient facility. The inpatient facility must have a contract with the hospice program for acute care.icsi. or your state hospice organization (in Minnesota. are available in some areas. the patient may be admitted to a hospital or inpatient facility for more intensive management. see http://www. The hospice team works with the primary physician and patient and family to determine appropriate care. your state or local health department. (See Annotation #13.Appendix C – Medicare Hospice Benefit: Eligibility and Treatment Plan Third Edition/November 2009 Palliative Care Hospice inpatient unit. The patient usually selects the primary specialty care physician who is currently directing his/her care but may elect to have the hospice medical director as the primary physician in certain cases. (Turner. "Does Patient Meet Hospice Criteria?" Discharge from hospice may occur for several reasons. Permitted length of stay varies with the facility and its specific admission policies. the patient indicates the primary physician who will direct care. contact the nearest Social Security Administration office. as long as the criteria for admission are still met. Emergency Department/Urgent Care Patients may seek medical care at EDs or urgent care centers when unable to manage their care independently at home. "Does Patient Meet Hospice Criteria?") To determine whether a Medicare-approved hospice program is available in your area. still under the MHB. such as nursing homes or hospitals. or call the National Hospice Organization Hospice Help Line (800) 658-8898. These may include: • • • an improved prognosis. When pain or other symptoms related to the terminal illness cannot be managed at home. Return to Table of Contents www. Patient may be readmitted to hospice at any time.asp.hhs. It is essential that any testing or treatment be coordinated with the hospice team. 2006 [R]) For specific Medicare Hospice Benefit information.org Institute for Clinical Systems Improvement 48 . (See Annotation #13. Hospice Care Team Coordinates Care with Primary Provider At the time of enrollment.

MD Family Medicine Dakota Clinic Linda Setterlund.org Copyright © 2009 by Institute for Clinical Systems Improvement 49  Third Edition Begins Dec 2009 Released in November 2009 for Third Edition. PT Measurement/Implementation Advisor ICSI Mabel Rohr. Chaplain Religious Counselor Mayo Clinic Nancy Joyner. Original Work Group Members Martha McCusker. The next scheduled revision will occur within 12 months. Paul Heart Clinic Peter Nelson. Work Group Leader HealthPartners-Regions Hospital Mohamoud Hamud. MD Internal Medicine/Geriatrics Hennepin County Medical Center Glenda Morris. Suite 1200. CNP Family Medicine/Geriatrics HealthPartners Medical Group Kristina Schlecht. MD Palliative Care Content Consultant Evercare Hospice and Pallitaive Care Dianne Brundage. (952) 814-7060. Pharm D Pharmacist Park Nicollet-Methodist Howard Epstein.ICSI. (952) 858-9675 (fax) Online at http://www. LICSW Social Worker Winona Health Cally Vinz. CNP Cardiology St. Bloomington. MD Family Medicine/Geriatrics University of MN Physicians Contact ICSI at: 8009 34th Avenue South. MN 55425. RN Facilitator ICSI Return to Table of Contents . ACHPN Family Medicine/Palliative Care Altru Health System Ken Kephart. CNP Family Medicine/Geriatrics Park Nicollet-Methodist Janet Jorgenson-Rathke. MD Anesthesiologist/Palliative Care Winona Health Becky Nosan. MD Family Medicine/Palliative Care Hutchinson Medical Center Sheila Skeels. MD Internal Medicine/Palliative Care. MA Facilitator ICSI Sara Shorter.ICS I I NSTITUTE FOR C LINICAL S Y S T E M S I M P ROV E M E N T Supporting Evidence: Palliative Care Document Drafted March – July 2006 Critical Review Aug – Sept 2006 First Edition Feb 2007 Second Edition Jun 2008 Mark Leenay.

A full explanation of these designators is found in the Foreword of the guideline. Return to Table of Contents www. B. C. D. M. X.Third Edition/November 2009 Palliative Care Brief Description of Evidence Grading Individual research reports are assigned a letter indicating the class of report based on design type: A.icsi.org Institute for Clinical Systems Improvement 50 . R.

and fewer days of severe pain (5. and that improved care of distressing symptoms and education of proxies may lead to clinical management more in keeping with stated goals of care.org/national/documents/endoflifelitreview. fluorouracil 1.6%).361:1529-38. Cancer 2002. and reported lack of discussion with the individual's physician regarding end-of-life issues.icsi. to obtain information on prognosis and clinical complications for patients with advanced dementia.58) than the control arm. N Engl J Med 2009. 7. It cites evidence describing poor outcomes from aggressive medical treatment. Volicer L. Rescue analgesic medications were made available. viscous lidocaine and diphenhydramine administered at the same frequency in 26 patients with head and neck cancer undergoing cisplatin 100 mg/m2. uses data obtained from the Choices. and feeding disability (38. the study was not powered to answer this question. et al.S. even though 96% of proxies described comfort as the primary goal of care. Attitudes.85 days vs. Clinicians may want to consider using a lower initial dose of morphine sulfate liquid.org Institute for Clinical Systems Improvement 51 . life-limiting illness.07 vs 8. (Class B) This study.7%). All patients were instructed to swish the solution for 2 minutes and then spit. Most of the studies included for review used experimental or quasi-experimental methods. commissioned by the Alzheimer's Association. End-of-life care for people with dementia in residential care settings.5%). funded by the National Institute on Aging. with life expectancies similar to those resulting from metastatic breast cancer and stage 4 CHF. The authors conclude that the clinical course of dementia is consistent with that of a chronic. and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE) project. a febrile illness other than pneumonia (44. The clinical course of advanced dementia. morphine sulfate is available in the U. et al. (Class R) This report. Six-month mortality was particularly significant for those individuals who had pneumonia (46. is a review of the literature from 1994 to 2004. Most acute status changes in residents did not occur within the last three months of life. and describing barriers to implementing high-quality end-of-life care in these settings. http://www.67 days). Bonomi MR.95:2230-36. While this morphine salt is not available as a commercial product in the United States. The proxy decision-makers underestimated life expectancies. However. Over 50% of the subjects died within the 18-month study period. (Class B) This supportive care paper from Argentina. Navigante AH. supporting palliative care as an appropriate alternative to care. a prospective observational study. compared the use of morphine clorhydrate 2 mg/ml solution 15 ml every three hours six times a day versus a control solution of magnesium aluminum hydroxide. Cancer and Oncology Cerchiette LCA.alz. Return to Table of Contents www.000 mg/m2/day for five days as a continuous infusion and radiation therapy. Patients in the morphine solution arm had a shorter duration of severe functional impairment (1. Teno JM. The Web site is an excellent resource for palliative care and dementia. Kiely DK. Effect of topical morphine for mucositis-associated pain following concomitant chemoradiotherapy for head and neck carcinoma.Third Edition/November 2009 Palliative Care Annotated Bibliography Dementia Mitchell SL. and then adjusting the doses as tolerated. with no swallowing of the study solutions. 2005. no statistical difference between the groups was found. Alzheimer's Association. and has a buccal absorption of 24% to 37% depending on the pH of the mouth.pdf. The authors noted that 40% of residents had at least one intervention defined as burdensome within the last three months of life.

An emphasis on use of proven beta-blockers would be indicated (carvedilol. Over the past 30 years. less hospitalizations and a 43% in mortality. Box 1 "Universal Strategies for Clear Health Communication" is very useful when talking with patients and their families.5:386-96. much remains unknown. the CARE CHF trial showed a 36% reduction in mortality.icsi. The primary endpoint was a complex symptom scoring system. (Class R) Pediatric palliative care provides physical and psychosocial care to children with life-limiting illnesses and their families. Pérez-Stable EJ. Box 2 from this article. volunteers and other providers in a myriad of settings. J Am Coll Cardiol 2009. particularly about pediatric palliative care. and it provides a general overview of what is known and unknown about the provision and need for pediatric palliative care. a portfolio of research has amassed on palliative care. nurses.org Institute for Clinical Systems Improvement 52 . Yet. With regards to biventricular pacing.. (Class R) This state-of-the-art paper on palliative care in heart failure is an excellent summary of the systemic considerations in this population. Research in pediatric palliative care: closing the gap between what is and is not known. Amer J Hospice and Palliative Care 2009. This study documented significant improvement in quality-of-life assessment and in NYHA class. metoprolol succinate and bisoprolol). African Americans with heart failure on standard therapy exhibited nitric oxide deficiency that was successfully corrected with isosorbide ditrate in combination with hydralazine. JAMA 2009. Cultural Palliative Care Smith AK. Services are provided by physicians. resulting in marked symptom reduction.26:392-98. she wept. Currently there are data in support of an ARB other than valsartan for LV systolic dysfunction (i. Palliative care in congestive heart failure. spironolactone was associated with a 30% reduction in mortality (not mentioned in the paper). This article is the first in a series. Palliative care for Latino patients and their families: whenever we prayed. (Class R) A very helpful article both as it relates to the specific cultural issues of Latinos at end-of-life and general issues such as working with interpreters and asking questions to improve cultural understanding. In the RALES trial.e.Annoted Bibliography Third Edition/November 2009 Palliative Care Cardiology Goodlin SJ. The purpose of this series is to inform and promote discussion about research in pediatric palliative care. Sudore RL. "Questions to Improve Cultural Understanding of Illness" provides examples of scripting.301:1047-57. Pediatric Palliative Care Knapp CA. Subsequent articles will focus on specific topics such as decision-making and support care. Candesartan). In the A-HEFT study. 46% decrease in the combined endpoint of mortality plus hospitalizations. Return to Table of Contents www.

Available at: http://www. Snyder CK. (Class R) Bruera E. Available at: http://www. Appropriate use of artificial nutrition and hydration – fundamental principles and recommendations.gov/manuals/downloads/ som107ap_m_hospice.cms. Available at: http://www. 2006. Buckman R. N Engl J Med 1997. Hight E. Kidney International 2006.htm. Accessed July 2006. et al.mcw. Arnold RM. (Class Not Assignable) Centers for Medicare and Medicaid Services. (Class R) Block SD.63:81-89. (Class D) Block SD. et al. (Class R) Bossola M. Cancer 2000.org 53 . (Class R) Bailey A. (Class R) Caraceni A.hhs.Third Edition/November 2009 Palliative Care References Links are provided for those new references added to this edition (author name is highlighted in blue). (Class R) Balboni TA.89:1145-49. Breaking bad news: why is it still so difficult? Brit Med J 1984. N Engl J Med 2005.9:751-72. Approaching difficult communication tasks in oncology.70:417-22. 2006. Faber-Langendoen K. Withdrawing intensive life-sustaining treatment – recommendations for compassionate clinical management. et al. (Class D) Buckman R. The Oncologist 2000.hospice. (Class X) Campbell ML.25:555-60. J Gen Intern Med 2000. (Class Not Assignable) Center to Advance Palliative Care (CAPC). Psychological issues in end-of-life care. Crit Care Nurs Q 1996. Am Fam Physicians 2001.353:2607-12.5:302-11. Luciani G. Caplan A. Palliative care consultation in the intensive care unit.capc. (Class R) Balaban RB. Available at: http://www. Palliative response. Guingi S.336:652-57. Fast fact and concept #055: decision making capacity. Block SD.288:1597-99. Vanderwerker LC.va. A physician's guide to talking about end-of-life care.15:195-200. Impact of delirium on the short term prognosis of advanced cancer patients.19:35-45. Kapo J. (Class R) Arnold R. (Class C) Buchanan HLK. Anandarajah G. SPIKES – a six-step protocol for delivering bad news: application to the patient with cancer. et al.pdf. Geubtner MD. Baile WF. Lenzi R. (Class R) Baile WF. The impact of a regional palliative care program on the cost of palliative care delivery. J Palliat Med 2006. (Class R) Brody H. (Class D) Casarett D. 2006. et al. (Class R) Back AL.55:164-77. J Clin Oncol 2007. Crit Care Med 2006. Ann Intern Med 2000. Trauma bereavement program: review of development and implementation.34:S355S358.icsi. Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. Spirituality and medical practice: using the HOPE questions as a practical tool for spiritual assessment. Maltoni M. edu/FFforPDA/273. Anorexia in hemodialysis patients: an update. (Class Not Assignable) Return to Table of Contents Institute for Clinical Systems Improvement www. Tazza L.htm.132:209-18.gov/Amosbileybook/index. Assessing and managing depression in the terminally ill patient. Gagnon B. Campbell ML. J Palliat Med 2000. Accessed on July 24.org/palliative-care-acrossthe-continuum/pediatric-palliativecare. Nanni O. CA Cancer J Clin 2005.3:181-86. Accessed July 24. Ogle KS. Neumann CM.eperc.

Fast fact and concept #178: the national POLST paradigm initiative. Dalal S. 2006. Ward C. Shannon SE. Dalal S. Studying communication about end-of-life care during the ICU family conference: development of a framework. Symptom control in palliative care – Part II: cachexia/anorexia and fatigue.21:177-91. Cancer 2000. Crit Care Med 2001. mcw.95:223036. Fast fact and concept #136: medical futility. et al. dignity. The economic and clinical impact of an inpatient palliative care consultation service: a multifaceted approach. J Palliat Med 2006.org 54 .htm.18:26-29.htm.shtml.124:813-22. (Class R) Christakis NA.edu/FFforPDA/555_ff136. J of Palliative Med 2007.9:391-408.9:409-21. (Class R) Curtis JR.eperc. Available at: http://chronicle. Accessed April 23.9:422-36. (Class R) Curtis JR.17:147-60. et al. Effect of topical morphine for mucositis-associated pain following concomitant chemoradiotherapy for head and neck carcinoma. (Class R) Del Fabbro E. et al. et al. Cancer Investigation 1989. Patrick DL. Edwards A.References Third Edition/November 2009 Palliative Care Cerchiette LCA. (Class R) Ciemins EL. Validation of the Edmonton symptom assessment scale. Walsh D.eperc. Sinclair CT. (Class C) Cowan JD. (Class M) Return to Table of Contents Institute for Clinical Systems Improvement www. Hospital charges for a community inpatient palliative care program. Cancer 2002. The family conference as a focus to improve communication about end-of-life care in the intensive care unit: opportunities for improvement. Study shows most terminally ill patients receive inaccurate survival estimates. Engelberg RA. 2001. Botkin JR. Blum L. Lamont EB. J of Crit Care 2002. Bruera E. (Class R) Diekema DS. CA Cancer J Clin 2006. J Palliat Med 2006b.21:177-90. Tolle S. (Class B) Chang VT. Bereavement: a review for oncology health professionals. Dying.7:593-600.fastFact/ff_178. Ott BB. Johnson RW. Bruera E. (Class C) Cuezze JE. Nunley M. WJM 2000.29: N26-N33. Palliative Med 2007.edu/010712/inaccurate. Byrne A. Bonomi MR. The business of palliative medicine: management metrics for an acute-care inpatient unit.88:2164-71. Navigante AH.mcw. Moss AH. and new horizons in palliative end-of-life care. Care of the dying patient: the last hours or days of life.159:1803-06. (Class D) Del Fabbro E.326:30-34. Am J Hosp Palliat Care 2004.172:310-13. (Class D) Dalal S.icsi. Wenrich MD. Del Fabbro E. Pediatrics 2009. (Class R) Chochinov HM. (Class R) Davis MP.20. Symptom control in palliative care – Part III: dyspnea and delirium. (Class R) Dorman S. Available at: http://www. Available at: http://www. Extent and determinants of error in physicians' prognoses in terminally ill patients: prospective cohort study. (Class D) Ellershaw J. (Class R) Ehman JW. Hwang SS. Short TH. et al. (Class M) Dunn P. BMJ 2003. Do patients want physicians to inquire about their spiritual or religious beliefs if they become gravely ill? Arch Intern Med 1999. et al. Which measurement scales should we use to measure breathlessness in palliative care? A systematic review. Clinical report – forgoing medically provided nutrition and hydration in children. Nelson K.56:84-103.uchicago. (Class D) Chocinov HM. Feuerman M. Am J Hosp Palliat Care 2001. Symptom control in palliative care – part I: oncology as a paradigmatic example. Accessed on July 24. 2007. Bruera E.10:1347-55. J Palliat Med 2006a. (Class R) Easton J.

92:420-21. 2nd ed. hospice. Editorial: megestrol acetate use for weight gain should be carefully considered.htm. Ann Oncol 2002. Complicated bereavement: a national survey of potential risk factors. Williams A.htm. (Class R) Francke AL. (Class M) Hallenbeck J. Finlay I. Available at: http://www. Venohr I. Miller FG. (Class M) Fleming ND. (Class R) Return to Table of Contents www. CHEST 2007.icsi.23:96-106. Swint K. Family member satisfaction with end-of-life decision making in the ICU. (Class M) Initiative for Pediatric Palliative Care. (Class D) Fletcher JC. Do hospital-based palliative teams improve care for patients or families at the end of life? J Pain Symptom Manage 2002. In Introduction to Clinical Ethics. 2005. J Palliative Med 2008.edu/fastFact/ff_220. (Class D) Emanuel LL. Alvarez-Secord A. Blackhall LJ. Palliative care in congestive heart failure. Goodwin DM.org Institute for Clinical Systems Improvement 55 . Palliative care inpatient service in a comprehensive cancer center: clinical and financial outcomes. (Class A) Goodlin SJ. mcw. quality-of-life measurements. Palliative care in hospital. and bereavement for end-of-life care in patients with lung cancer: ACCP evidence-based clinical practice guidelines (2nd edition).5:386-96.org/mod5_act1. (Class D) Ellis PM.41:83-91. Colley ME.11:180-88.eperc. Available at: http://www. Evaluative research on palliative support teams: a literature review. Lombardo PA. Available at: http://www. Higginson IJ. (Class B) Griffin JP. et al. (Class R) Inouye SK. Indwelling catheters for the management of refractory malignant ascites: a systematic literature overview and retrospective chart review. The Robert Wood Johnson Foundation.22:2008-14.13:257-64." JAMA 2001.References Third Edition/November 2009 Palliative Care Ellifritt J.286:2993-3001. Bruera E. Walsh D. J Am Coll Cardiol 2009. Conner D. (Class C) Kagawa-Singer M. Palliative Med 2003. Hospital based palliative care teams improve the symptoms of cancer patients. Wall RJ. Nelson KA. The. J Clin Oncol 2004. Delirium in older persons. N Engl J Med 2006. How should doctors communicate the diagnosis of cancer to patients? Ann Med 1999. Am J Hosp Palliat Care 2003.20:114-20. (Class R) Jack B.31:336-41. Fisch MJ. (Class R) Finlay IG. et al. Improving communication and strengthening relationships. von Gunten CF.edu/fastFact/ff_32. Nelson JE. Hillier V. et al. (Class R) Gries CJ. Negotiating cross-cultural issues at the end of life: "you got to go where he lives. In The Education for Physicians on End-of-Life Care (EPEC) Curriculum. Marshall MF.132:404S-22S. Fast fact and concept #032: grief and bereavement (part 1). (Class R) Higginson IJ. et al.354:1157-65. Accessed July 13. at home: results from a systematic review.asp.ippcweb. Engelberg RA.17:498-502. (Class D) Kamal AH. Von Gruenigen V. Fast facts and concepts #220: hypodermoclysis. September 19.133:704-12.mcw. Palliative care consultation. J Clin Endocrinol Metab 2007. Patient Educ Couns 2000. Koch KA. Ferris FD. (Class R) Evans WJ.38:341-49. J Pain Symptom Manage 2009. Curtis JR. (Class R) Elsayem A. EPEC Project. Goodwin DM. et al. Impact of an inpatient palliative care team: a randomized controlled trial. 2006. Oldham J. CHEST 2008. eperc. Tattersall MH. 1999. (Class R) Gade G.

The SPIRITual history. Schaid DJ.org Institute for Clinical Systems Improvement 56 . realities. Palliative sedation therapy does not hasten death: results from a prospective multicenter study. Charles A.148:147-59. Quill T. (Class M) Maltoni M. Ann Intern Med 2008. (Class D) Meier D. Ann Intern Med 2001. Bushwick B. Improving end-of-life outcomes in nursing homes by targeting residents at high-risk of mortality for palliative care: program description and evaluation.464-83. (Class B) Moneymaker K.icsi. Christakis NA. (Class R) King DE. Prognostic disclosure to patients with cancer near the end of life. Schwartz R. et al. Giangrasso VM.19:2495-2501. Michalak JC.11:762-67.11:85-90. (Class R) Lamont EB.27:33-39. Goldblatt PC. Personhood. QTc interval screening in methadone treatment. Kramer A. Ann Intern Med 2009.5:11-16. Ann Oncol 2009. Arch Fam Med 1996. (Class R) McCurdy DB.8:157. (Class X) McDonagh JR. (Class B) LeBrocq P. Research in pediatric palliative care: closing the gap between what is and is not known. Stimmel B. J Palliative Med 2005. The family conference. (Class M) Krantz MJ. J Pall Med 2008. (Class D) Knapp CA. et al. chronic illness. Dy SM. et al.361:1529-38. J Pain Palliat Care Pharmacother 2004. JAMA 2000. Evidence for improving palliative care at the end of life: a systematic review.32:1484-88. Lynn J. J Healthc Qual 2005. Amer J Hospice and Palliative Care 2009. et al. Family satisfaction with family conferences about endof-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction. (Class R) Mitchell SL. N Engl J Med 2009.26:392-98. The clinical course of advanced dementia.39:349-52. Seven legal barriers to end-of-life care: myths. et al. Morris M.9:81-91. Back AL. Avenell A. spirituality.18:87-109.7:549-55. Pittureri C. Elliott TB. et al. Engelberg RA. Establishing a bereavement program: caring for bereaved families and staff in the emergency department. Beliefs and attitudes of hospital inpatients about faith healing and prayer. Enhancing physician-patient communication.134:1096-1105. Death-telling research project.References Third Edition/November 2009 Palliative Care Kass-Bartelmes BL. Scarpi E. (Class A) Lorenz KA. Snyder L. Phase III evaluation of four doses of megestrol acetate as therapy for patients with cancer anorexia and/or cachexia. (Class R) Meisel A.11:217-25. (Class B) Maugans TA. Buchanan M. Hughes R. Martin J. (Class R) Levy C. (Class R) Koretz RL. (Class D) Lee SJ. Chan T. J Clin Oncol 1993. Am J Gastroenterol 2007. Palliative care as a quality improvement strategy for advanced. Accid Emerg Nurs 2003. Block SD. Crit Care Nurs Clin North Am 1995. Does enteral nutrition affect clinical outcome? A systematic review of the randomized trials. Lipman TO. Hematology Am Soc Hematol Educ Program 2002. (Class Not Assignable) Return to Table of Contents www.102:412-29. Crit Care Med 2004. J Clin Ethics 1998.150:387-95. J Fam Pract 1994. and grains of truth. Teno JM. (Class D) McQuay JE. Advance care planning: preferences for care at the end of life. Kiely DK. and hope in the care of human beings with dementia. (Class C) Loprinzi CL. et al. Stewart SK.20:1163-69.

References

Third Edition/November 2009

Palliative Care

Monsky WL, Yoneda KY, MacMillan J, et al. Peritoneal and pleural ports for management of refractory ascites and pleural effusions: assessment of impact on patient quality of life and hospice/home nursing care. J Pall Med 2009;12:811-17. (Class D) Moro C, Brunelli C, Miccinesi G, et al. Edmonton symptom assessment scale: Italian validation in two palliative care settings. Support Care Cancer 2006;14:30-37. (Class D) Morrison RS, Meier DE. Palliative care. N Engl J Med 2004;350:2582-90. (Class R) Morrison RS, Penrod JD, Cassel B, et al. Cost savings associated with US hospital palliative care consultation programs. Arch Intern Med 2008;168:1783-90. (Class M) Moseley JR, Logan SJ, Tolle SW, Bentley JH. Developing a bereavement program in a university hospital setting. Oncol Nurs Forum 1988;15:151-55. (Class D) Mulligan K, Zackin R, Von Roenn JH, et al. Testosterone supplementation of megestrol therapy does not enhance lean tissue accrual in men with human immunodeficiency virus-associated weight loss: a randomized, double-blind, placebo-controlled, multicenter trial. J Clin Endocrinol Metab 2007;92:56370. (Class A) National Consensus Project. In Clinical Practice Guidelines for Quality Palliative Care. Second Edition. 2009. (Class R) National Quality Forum, The. National framework and preferred practices for palliative and hospice care. 2006. (Class R) Nesbit MJ, Hill M, Peterson N. A comprehensive pediatric bereavement program: the patterns of your life. Crit Care Nurs Q 1997;20:48-62. (Class D) Ngo-Metzger Q, August KJ, Srinivasan M, et al. End-of-life care: guidelines for patient-centered communication. Am Fam Physician 2008;77:167-74. (Class R) Norris WM, Wenrich MD, Nielsen EL, et al. Communication about end-of-life care between languagediscordant patients and clinicians: insights from medical interpreters. J Palliat Med 2005;8:1016-24. (Class D) Pargament KI, Smit BW, Koenig HG, Perez L. Patterns of positive and negative religious coping with major life stressors. J Scientific Study of Religion 1998;37:710-24. (Class D) Pearson EC, Woosley RL. QT prolongation and torsades de pointes among methadone users: reports to the FDA spontaneous reporting system. Pharmacoepidemiol Drug Saf 2005;14:747-53. (Class D) Periyakoil VJ. Fast fact and concept #043: is it grief or depression. 2nd edition. Available at: http:// www.eperc.mcw.edu/fastFact/ff_43.htm. Accessed April 8, 2008. (Class R) Phillip J, Smith WB, Craft P, Lickiss N. Concurrent validity of the modified Edmonton symptom assessment system with the Rotterdam symptom checklist and the brief pain inventory. Support Care Cancer 1998;6:539-41. (Class D) Post SG, Puchalski CM, Larson DB. Physicians and patient spirituality: professional boundaries, competency, and ethics. Ann Intern Med 2000;132:578-83. (Class X) Prendergast TJ. Advance care planning: pitfalls, progress, promise. Crit Care Med 2001;29:N34-N39. (Class R) Ptacek JT, Eberhardt TL. Breaking bad news: a review of the literature. JAMA 1996;276:496-502. (Class R) Puchalski C, Ferrell B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the consensus conference. J Palliative Med 2009;12:885-904. (Class R)

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References

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Puchalski CM. Spirituality. 2nd ed. Principles and Practice of Palliative Care and Supportive Oncology 2002:799-812. (Class R) Puchalski C, Romer AL. Taking a spiritual history allows clinicians to understand patients more fully. J Palliat Med 2000;3:129-37. (Class M) Ramkumar D, Satish SCR. Efficacy and safety of traditional medical therapies for chronic constipation: systematic review. Am J Gastroenterol 2005;100:936-71. (Class M) Reed PG. Spirituality and well-being in terminally ill hospitalized adults. Res Nurs Health 1987;10:335-44. (Class D) Remington R, Hultman T. Hypordermoclysis to treat dehydration: a review of the evidence. J Am Geriatr Soc 2007;55:2051-55. (Class M) Roberts JA, Brown D, Elkins T, Larson DB. Factors influencing views of patients with gynecologic cancer about end-of-life decisions. Am J Obstet Gynecol 1997;176:166-72. (Class D) Salacz M. Fast fact and concept #100: megestrol acetate for cancer anorexia cachexia. Available at: http://www.eperc.mcw.edu/fastFact/ff_100.htm. Accessed March 27, 2008. (Class R) Sasson M. Hypordermoclysis: an alternative infusion technique. Am Fam Phys 2001;64:1575-78. (Class R) Schneiderman LJ, Gilmer T. Teetzel HD, et al. Effect of ethics consultations on nonbeneficial life-sustaining treatments in the intensive care setting: a randomized controlled trial. JAMA 2003;290:1166-72. (Class A) Schwartz CE, Wheeler HB, Hammes B, et al. Early intervention in planning end-of-life care with ambulatory geriatric patients: results of a pilot trial. Arch Intern Med 2002;162:1611-18. (Class A) Searight HR, Gafford J. Cultural diversity at the end of life: issues and guidelines for family physicians. Am Fam Phys 2005;71:515-22. (Class R) Sheldon F. ABC of palliative care: bereavement. BMJ 1998;316:456-58. (Class Not Assignable) Sinclair CT. Communicating a prognosis in advanced cancer. J Support Oncol 2006;4:201-04. (Class R) Smith AK, Sudore RL, Pérez-Stable EJ. Palliative care for Latino patients and their families: whenever we prayed, she wept. JAMA 2009;301:1047-57. (Class R) Smith TJ, Coyne P, Cassel B, et al. A high-volume specialist palliative care unit and team may reduce in-hospital end-of-life care costs. J Palliat Med 2003;6:699-705. (Class M) Solloway M, LaFrance S, Bakitas M, Gerken M. A chart review of seven hundred eighty-two deaths in hospitals, nursing homes, and hospice/home care. J Palliat Med 2005;8:789-96. (Class D) Speck P. Spiritual issues in palliative care. Oxford Textbook of Palliative Medicine, Dogle, Hanks and McDonald, editors. Oxford, England: Oxford University Press. Chapter 11. (Class R) Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000;284:2476-82. (Class D) Steinhauser KE, Voils CI, Clipp EC, et al. "Are you at peace?" Arch Intern Med 2006;166:101-05. (Class D) Strickland JM, Huskey AG. Palliative care. Pharmacotherapy Self-Assessment Program, 5th Edition. 2004:191-214. (Class R)

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References

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Sulmasy DP. Spiritual issues in the care of dying patients: "... it's okay between me and God." JAMA 2006;296:1385-92. (Class X) SUPPORT Principal Investigators, The. A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995;274:1591-98. (Class C) Teno JM, Fisher ES, Hamel MB, et al. Medical care inconsistent with patient's treatment goals: association with 1-year medicare resource use and survival. J Am Geriatr Soc 2002;54:496-500. (Class B) Theobald DE, Kirsh KL, Holtsclaw E, et al. An open-label, crossover trial of mirtazapine (15 and 30 mg) in cancer patients with pain and other distressing symptoms. J Pain Symptom Manage 2002;23:442-47. (Class C) Thomas J, Karver S, Cooney GA, et al. Methylnaltrexone for opioid-induced constipation in advanced illness. N Engl J Med 2008;358:2332-43. (Class B) Turner R. Fast fact and concept #082: medicare hospice benefit part I: eligibility and treatment plan. Available at: http://www.eperc.mcw.edu/FFforPDA/416.htm. Accessed on July 24, 2006. (Class R) Turner R. Fast fact and concept #087: medicare hospice benefit part II: places of care and funding. Available at: http://www.eperc.mcw.edu/FFforPDA/444.htm. Accessed on July 24, 2006. (Class R) U.S. Census Bureau-American Fact Finder; Profile for General Demographic Characteristics: 2000; Geographic area: Iowa, Minnesota, North Dakota, South Dakota, and Wisconsin. Available at: http:// www.census.gov/census2000/states/mn.html. Accessed July 2006. (Class R) VandeCreek L, Burton L. Professional chaplaincy: its role and importance in health care. 2001. (Class R) Vandekieft GK. Breaking bad news. Am Fam Phys 2001;64:1975-78. (Class X) Volicer L. End-of-life care for people with dementia in residential care settings. Alzheimer's Association. 2005. (Class R) Warm E. Fast fact and concept #012: myths about advance directives. Available at: http://www.eperc. mcw.edu/FFforPDA/104.htm. Accessed on July 24, 2006. (Class R) Weissman D. Fast fact and concept #019: taking a spiritual history. Available at: http://www.eperc. mcw.edu/FFforPDA/119.htm. Accessed on July 24, 2006. (Class R) Werth Jr JL, Gordon JR, Johnson Jr RR. Psychosocial issues near the end of life. Aging Ment Health 2002;6:402-12. (Class R) Wilner LS, Arnold RM. Fast fact and concept #093: cannabinoids in the treatment of symptoms in cancer and AIDS. 2nd ed. Available at: http://www.eperc.mcw.edu/fastFact/ff_93.htm. Accessed March 27, 2008. (Class R) Wood GJ, Shega JW, Lynch B, Von Roenn JH. Management of intractable nausea and vomiting in patients at the end of life: "I was feeling nauseous all of the time...nothing was working." JAMA 2007;298:1196-1207. (Class R) Xing JH, Soffer EE. Adverse effects of laxatives. Dis Colon Rectum 2001;44:1201-09. (Class R) Zier LS, Burack JH, Micco G, et al. Surrogate decision makers' response to physicians' predictions of medical futility. CHEST 2009;136:110-17. (Class D)

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Measurement Specifications • Key Implementation Recommendations • Knowledge Resources • Resources Available Copyright © 2009 by Institute for Clinical Systems Improvement 60 . The subdivisions of this section are: • Priority Aims and Suggested Measures . strategies and measurement specifications for use in closing the gap between current clinical practice and the recommendations set forth in the guideline.ICS I I NSTIT U T E F O R C L I N I C A L S YSTE M S I M P ROV E M E N T Support for Implementation: Palliative Care This section provides resources.

www. 3) Possible measure for accomplishing this aim: a. (Annotations #4.washington. debilitating disease with documentation in the medical record of a palliative care discussion.icsi. debilitating disease with documentation in the medical record of a referral to palliative care consultation. Improve the assessment of the identified patient's palliative care needs utilizing the seven domains of palliative care. (Annotation #3) Possible measures for accomplishing this aim: a. 5-11) Possible measures for accomplishing this aim: a. (Refer to http://depts. debilitating disease who have a completed Palliative Care Screening Tool documented in the medical record. as available in the community. (Annotations #1. Percentage of adult patients with a progressive. 4. Percentage of adult patients with a progressive.html or http://depts. washington. b. b.Third Edition/November 2009 Palliative Care Priority Aims and Suggested Measures 1. Increase palliative care planning with patients who have been identified in the early stages of a progressive debilitating disease. 2. Percentage of adult patients with a progressive. debilitating disease who have a completed Edmonton Symptom Assessment System (ESAS) assessment documented in the medical record. Percentage of adult patients with a progressive. Percentage of patients with a score ranging from 85-190 points on the Quality of Communication Survey tool. (Annotation #4) Possible measures for accomplishing this aim: a. Percentage of adult patients with a progressive. Increase the identification of patients who are in the early stages of a progressive. Percentage of providers who have had education and training regarding palliative care concepts. debilitating disease who would benefit from palliative care services.pdf) b. b.org Institute for Clinical Systems Improvement 61 . c. 3. Percentage of adult patients with a progressive. debilitating disease with documented referral to home care/public health nursing consultation. c. debilitating disease who have a palliative care plan documented in the medical record.edu/~eolcare/instruments/index. Percentage of providers who have training in the use of scripting for palliative care discussions.edu/eolcare/instruments/qoc%20online%20version-rev. Percentage of adult patients with a progressive. Improve the effectiveness and comfort level of the primary care provider in communicating the necessity and benefits of palliative care with those patients with a progressive. debilitating illness. debilitating disease who have a documented assessment that addresses the seven domains of care.

debilitating disease who have a revised. (Annotations #4. Percentage of adult patients with a progressive. Percentage of adult patients with a progressive. Percentage of adult patients with an identified proxy decision-maker documented in the medical record. 10) Possible measures for accomplishing this aim: a. b. documentation and ongoing utilization of advance directives for patients with a progressive.org Institute for Clinical Systems Improvement 62 .icsi. c. (Annotations #4. b. debilitating disease who have documentation in the medical record of a completed advance directive. Return to Table of Contents www. Increase the completion. Percentage of adult patients who have a completed POLST form in the medical record. 5-11) Possible measures for accomplishing this aim: a. 6. Percentage of adult patients with a progressive. utilizing the seven domains of care. documented care plan that addresses the seven domains of care. debilitating disease who have a revised Edmonton System Assessment System (ESAS) assessment in the medical record. Improve the continual reassessment and adjustment of the patient's palliative care plan as the condition warrants. debilitating disease who have documentation in the medical record of a revised advance directive. debilitating illness. d. Percentage of adult patients with a progressive.Priority Aims and Suggested Measures Third Edition/November 2009 Palliative Care 5.

Medical records are reviewed to determine whether there is any evidence of a palliative care plan in place. social aspects. debilitating disease seen each month. These include. debilitating disease who have a palliative care plan documented in the medical record. and care of the imminently dying patient. Denominator: Method/Source of Data Collection A random sampling of at least 10 adult patients with a specified progressive.org 63 . spiritual/religious/existential aspects. Notes It is important to note that this measure is applicable to any and all progressive.Priority Aims and Suggested Measures Third Edition/November 2009 Palliative Care Measurement Specifications Possible Success Measurement #4a Percentage of adult patients with a progressive. debilitating disease. ethical/ legal aspects. Time Frame Pertaining to Data Collection Data can be collected monthly. cultural aspects. debilitating disease who have a palliative care plan in chart Total # of adult patients with the specified progressive. debilitating disease" needs to be predetermined by the medical group prior to data collection.icsi. "Specified progressive. psychological aspects. Population Definition Data of Interest Adult patients with a diagnosis of a progressive. # of adult patients with the specified progressive. but are not limited to: • • • • • Pulmonary disease Cancer/neoplasm Liver disease Renal disease Neurological disorders: Stroke Parkinson's Amyotrophic lateral sclerosis Multiple sclerosis Return to Table of Contents Institute for Clinical Systems Improvement www. debilitating disease. debilitating disease Numerator/Denominator Definitions Numerator: A completed palliative care plan addresses all seven domains of care: physical aspects.

The content is supported by evidence-based research. noting conflict of interest and/or disclaimers as appropriate. Develop scripts for health care providers that will assist them in initiating and discussing palliative care services. ICSI members have access to a broad range of materials including tool kits on CQI processes and Rapid Cycling that can be helpful. you must be logged in as an ICSI member. Return to Table of Contents www. To obtain copies of these or other Knowledge Resources. Develop a process for timely referral to palliative care consultation for patients with a progressive. Develop a process that will allow providers to identify and assess patients who would benefit from palliative care services. The content clearly states revision dates or the date the information was published. Return to Table of Contents Knowledge Products and Resources Criteria for Selecting Resources The following resources were selected by the Palliative Care guideline work group as additional resources for providers and/or patients.icsi. The content includes the source/author and contact information.org Institute for Clinical Systems Improvement 64 . 2. To access these materials on the Web site. patients and families regarding the elements and appropriateness of palliative care.icsi. go to http://www. This process should include the use of a screening tool that utilizes the seven domains. 4. 1. In addition to the resources listed in the table.org/improvement_resources. • • • • • The site contains information specific to the topic of the guideline. Resources Available to ICSI Members Only ICSI has a wide variety of knowledge resources that are only available to ICSI members (these are indicated with an asterisk in far left-hand column of the Resources Available table). It is important to address the difference between palliative care and hospice.Third Edition/November 2009 Palliative Care Key Implementation Recommendations The following system changes were identified by the guideline work group as key strategies for health care systems to incorporate in support of the implementation of this guideline. The following criteria were considered in selecting these resources. The resources in the table on the next page that are not reserved for ICSI members are available to the public free-of-charge. The content is clear about potential biases. 3. debilitating disease. Develop a process to provide education to clinicians.

emotional.org 65 Institute for Clinical Systems Improvement . http://www." These talking points have the messages you need to get the attention of administrators. a program of the National Hospice and Palliative Care Organization (NHPCO). personal.org Caring Connections Health Care ABHPM promotes excellence in the Providers care of all patients with advanced. Health Care Providers. Health Care Provider http://www.org American Academy of Hospice and Palliative Medicine American Academy of Hospice and Palliative Medicine American Board of Hospice and Palliative Medicine (ABHPM) A professional organization specializing Health Care in hospice and palliative care medicine.aahpm.palliativedoctors." The documents address medical.org/tools-forpalliative-care-programs/ marketing-tools/talking-points * Available to ICSI members only. non-profit organization whose certificate is recognized as signifying a high level of physician competence in the discipline of palliative medicine.caringinfo. Providers An excellent resource for providers to share with patients and families. progressive illness through the development of standards for training and practice in palliative medicine.icsi. Patients and Families http://www.org/tools-forpalliative-care-programs/ www. The Board is an independent.capc. Caring Connections. supported by a grant from The Robert Wood Johnson Foundation.agingwithdignity. Health Care Provider http://www. Audience Patients and Families Web Sites/Order Information http://www. and spiritual needs that should be addressed when an adult or child is seriously ill and unable to speak for themselves.org Center to Advance Palliative Care (CAPC) CAPC provides health care professionals with the tools and training necessary to start and sustain successful palliative care programs. patients. clinicians.org Patients and Families http://www.org http://www. Return to Table of Contents Center to Advance Tools for Palliative Care Programs Palliative Care (CAPC) A collection of tools assembled by CAPC to assist in designing. strengthening.Third Edition/November 2009 Palliative Care Resources Available * Author/Organization Aging with Dignity Title/Description "5 Wishes" and "My Wishes.capc. is a national consumer and community engagement initiative to improve care at the end of life. families and potential donors.abhpm. maintaining and defending Palliative Care programs. "Talking Points.

com/about_ hc. Toolkit: Palliative Care The toolkit includes: • Palliative care screening tools • Palliative performance status scale • Palliative care overview handout • Scripting for conversations between primary care providers and patients about Fairview Palliative Care Clinic • Dictation template Health Care Professionals. Fourth Edition. Information includes: description of what palliative care is.getpalliativecare. Return to Table of Contents Institute for Clinical Systems Improvement Information Links for Brain Tumor Preparing for Approaching Death The article discusses the dying process.eperc. GetPalliativeCare. Materials include Fast Facts.icsi. Book: (ISBN 1-928560-30-2) Patients and Families This Web site contains educational resource material for health care educators and providers. Signs & Symptoms of Approaching Death The article describes the signs and symptoms of approaching death. and information on advanced directives. Health Care Provider To order: http://www.html http://www.com/ btlinks/death.icsi. exchange ideas. how it is different from hospice care.html http://www.org/improvement_resources/knowledge_resources/summary_reports/ patient_focus_group_reports/ http://www. Patients and Families Health Care Provider http://www. and get advice from their colleagues on operational issues affecting their palliative care programs.org/forums/ Patients and Families http//www.org/ hospic60.virtualtrials. Artificial Feeding.edu * ICSI * ICSI Members Summary Report: Palliative Care Patient Focus Group Report A summary of patient and caregiver focus groups.cfm www.hardchoices. and the Patient with a Life-Threatening Illness.com To download or read online: http://hardchoices. Third Edition/November 2009 Palliative Care Web Sites/Order Information http://www. Patients and Families http://www.org Hank Dunn Hard Choices EPERC End of Life/ Palliative Education Resource Center and the Medical College of Wisconsin Hospice Patients Alliance Hard Choices for Loving People: CPR. comprehensive palliative care information for people coping with serious.org 66 . Comfort Care.org Health Care Provider * Available to ICSI members only. complex illness.Resources Available * Author/Organization Title/Description Audience Center to Advance CAPCconnect Forum: A free resource Health Care Palliative Care (CAPC) for health care professionals who want Provider to share information.mcw.icsi.org The site is provided by the Center to Advance Palliative Care (CAPC) The Web site provides clear.hospicepatients.capc.

Hospice and Palliative Nurses Association. patient advocacy. National Hospice and Palliative Care Organization. exemplars illustrating implementation of the Guidelines. The organization is committed to improving end-of-life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people in America and their loved ones. and the Center to Advance Palliative Care.Resources Available * Author/Organization Barbara Karnes National Consensus Project Third Edition/November 2009 Palliative Care Title/Description Gone from My Sight. NHPCO is the largest non-profit membership organization representing hospice and palliative care programs and professionals in the United States..icsi.nationalconsensusproject. news briefs. It includes updated references for each of the eight domains. This Web site provides information about end-of-life care. Brief Pain Inventory).org National Palliative Care Research Center (NPCRC) Web site provides Measurement and Health Care Evaluation Tools for assessing: Provider Pain and Symptom Management (i.npcrc.g. Health Care Provider. The Dying Experience Audience Patients and Families Web Sites/Order Information Bookstores http:// www. Caregiver Assessment. Karnofsky Performance Scale).nhpco. http://www. Patients and Families http://www. org National Hospice and Palliative Care Organization Health Care Clinical Practice Guidelines for Provider Quality Palliative Care This is a revision of the original 2004 Clinical Guidelines with input from four major palliative care organizations: the American Hospice and Palliative Care Organization.e. facts and figures. conferences and education. and the relationship of the Guideline domains with the National Quality Forum’s Preferred Practices.org Institute for Clinical Systems Improvement 67 . Functional Status (e. and Quality of Life.org/resources/ * Available to ICSI members only.. Return to Table of Contents www. with resources. Edmonton Symptom Assessment Scale [ESAS]. Psychosocial Care.

SHM provides continual education and industry updates through its monthly publication. WI with trained facilitators to help patients.org/PC/ ClinicalInfo/ClinicalIdx. The assessment tools include including various tools such as the Edmonton Symptom Assessment System (ESAS). SHM also provides a forum for professional networking and education through its annual meeting. Patients and Families http://www.org Respecting Choices Society of Hospital Medicine A program developed in LaCrosse. It promotes the highest quality care for hospitalized patients. Resources include: Put It In Writing Brochure. The Hospitalist. The site also includes a link to the American Academy of Hospice and Palliative Medicine Fast Facts.icsi.putitinwriting. Health Care Providers. Audience Health Care Provider Web Sites/Order Information http://www. through education. articulate preferences in advanced care planning. http://hospitalmedicine. The form includes physician orders that follow patient wishes and treatment intentions.Resources Available * Author/Organization Palliative. POLST is designed to help health care professionals honor the end-oflife treatment desires of their patients. American Hospital Association POLST (Physician Orders for LifeSustaining Treatment Paradigm) Paradigm assessment tool.org is sponsored by the Center for Ethics in Health Care and Oregon Health & Science University Put It In Writing. and enhances the appropriateness and quality of patient care. Put It In Writing The Web site provides information about advanced directives as well as provides educational resources to raise awareness regarding this issue.palliative. as well as provides opportunities and support to hospitalists. and through The Journal of Hospital Medicine.org SHM is the largest organization in the Health Care nation representing hospitalists and the Providers practice of hospital medicine.respectingchoices.org * Available to ICSI members only. Patients and Families http://www.org The Web site provides clinical information to health care professionals regarding palliative care.edu/ethics/polst/ Patients and Families.html POLST.org 68 .ohsu. Wallet ID. advertisements and links. Health Care Providers.org (Regional Palliative Care Program in Edmonton Alberta) Third Edition/November 2009 Palliative Care Title/Description Palliative. Health Care Providers http://www. along with their health care agents. Return to Table of Contents Institute for Clinical Systems Improvement www. research and advocacy.

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