ELECTIVE 1: HOSPICE PALLIATIVE CARE Principles of palliative care 1. Affirms life and regards dying as a normal process 2.

Intends neither to hasten or postpone death 3. Provides relief from pain and other distressing symptoms 4. Integrates the psychological, ethical, legal and spiritual aspects of patient care 5. Offers a support system to help patient live as actively as possible until death 6. Offers a support system to help the family cope during the patients illness and in their own bereavement. Pain Management Pain An unpleasant sensory and emotional experience associated with actual or potential tissue damage or describe in terms of such damage (Agency for Health Care Policy and Research, 1994) What the patient says it is, existing whenever he or she says it does (Institute for Clinical Systems Improvement, 2008) ABCs of Pain Assessment Ask about pain regularly. Assess pain systematically Believe the patient and their family in their reports of pain and what relieves it Choose the pain control options appropriate for the patient, family and setting. Deliver interventions in timely, logical, coordinated fashion Empower patients and their families. Enable patients to control their course to greatest extent possible Fine tune the pain plan as often as needed A Complete Assessment of Pain includes the following: Pain history Description Pain intensity or severity rating Location Effects of quality of life Precipitating factors Relieving factors Patient goals Pain history o When did the pain begin? o What is the current medication regimen? Description o A patients description of the kind of pain can help the nurse better assess the most appropriate medication o It can include dull, aching, gnawing, cramping, shooting piercing, sharp or burning Pain intensity or severity rating o Numerical scale of 0 10, zero representing no pain and ten indicating the most severe pain o Encouraged patient to keep a log of pain intensity scores at home to report during follow-up visits or phone calls Location o Ask the patient to indicate exactly where the pain is occurring and if it radiates Effects of quality of life o How does the pain affect the patient?

o Has it impacted relationships? o Does it interrupt sleep? o Affect appetite? o Increase patients reliance on others for activities of daily living? Precipitating factors o What makes the pain worse? o Is it associated with certain activities? Relieving factors o What helps? o Is the pain better at certain times? Patient goals o What is the patients acceptable level of pain on a zero to ten scale? Principles of Clinical Pain Management (WHO,1990) Individualize the treatment regimen to the needs of the patient and family caregiver Use the simplest dosage schedule and least invasive pain management modalities first Follow the WHO three-step analgesic ladder Avoid polypharmacy The patient should be on only one long-acting opioid for constant pain. The breakthrough drug should be the immediate-release preparation of the sustained-release drug if possible; that is, a patient taking sustainedrelease morphine should use liquid morphine for breakthrough rather than hydrocodone or hydromorphone Three-Step Analgesic Ladder Step one For mild to moderate pain, use a non-opioid, such as ibufropen or acetaminophen Consider adjuvant medication Step two For persistent or increasing pain, add an opioid Consider adjuvant medication Step three For continuing pain, or for moderate to severe pain, increase the opioid potency or dose Consider adjuvant medication Medicate on regular schedule, not a p.r.n. To ensure consistency in the blood level of the medication Prevents recurrences of pain In addition to the regularly scheduled medications, have a breakthrough or rescue doses of pain medication available as needed Remember: as the regularly scheduled dose is increased, the breakthrough dose must also be increased Adjuvant Pain Medications Enhance the effectiveness of other conventional analgesics and also provide independent analgesia for specific type of pain Common Adjuvants Tricyclic antidepressants Effective for neuropathic pain Anticonvulsants

Used to manage neuropathic pain, especially pain described as lancinating or burning, or other neuropathic pain that does not responds to antidepressants Corticosteroids Useful for severe metastatic bone pain and in reducing pain and headaches associated with cerebral and spinal cord edema Nonsteroidal anti-inflammatory drugs (NSAIDS) First line treatment for bone metastases and other inflammatory condition Topical therapies Relieve neuropathic pain Complementary or Integrative Therapies Massage therapy Therapeutic touch Physical therapy: exercise, range of motion Heat/cold application Acupuncture/acupressure Relaxation and imagery/meditation SYMPTOM MANAGEMENT Fundamental aspect of palliative care (WHO 2003) Primary therapeutic goal of service delivery and is aimed at subjective well being (De Conno & Martini 2001) Symptom Subjective evidence of disease This subjectivity means that assessment, measurement and treatment of symptoms depend on the descriptions of symptoms given by the patient Common symptom in cancer patients Physical Lack of energy, pain, drowsiness, dry mouth, nausea, and anorexia Psychological Worrying, feeling sad, feeling nervous, difficulty sleeping, feeling irritable and difficulty concentrating Suffering Encompasses the meaning of the symptom to the patient or family and this meaning will affect the degree of distress felt and the choices made about treatments The key is to understand suffering as part of the patients perspective on life and the world, and that the control of physical symptoms is only part of alleviating that suffering Key Principles of Symptom Management In implementing any intervention or treatment related to the management of symptoms the preferred choice of the patient should be at the forefront of the minds of practitioners Includes agreeing to non treatment as an option Open communication involving not only patients and family members but also all relevant health professionals will facilitate informed decision-making Listening to the patients own story, including past and present life experiences, will assist the professional to understand the impact of symptoms from the patients perspectives Process of Symptom Management

Evaluation Explanation Management Monitoring Attention to detail

Evaluation Establishing the cause of the symptom involves taking a history, including general trends and recent changes Attention should be paid to the effectiveness of interventions that have already been implemented Because of the complexity of determining the symptoms in a palliative care it can be helpful to think in three broad categories? Is the symptom due to the disease itself, the treatment, concurrent medical conditions or a combination of all three? Regardless of the cause, a decision must be taken as to whether the symptom is reversible, treatable or a terminal event for the patient Assessment Tools Palliative Care Assessment (PaCA) Tool Numerical scoring system that can be easily completed with the patient Verbal Rating Scales Category scales using various words placed in rank order at equal intervals along a line The words describe the intensity of the symptom using descriptors, for example: mild, moderate, or severe Some patients may find it difficult to verbalized the experience of a distressing symptom because the choice of words may not really accurately describe the experience Visual Analogue Scale The patient is asked to draw a mark at some point on a 10cm line The left end of the line indicates the least degree of the symptom and the right side indicates the worst degree of the symptom Scoring of the Palliative Assessment Tool Problem absent = 0 Problem present but not affecting the patients day = 1 Problem present and having a moderate effect on patients day = 2 Problem present and dominating the patients day = 3 Explanation Explanation about care and treatment options is vital to the delivery of effective care and empowers patients and carers to be involved as equal partners in the decision making process. Information about the disease process and significance of symptoms should be provided to patients when they need it, and not at a time convenient for the professionals involved in the care Information should be provided in a sensitive manner Management Management builds on the assessment process Identify the cause and determine what is reversible or treatable The patients priorities must be considered and realistic goals set in conjunction with the patient and then documented in the management plan

 Treatment and interventions should be tailored to meet the needs of the individual Monitoring Determine the efficacy of interventions and facilitate regular reassessment of the severity of the symptom and impact on the patient Attention to Detail The missing details by health professionals can have dire consequences Crucial time can be wasted by not listening to the patient at the initial assessment stage, by prescribing but not ascertaining the practical availability of medications and assessing side-effects, and by failing to ask the right questions to elicit the correct information when monitoring interventions Common Symptoms Associated with Patients at the End of Life Dyspnea Constipation Diarrhea Nausea Weight loss and loss of appetite (from anorexia and cachexia) Skin disorders Asthenia and fatigue Anxiety Depression Dyspnea Subjective experience o Difficulty in breathing when carrying out an activity that would under normal circumstances not induce such difficulty Common Palliative Approaches to Dyspnea Oxygen and humidified oxygen via nasal prongs Nasal prongs can be irritating to the skin and nostrils. Monitor the skin regularly for signs of irritation Opioids It alters the central perception of dyspnea Inhalers and nebulizers Saline nebulizers or inhalers with beclomethasone or albuterol used on a regular basis can provide relief Nebulized morphine can also be an effective and relatively noninvasive way to relieve dyspnea Anxiolytics Breathlessness can be exacerbated by anxiety It can be used in conjunction with other therapies to relieve the symptoms Simple Remedies to Relieve Breathlessness (non pharmacolgical) Use a fan to help circulate the air Open a window Restrict the number of people in the room Reposition the patient by elevating the head of the bed Constipation Common Treatments for Constipation Stimulants laxatives Stimulates bowel activity

 Ex: senna, casanthranol, and bisacodyl Osmotic laxatives Draws water into the bowel Ex: lactulose, milk of magnesia, Miralax, and magnesium citrate Stool softeners Increase the water content of the stool Ex: sodium docusate and calcium docusate A combination of laxative and stool softener is often the most effective for patients taking opioids Lubricant stimulants and enemas Therapies in this category include glycerine suppositories Dietary and other interventions can also be effective for some type of constipation Ex: prune juice works as stimulant laxative Diarrhea Less common symptoms Can be caused by bowel obstruction, medications, gastrointestinal bleeding and poor absorption Common treatments: antidiarrheal medications fluid replacement Dietary interventions: avoidance of gas-producing foods and lactose Nausea and Vomiting Can be caused by increased cerebral pressure, mechanical obstruction, medications or infections Management: assessment which includes of a pattern exists (ex: after certain medications, meals or movement Clinical treatment depends on the underlying cause Weight Loss and Loss of Appetite Pharmacologic interventions Megestrol, prednisone, or dexamethasone to stimulate the appetite and control other symptoms such as nausea and vomiting Nonpharmacologic interventions Offering the patients favorite foods and nutritional supplement Reducing portion sizes and eliminating dietary restrictions Discussing with the patient and family the natural progression of the disease and what alternatives can be used in place of food to show love and nurturing Using alcohol such as glass of wine as an appetite stimulant Skin Disorders Common types of skin problems Pressure ulcers Pruritus and skin irritation Pressure ulcers Palliative goals should focus on prevention of further breakdown and management of discomfort and odor Pay particular attention to the heels, sacrum, and elbows Interventions: Frequent turning and repositioning

 Use of specialized pressure-reducing surfaces such as mattress overlays or low-air-loss beds Meticulous hygiene and positioning Pruritus and skin irritation Skin itching and discomfort can be a source of great distress for patients Management: Assessment Location and description of the discomfort--- itching, burning, tickling, pins and needles Interventions: Non pharmacologic: Thorough cleansing, warm baths, cold packs and topical creams Pharmacologic: corticosteroids, anti depressants or antihistamines to provide relief Fatigue Loss of energy and tiredness Management: help the patient and family to understand the progression of the disease and to adapt to the patients fluctuating energy levels Pharmacological intervention: use of steroids or low-dose stimulants Anxiety Can be caused by fear of the future, worry about loved ones, fear of pain and general feeling of being overwhelmed by the situation Symptoms: increased agitation and restlessness, breathlessness, hyperventilation and profuse sweating Pharmacologic intervention: benzodiazepines Depression Persistent feeling of hopelessness and helplessness Questions to Ask Patients about Depression (the MacArthur Initiative) In the past 2 weeks, how often have you been bothered by the following problems? Feeling down, depressed or hopeless Having little interest or pleasure in doing little things Feeling bad about yourself Having thoughts in hurting yourself in some way Steps in Treating Depression 1. Address the distressing physical symptoms such as pain 2. Engage other team members to create a comprehensive treatment plan Depression in terminally ill patient can be treated with antidepressant medications, counseling and alternative therapies such as relaxation and other guided imagery In case of a very short prognosis, low-dose amphetamines can be helpful in lifting the moods Guiding Patients and Families: Preparing, Listening and Assuring Assure patients that their symptom needs will be addressed Ex: I know that nausea and upset stomach are distressful for you. We are going to try a new medication. If that doesnt work, we have some other therapies. Heres what you can expect when we start the medication Explain therapies in terms patients and families can understand

Instead of saying, Were going to start oxygen at 2L per nasal cannula, try, Sometimes a little extra oxygen can help you breathe better. Were going to start some oxygen that will come through this tube directly into your nose. It will make a little whooshing noise. That way, you know its on. If it makes you uncomfortable, let us know. Prepare patients and families for what might come next You should find with this new medication that you will be sleepy at first, but after you get used to it, that side effect will go away. It usually takes a day or two. Listen carefully to what the patient and family say about symptoms If a patient says, I get this real anxious feeling at night when the lights are turned off, you might want to offer to leave the lights on , the curtain open or the door open. Engage the patient and family in the care plan Teach the family how to turn and position the patient for more comfort. Ask, What would you like to know? What are your goals? Principles of palliative care 1. Affirms life and regards dying as a normal process 2. Intends neither to hasten or postpone death 3. Provides relief from pain and other distressing symptoms 4. Integrates the psychological, ethical, legal and spiritual aspects of patient care 5. Offers a support system to help patient live as actively as possible until death 6. Offers a support system to help the family cope during the patients illness and in their own bereavement. Ethical Consideration Ethics Systematic examination of the moral life, which seeks to provide sound justification for moral decisions and actions of people Ethical Having to do with the study of morality (an ethical question) Conforming to recognized standards of practice (ethical conduct) Classification of Ethical Principles Respect for the individual Autonomy Justice and utility Beneficence Non-maleficence Respect for the individual Reflect the central role of the patient and the importance of a person-focused approach care Valuing the patient Confidentiality and privacy Autonomy Respect for autonomy Confidentiality Consent Effective communication Respecting choices Ex: patient who chooses to die at home

Justice and Utility The ethical principle of justice demands that care provision is based on current evidenced and best practice Utility Providing the greatest good for the greatest number of people Beneficence Doing good Non-maleficence Not causing harm Beneficence and Non-maleficence Beneficence Doing good Non-maleficence Not causing harm If a patient refuses a specific course of treatment, with the view that it wont benefit their quality of life, the nurse is obliged to respect this decision unless it may cause them additional harm Legal Considerations Advance Directives Significant part of the requirements of the Patient Self-Determination Act Include living will, the durable power of attorney for health care, and the directives for organ donation Living will Describes the treatments a patient does and doesnt if he becomes incapacitated and has no chance of recovery Nurse role in implementing living will Inform the patient of his options Legal immunity is provided to caregivers who complied with appropriately prepared living will Situations when a health care provider is permitted to reject a health care directive The decision is objectionable to the conscience of the health care provider The decision violates a facility policy based on reasons of conscience, as in the case of hospital operated by a religious organization The decision would perpetuate medically ineffective health care, or the care given would violate the generally acceptable health care standards then in use by the health care provider or the facility Health care directives become effective when: The patient is close to death from a terminal condition or is judge to be permanently comatose The cant communicate his own wishes for his medical care --- orally, in writing, or through gestures The health care staff in attendance are notified of the patients written instructions of his medical care Durable Power of Attorney Also known as health care proxy

 Legal documents that designates a person to make medical decisions for the patient if cant communicate his wishes Organ Donation Obtaining consent Organ donor card When no legal evidence of consent is present, it can be confirmed by Spouse Adult son or daughter Either parent Adult brother or sister Guardian at time of death Any other authorized person Psychosocial, spiritual and cultural care Psychosocial Care Critical aspect of the palliative care process Involves grief, anxiety, and depression GRIEF The emotional and physical reaction to a loss A normal process expressed in individual ways Normal internal and external response experience to the perception of loss One of the most pervasive emotions produced by loss, dying and death Loss Is a real, perceived, or anticipated taking away of something The loss can physical, symbolic, or social Grief Encompasses the mental, physical, social and emotional responses to loss Mourning Is the outward social expression of a loss --- part of the process of adopting to the loss Bereavement Is the period of grief and mourning It includes the inner feelings and outward reactions of the survivor Stages of Grieving/Dying (Kubler-Ross) Stage Denial Clinical Manifestations This cant be true.Ill be just fine after surgery(or radiation or chemotherapy). Client and family may search for health care providers who will give more favorable opinion or may seek alternative therapies. Why me? Client and family have feelings of resentment, envy or anger directed at client, family, health care providers, God and others. I just want to see my daughters graduation, then Ill be ready Client (or family ) asks for more time to reach an important life event and may make promises to God.

Anger Bargaining

Depression I just dont know how my wife will get along after Im gone. Family and client may grieve or mourn for impending losses.

Acceptance I have no regretsIve done everything I wanted to in my life and am proud of what Ive accomplished. Client and family are neither angry nor depressed. ANTICIPATORY GRIEF The emotional and physical reaction to an impending loss and can be experienced by the patient and the family It intensifies as the time of death approaches ACUTE GRIEF Occurs during the loss interval (ex. At the time of death) and is experienced by the survivirs of the deceased The intensity is expected to decrease over time MOURNING The outward display of the internal physical and emotional feelings associated with the loss. Religious beliefs, cultural norms and customary rituals characterize mourning behaviors Anxiety Relates to uncertainty about the manner and time of death Assessment Ask the patient directly Signs and symptoms: muscle tension, irritability and obsessive statements or behaviors Management Explore how patient and family cope with anxiety in the past Reassure them that anxiety is common and manageable Suggests complimentary therapies: massage, meditation, or music Exercise or physical activity if patient is able Pharmacologic management Anxiolytic Benzodiazepine Depression Assessment Hopelessness Despair Thoughts of suicide Lack of participation in daily routine Sleeplessness Loss of appetite and weight Management Medications Psychostimulants Saferand have fewer adverse effects but may take weeks to provide significant therapeutic effects Selective serotonin reuptake inhibitor (SSRIs) Tricyclic antidepressants (TCAs) More useful for providing a better quality of life when time is short Methylphenidate (Ritalin) Dextroamphetamine (Dexedrine)

Corticosteroids has euphoric effect and stimulate appetite; useful in short term situations Prednisone Psychological therapy Supportive counseling, spiritual counseling and ongoing monitoring of patients mental state Complimentary therapy such as massage

Spiritual Care Spiritual The aspect of a person that searches for meaning in life Connects person to person and person to nature Religion Connects a person with his idea of a supreme being, a divine source, or a force that actively influences his life The most basic level of spiritual care practice promote a meaningful life Time alone Time with family Connection to nature A calm environment Music, poetry and art Breathlessness/Dyspnea Breathlessness Awareness of breathing Defines the subjective experience on which management should be based Dyspnea Difficulty in breathing when carrying out an activity that would under normal circumstances not induce such difficulty Relates more to the symptoms Incidence: Breathlessness an indicator of poor prognosis, occurring in 70% of patients in the last 6 weeks of life Contributes to the symptom burden in 50% of patients in the last 6 week of life Inclusive of patient with a diagnosis of lung cancer, chronic obstructive pulmonary disease(COPD) and cardiac failure Pathophysiology The control of normal breathing can be voluntary or involuntary Voluntary breathing allows for activities such as eating or talking Involuntary breathing is regulated by oxygen delivery and acid-based balance Breathlessness arises from discrepancies between peripheral sensors in the lung, respiratory muscles and chemoreceptors. This results in the imbalance between respiratory drive and respiratory load. There is also a conscious awareness of the effort needed to breathe and, as with any subjective experience, the higher centers in the brain trigger an emotional response. Anxiety is particularly damaging, as it creates a cycle of muscle tension that in turn increases the effort necessary to boost the respiratory rate. Evaluation

 Patients with diagnosis of cancer have high incidence of general medical conditions that may be contributing to the breathlessness, including pulmonary embolism and pneumonia Breathlessness may be the result of the cancer treatment itself, for example chemotherapy causing anemia or radiation therapy reducing in radiation fibrosis of the lungs; hence the importance of thorough physical examination, historytaking and always weighing the benefit of any intervention compared with the burden of treatment for individual Visual analogue scale can provide a simple, self-reporting tool that is sensitive and reliable in measuring breathlessness Explanation An explanation of problem causes, non pharmacological and pharmacological interventions and planned outcomes is especially important given the level of anxiety/depression associated with breathlessness Management Aimed at treating the cause example antibiotics for a chest infection, radiotherapy for intrathoracic disease or pleural aspiration for effusion If treating the cause is not a viable option then symptomatic treatment will be necessary Non pharmacological All communication should be clear and unambiguous to minimize anxiety component Anxiety will exacerbate the problem by increasing oxygen consumption Any handling should be fully explained and carried out in a slow efficient manner allowing for a rest between each stage of the procedure Limit interactions with the patients Used of closed questions is encouraged o Keep the effort to a minimum Minimize the effort required during mealtimes Cared for near an open window Positioned slow fan directly into the patients face o Reduces the sensation of breathlessness by affecting nerve receptors in the trigeminal nerve distribution Sitting upright in a supported position or leaning slightly forward resting arms on a table o Help reduce the ventilation perfusion mismatch Exercise o Respiratory muscles and peripheral muscle training reduce breathlessness Ensure a restful night sleep o Fatigue may exacerbate distress o If fearful, presence of someone on the bedside or the use of a night lamp may be of help. Proactive approach to managing breathlessness o Educating patients in coping techniques well will empowers patients to regain some level of control over the symptom, thus reducing associated fear and anxiety Pain International Association for the Study of Pain (IASP 1994) An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage