106 _Journat of Pain and Symptom Management Vol. 24 No. 2 August 2002 A Model to Guide Patient and Family Care: Based on Nationally Accepted Principles and Norms of Practice Frank D, Ferris, MD, Heather M. Balfour, BA (Adv), Karen Bowen, MD, Justine Farley, MD, Marsha Hardwick, RN, BScN, CON(C), ‘Claude Lamontagne, MD, Marilyn Lundy, RN, PIN, ‘Ann Syme, RN, MSN, and Pamela J. West, RN, MSc, ACNP, CON(C) ‘San Diego Hospice (FDP, K.B.), San Diego, California, USA; Saskatchewan Heath District Management Services (H.M.B.), Regine, Saskatchewan, Canada; St. Mary's Hospital Center (LF), ‘Montreah Quebec, Conado; Consultant (M.HL), Totenhan, Ontario, Canada; Maison Mickel Sarrsin (CL), Sillry, Quebec, Canada; St, Ebzabeth Health Car (ML), Matharn, Ontario, Canada; British Columbia Cancer Agency (A.S), Vitoria, British Columbia, Canada; ‘and Lakeridge Health Corporation (P].W.), Oshawa, Ontario, Canada ee nee Introduction Since the discovery of antibiotics in the 1940s, ‘modern medicine has cured a few diseates/con- ditions, and has markedly prolonged the exper cence of living with a chronic illness and the dy- {ng process (in the last 60 years, average life ‘espectangy for adults in North America hi creased by approximately 20 years).! Today, ‘most patients and families will experience multi- ple manifestations and predicaments as a result cof the patient’s underlying disease process, caus ing them considerable suffering and changing the quality oftheir lives. In an effort to address the issues that were ‘causing suffering during the dying process, the modern hospice and palliative care movement started during the 1960s in the United King- dom,? and the 1970s jn both the United States (1972) and Canada (1975). (The term “pall tive care” or “soins palliatif” in French was i tially developed by Balfour Mount, Montréal, Canada, a8 a phrase that would be synonymous Adress reprint quests to: FrankD. Ferris, MD, San Di ego Hospice, 4511 Third Avenue, San Diogo, CA ‘9810841407, USA. Copyright © 2002 by the Canadian Hospice Pallia- tive Gate Association and Frank D. Ferris, MD. US. Cancer Pain Relief Committe, 2002 Publisheal by ever, New Vork, New York with “hospice care” for use in the Francophone ‘community of Canada where “hospice” was not ‘an acceptable term to describe end-oflife care [due to its longstanding history as a term to describe shelters for the wayward and the dis advantaged). This grassroots movement devel- ‘oped where there were champions. Approaches {0 care were usually based on individual opin- jon, There was considerable variability in the services offered by individual programs and in- consistent access to care. To bring definition to the practice of hospice and palliative care, and address the variability, inconsistency, and gaps in care, several provider and accreditation associations initiated the de- velopment of national standards of practice rel atively carly in the movement (see the lst in the Methods). In Canada, the development of stan- dards of practice started separately in both Brit ish Columbia and Ontario in 1989. In 1993, the Canadian Hospice Palliative Care Association (CHPCA) invited everyone who was developing standards for hospice or palliative care to form a single committee to guide the development of national rather than regional standards of prac- tice. The resulting consensus-building process Jed to a model to guide patient and family care that is based on nationally accepted definitions ‘of commonly used terms, values, guiding princi- (0885 2924/02/$-s0e front matter PI 50885.9924(02)00408:2Vel 24 No.2 August 2002 ples, foundational concepts, and principles and norms of practice, Methods To establish a national model, the CHPCA Standards Committee elaborated a S-phase consensus-building process based on a Delphi technique® that took from 1998 to 2002 to com plete, From the outset, The CHPCA Board of Directors agreed that consensus would be reached if 25% of the respondents agreed with fan item under consideration (using a 6-point Likert scale), and there were not many related comments, During Phase 1 (from 1998 to 1995), the 14 members of the Standards Committee reviewed all of the existing standards of practice, includ- ing products from Canada: Health and Welfare Canada," the Canadian Council on Health Ser= vices Accreditation, 4? and Nova Scotia Depart ment of Health and Fitness from the United States: the Joint Commission on Accreditation of Healthcare Organizations the Founda: tion of Record Education of the American Med- ical Record Association,§* and the National Hos- pice Organization;!* from the United Kingdom: the Department of Community Medicine Uni- versity of Sheffield, the Trent Hospice Audit Group," the National Council for Hospice and Specialist Palliative Care Services, and ‘The Royal College of Nursing: from the interna. tional Work Group on Death Dying and Be- reavement™#" and the related literature22-# They used these early products as the basis for their discussion to establish draft principles to guide palliative care practice by committee con- sensus. Their proposed model was published in 1995 as Palliative Care: Towards Principles of Prac- sie for Patitivein both English’ and French.:® Subsequent to widespread dissemination and use ofthese draft Prinaples of Practice, the CHPCA Standards Committee embarked on Phase 2 of the consensus building process. From 1997— 1998, over 700 stakeholders (including con- sumers) came to one of 17 workshops (I English and 1 in French) to learn more about the Standards Committee’s intent and provide quantitative (Gpoint Likert agreement scales) and qualitative (writen and discussion com- ments) feedback on 101 key items selected from the draft Principle of Practice. A summary of the feedback received during the English ‘A Model to Guide Patient and Family Care 107 ‘consensus-building process was published in 1998 in How Close are We to Consensus?® The French consensusbuilding process required farther deliberations by Le Comité des normes de pratique de Association québécoise de soins palliati.. Their process culminated with the publication of Le Rapport Finale in 2000.52 For Phase 3, the feedback received during Phase 2 and an updated review of existing stan- dards of practice and literature™# were used to develop the 2001 Proposed Norms of Practice in both English® and French ® These were dissem- inated to stakeholders by a number of provincial supporters and the Intemet. After their review, stakeholders were invited to complete a 99.tem Internet-based questionnaire to again provide feedback to the CHPCA Standards Committee. ‘When analysis of the results in 2001 revealed that consensus had been achieved, the Stan- dards Commitee again synthesized the feed- back and literature, and evolved a national ‘model for hospice palliative care. This model ‘was approved by the CHPCA Board of Direc- tors, contextually translated into French with oversight from members of Le Comité des normes de pratique de l'Association quebé cose de soins paliatifs and the CHPCA Stan. dards Committee, and presented as A Model to Guide Hospice Palliative Care in. both English*® and French®? in March 2002, Results The Consensus-Building Process ‘The S-phase consensus>uilding process er gaged thousands of stakeholders (including consumers) to review the successive drafts and provide feedback to the CHPCA Standards Committee through their chosen representa- tives—706 stakeholders completed question- naires during Phase 2 and 419 stakeholders completed Internetbased questionnaires dur- ing Phase 3. Analysis of the extensive quantita- tive and qualitative data revealed consensus on "70% of the items after Phase 2 and 100% con- sensus after Phase 3, The result—agreement on the definitions of commonly used terms, values, guiding principles, foundational con: cepts, and principles and norms of practice to be used to guide both patient and family care (presented below), and the development and function of hospice palliative care organiza. tions, In addition to the summary presented in108 Reis this report, these are available for review and downloading in English at hup://www.cpea. net and in French at htp://wirwacsp-net. ‘The Model to Guide Patient and Family Care Basis of the Model, The Model to Guide Patient ‘and Family Cares built on the premise that care is a therapeutic intervention by both formal ‘and informal caregivers intended to change the experience of patients as part of family units"! as they live with, and transition through, their illness and bereavement (see Figure 1). Through this process, caregivers strive to address the expectations, needs, hhopes, and fears that patients and families de- velop as they face many issues that are the mi ifestations and predicaments created by the underlying disease or condition (Figure 2 lists the commonly occurring issues).*?3* All aspects of the model are based on the defi nitions of commonly used terms, including *hos pice palliative care,” and the values, principtes, and foundational concepts guiding all activities related to hospice palliative care (see Appendix). Process of Providing Care. The process for pro- viding care outlined in the model presumes that a therapeutic relationship between those who provide the care (caregivers) and those ‘who receive it (the patient and family asa unit) ‘evolves over time through a series of therapeu- tic encounters (see Figure 8). Each encounter includes six essential and multiple basic steps that guide clinical interactions (see Figure 4). Fig. 1. Paieot/famiy uations through ines aut beremernent - Vo 24No, 2 August 2002 Although these steps do not occur in any spe- cific sequence, each must be completed during each encounter. The actual content discussed during a given encounter will depend on the phase of the relationship (.., intake, ongoing ‘care, discharge), and who is present (ie par ticnt, family, physician, nurse, social worker, chaplain, volunteer, ete). To describe the process for providing care, ‘each essential step has one or more principles of practice and each basic step has one or ‘more norms of practice (siatements of desired “normal” practice to which all. caregivers should aspire), Although not specific, as they are based on consensus opinion and not data driven, they are intended to guide individuals and organizations that are developing theit ‘own principles and standards of practice tai lored to their particular community and cit ‘cumstances (see Appendix). Square of Care. Each of the essential and basic steps in the process of providing care can be uwsed to guide care for each of the issues com ‘monly faced by patients and families. Their in- terrelationship is illustrated in “The Square of are" shown in Figure 5, a “single page” concep- ‘wal framework that can be used to guide all of the activities related to patient and family care Preferred Practice and Data Collection /Decumenta- fion Guidelines, Although preferred practice and data collection/documentation guidelines ‘were not a part of the consensus-building pro- cess to date, the model and the principles and norms of practice will assist users to map exist- ing guidelines within the square of care, iden- Lify where guidelines don’t exist, and encour. age their development. Discussi Stakeholder Consensus Building Process ‘The Model to Guide Patient and Family Care was developed using a unique stakeholder con- sensusbuilding process that was based on a Delphi Technique,* and evolved from the ex: {sting standards of practice and literature that were available intemationally. The process in- corporated the opinions of hospice and pallia- tive care stakeholders from both the Anglo phone and the Francophone communitiesVol. 24 No. 2 August 2002, ‘A Model to Guide Patent and Family Care 109 DISEASE MANAGEMENT Prenarydanois, repress woe aan agnor (e8, townie potions ‘lagroses, exelace uso, ‘suma} Comartiaites (og, dalton, setae organ) ‘Adverse vent (03. side tects) Aeros Loss, GRIEF ese Gret(o9. act, Pans Ceceiony DEATH ‘sya goodeye) ging (29, ings, money, ‘orp, neugtis) Legacy vation Preparation fr expected death ‘Antelpaon and management of Dysilgica changes mts four ote Rts, le Pronourcaran, esteaton Piath care o tty, banding ofthe body Funeral, memotal eect, ebatene * citer comon syns ols, bt ee ot iid Gualesepirater:beatioenes ough eos, cap spe, agua being pte ‘Gustcntntnal sae vring compen, caipaon, bowel suteston ‘ral endo dy rn, maces. ‘Sh endian: dy herds, rts, es ross lobe) Bd Burcavenent ang rere creed ee END OF Lire GARE! Peseta nee MANAGEMENT ene an) Lsegeor tig ees Soe atiocen ‘business, closing relationships, Seer ee ms “oleprone access, angpotaton tral at bei, tne top ie wh oy, ‘fidends, cormmunity fs ‘eoaton bandonnert Safe, conferteg enionmect Pray. tac Rone, uals, recreation yocaton ity, Franc recurve, xponoes ocala pow cf atmey ex aaa Gunns custody nswes SPIRITUAL Meaning, vata ‘tnt, tanscondentt Values, beets, pretest, fatons ‘Split ators, tule Symbaloo ey Moun, bai, nea Geer als tortn, ore, ig, wes, eedog dows fin (lps, eel, ‘ncn, iesnins, Yrpiodena, joc da, pope eves Sypris Fig. 2, Issues common to illness and bereavement. within Canada. Each community informed the other, and ultimately, the model that evolved in- corporates both perspectives and is supported by everyone who participated, Of particular note is the fact that the model was developed independent of existing funding and service delivery models. It presents the “de- sired” or “ideal” principles and norms of pracuo Ronis etal rasen: taake Ongelng Cre Vol. 24 No. 2 August 2002 pauses: "Note: the numbers inthe figure only serve to highlight the sequence of encounters. Depending on the need for car, and ‘he length of involvement, hee may be ore or ewer eaccunes over the ration ofthe therapeutic restionship. Fig. 8. Successive encounters during the development of @ therapeutic relationship. tice in order to effectively address the multiple issues patients and families experience through ‘out the illness and bereavement experience in the 21st century. During the process, many of the stakeholders both reviewed the drafts with colleagues and used them in their organiza- tions. Asa result, the draft principles and norms of practice have already influenced the develop- ‘ment of several regional and national funding and service delivery models, and organizational and regional standards of practice. ‘During the consensus-building process, it be ‘came apparent that whereas specific therapeu- tic interventions may vary, the principles and norms of practice are the same whether the patient is at the end of life, or presenting for agnostic workup eaely in their illness experi ‘ence. It also became apparent that the princi ples and norms of practice for inpatient units, inpatient consult services, home care and vol unteer services are the same for both hospice and palliative care programs. To recognize the convergence of hospice and palliative care into fone movement, and acknowledge that they share the same norms of practice, the term “hospice palliative care” was coined. While “hospice palliative care” is the nationally ac- cepted term that will be used to describe care aimed at relieving suffering and improving the quality of living and dying in Canada, itis anticipated that individual organizations may ‘choose to use “hospice,” “palliative care,” or another term that is more acceptable to their community to describe the services they are providing, and their organization. Whatever the choice is, caregivers and organizations are ‘encouraged not to delay the delivery of care because they are conflicted over the choice of the term they will use to describe thei services. Why Norms? ‘As the model is built from the best available stakeholder opinions, it presents norms and not standards of practice. Norms are simple statements that present the “usual” or “aver- age” practice to which caregivers and organiza- tions can and should aspire (see Figure 6). ‘They are less specific or rigid than standards (which are defined as measurable conditions or states used as a basis for assessing quality ‘and quantity), Individual organizations will use the norms of practice to develop their own standards of practice based on their specific community and circumstances. With time, the norms of practice will be informed and modi fied by data collated from the many standards of practice that evolve across the country and internationally. Applications ‘The Model to Guide Patient and Family ‘Care was designed to guide the care provided by hospice palliative care experts, and all re- lated activites. It grew out of and includes the hospice and palliative care movements that ini-Vol 24 No, 2 August 2002 ‘A Model to Guide Patient and Family Gare ut ig: 4. Essential and basic steps during a therapeutic encounter. tially focused on end-oflife care. It is applica- ble to all settings of care. As patients and families desire/deserve the same approach to care and the same target outcomes irrespective of who is caring for them, the model is also applicable to the care provided by primary healthcare providers. As ‘with any other medical specialty, when primary providers don’t know how to manage an issue, or they are not achieving the target outcomes, or they need support for their own discomfort or distres, they are encouraged to seek const tation from hospice palliative eare experts Specific uses of the model include: 1. Its use by clinicians to guide functional in- quiry, issue identification, and the pro- cess of providing care.m2 Fes eal Vol. 24No. 2 August 2002 wales : Patient / Family Fig.5. The Square of Care. . The development of an organization's surategic and business plans, and its op- erations (see Table 1). ‘The development of a strategy for quality management, including out come assessment and performance im= provement. |. The development and refinement of ac- creditation standards, ‘The development of core competencies, educational curricula, and examination strategies for both primary and expert healthcare providers from all disciplines (including volunteers). . The review and development of regula. tions, policies, and funding and service delivery strategies. ‘The development of population data surveillance strategies. 8. The development of minimum/ticen- sure standards. 9, The mapping of existing literature, iden- tification of gaps in knowledge, and de- velopment of research priorities, 10, The development of organizational, re- gional and national advocacy, and com- munications and marketing strategies to enhance consumer and healthcare pro- vider awareness of hospice palliative care (cg. Living Lessons, a national commu- nications strategy that was developed from the 1995 Principles of Practice; see hip: / /wwwlivingessons.org/, last up- dated 15 May 2002.) Next Developmental Steps ‘Once the model has been used by many or- ganizations to develop standards of practice specific to their community and circumstances,Vol 24 No. 2 August 2002 Desred practice Curent practice Poor practice Fig. 6, Projected improvement in practice, it will be possible to collate each of their stan- dards of practice to see how onganizations are using the model, and how effective itis at guid- ing patient and family care. Through cumulae tive iterations of its application, testing, and ze- finement, it will eventually be possible to ‘establish norms of practice that are more spe- cific, evidence-based, and reflective of commu- nity practice. As nationally accepted, evidence-based pre- ferred practice guidelines and data collection/ documentation guidelines become available, they can also be integrated into the model to. cenbance its usefulness. Conclusions The Model to Guide Patient and Family Care is the first model to presenta comprehen- sive approach to guide clinical hospice pallia- tive care using nationally accepted principles and norms of practice. It has multiple uses across all hospice palliative care activities. Al though the model was developed for Canada, with minor modifications it will have broad in- ternational application. Readers are also invited to review and down- load the companion Model to Guide Organiza- ‘A Model to Guide Patient and Family Gare m3 tional Development and Function that is avail. able in English at hup://www.cpca.nct and in French at hup:/ /wew acsp.net. Acknowledgments ‘The authors would like to thank everyone ‘who participated in and supported the devel ‘opment of The Model to Guide Patient and Family Gate, including the thousands of stake- hholders who assisted with and participated in the consensusbuilding process; the members of the Board and Standards Committee of CHPCA; the members of the provincial hos- pice palliative care associations and their pro- ¥incial supporters; those who were advisors, ed- itors, reviewers, and translators of the drafts and the staff of the CHPCA National Office in Ottawa. Particular thanks are due to those who sup- ported the project financially, including The Population Health Fund and the Canadian Breast Cancer Initiative, Health Canada, Ot tara, Ontario, who supported the national consensusbuilding process; The Faculty Scholar Program, Project on Death in Amer- ica, New York, New York, and San Diego Hos pice, San Diego, California, who supported the activities of Frank D. Ferris; and Les Morgan, Growth House Inc., San Francisco, California, who contributed the Internetbased data col lection tool. ‘Thanks are also due to Tim Chisser, San Di- 80 Hospice, who designed the graphics. Appendix: The Model to Guide Patient and Family Care Definition of Hospice Palliative Care ‘The brief definition is Hospice palliative care aims to relieve suffering, and improve the quality of living and dying. ‘This can be further elaborated to inchude: Hospice paliatve care strives ‘0 help patients and families: * address physical, psychological. so- cial, spiritual and. practical issues, and their associated expectations, needs, hopes and featsuy Strategic planning Operations (process of providing care) Poreach cxsetial step Foreach base ste: For each iver Fens etal Table 1 Local Application to Guide Planning and Operations Vol. 24 Na. 2 August 2002 ‘National Modet Caitng prince Scoaetfeare™ Principles of practice Norms of practice Beataailble evidence vbased ‘documentation biden * prepare for and manage selfdleter- mined life closure and the dying process ‘+ cope with loss and grief during the illness and bereavement Hospice palliative care aims to: * treat all active issues + prevent new issues from occurring ‘+ promote opportunities for meaning. ful and valuable experiences, per sonal and spiritual growth, and self actualization Hospice paliative careis appropriate for any par tient and/or family living with, or at risk of de- veloping, alifechreatening illness due to any di agnosis, with any prognosis, regardless of age, and at any time they have unmet expectations and/or needs, and are prepared to accept care. Hospice palliative care way complement and enhance disease-modifying therapy or it may ‘become the total focus of care. Hospice palliative cares most effectively deliv. ered by an interdisciplinary team of healthcare providers who are both knowledgeable and skilled in all aspects of the caring process re- lated to their discipline of practice. “Typical Local Applicnion ‘Use with minimal or no modification, May choose a ‘ferent “term to describe the care" Oat wil have ‘greater community aecepance ‘Use with misinal or no modifistion Use with minimal or no medication ‘Use with minimal or mo modiieation ‘Use to define which issues wl be addressed, and what ‘ate wil be provided by Uh organiation, snd wich ‘Senices/isues willbe prowded by partner organizations (Go that no patient/family utes go unaddressed) ‘Use with minal or no modication Use to develop own, more specific standards of practice Use to develop own lense apecii standards of practice ‘and place them i the gd created bythe mare of care Use to develop own iaeapecii polices and Drocedures, specify the diferences during each phate of ‘he derapeatic relationship; then place hem in the grid ‘reated bythe square of care ‘Use to develop own Isuespecine standards for data ‘ollection/documentaon; then place them inthe grid ‘created bythe square of care ‘The Role of Hospice Palliative Care During Mlness and Bereavement. Although hospice palliative care has grown out of and includes care for pa tients at the end of life, today it should be avail able to patients and families throughout the ill- ness and bereavement experiences (see Figure ‘7. The top line represents the total ‘quantity’ of concurrent therapies. The dashed line dis Linguishes therapies intended to modify dis ‘ease from therapies intended to relieve suffer ing and/or improve quality of life (labeled hospice palliative care). The lines are straight for simplicity. In reality, the total ‘quantity’ of therapy and the mix of concurrent therapies will fluctuate based on the patient’s and fam- ily’ issues, their goals for care and treatment priorities. At times, there may not be any ther apy in use at all. Some aspects of hospice pal tive care may also be applicable to patients and families at risk of developing an illness. Definitions of Other Commonty Used Terms ‘Another 60 commonly used terms were de- fined during the consensusbuilding process. These can be found in the Appendix of the Model to Guide Hospice Palliative Care whichVol 24 No. 2 August 2002 Focus ofcare ‘Therapy to modify disease ‘A Model to Guide Patent and Family Core Hospice Palliative Care ‘Therapy to roleve suffering {andlor Improve quality of te us Prosentation Pationte Diagnosis Death ' Miness | Bereavement | pcae ‘hve Advanced | i Uiedtveatetng | Fig. 7. The role of hospice palliative care du ‘ean be reviewed and downloaded in English at hhup://www.cpca.net and in French at http:// wwwacsp.net. Values All hospice palliative care activities recog- nize and support the following values: V1. The intrinsic value of each person as an autonomous and unique individual ‘V2. The value of life, the natural process of death, and the fact that both provide op- portunities for personal growth and self 2etualization, V3. The need to address patients’ and famni- lies suffering, expectations, needs, hopes, and fears, ‘V4, Care is only provided when the patient and/or family is prepared to accept it Vo. Care is guided by quality of life as de- fined by the individual. V6. Caregivers enter into a therapeutic rela- tionship with patients and families based on dignity and integrity, ‘Vi. A.unified response to suffering strength ens communities. Guiding Principles The following principles guide all aspects of hospice palliative care: GPI. Patient/Family Focused. As patients are typically par ofa family, when care ope, is provided the patient and family are tweated as a unit. All aspects of care are provided in a manner that is sensitive to the patient's and family's personal, cultural, and religious values, beliefs, and practices, their developmental state and preparedness to deal with the dying process. High Quality. All hospice palliative care activities are guided by: + The ethical principles of autonomy, ‘Toeneficence, nonmaleficence, justice, ‘wuthtelling, and confidentiality” Standards of practice that are based ‘on nationally accepted principles and norms of practice, and stan- dards of professional conduct for cach discipline Policies and procedures that are based on the best available evidence ‘or opinion-based preferred practice guidelines, *+ Data collection/documentation guide- lines that are based on validated ‘measurement tools, . Safe and Effective. All hospice palliae tive care activities are conducted in a manner that: * Is collaborative * Ensures confidentiality and privacy « Is without coercion, discrimination, harassment or prejudice6 ops, ops, ore, GP7, Ps, Pe. Faris tal + Ensures safety and security for all participants + Ensures continuity and accountability * Aims to minimize unnecessary du- plication and repetition. ‘+ Complies with laws, regulations and policies in effect within the jurisdic tion, host, and hospice palliative ‘care organizations. Accessible. All patients and families Ihave equal access to hospice palliative care services: + Wherever they live * Athome, or within a reasonable dis tance from their home Ina timely manner (Timelines will be defined by each organization based on its activities.) Adequately Resourced. The financial, human, information, physical, and community resources are sufficient to sustain the organization's activities, and its strategic and business plans. Sufficient resources are allocated to each of the onganization's activities. Collaborative, Each community's needs for hospice palliative care are as- sessed and addrested through the col laborative efforts of available organiza. tions and services in partnership. KnowledgeBased. Ongoing educa tion ofall patients, families, caregivers, staf, and stakeholders is integral to the provision and advancement of ‘quality hospice palliative care. AdvocacyBased. Regular interaction ‘with legislators, regulators, policy make xs, healthcare funders, other hospice palliative care providers, professional societies and associations, and the pub- lic is essential (0 increase awareness about, and develop, hospice palliative care activities and the resources that support ther, All advocacy is based on the Canadian Hospice Palliative Care Association's model to guide hospice palliative car. Research-Based. The development, dissemination, and integration of new knowledge are critical to the advance- ment of quality hospice palliative Vol. 24 No. 2 August 2002 care. Where possible, all activities are based on the best available evidence, Alll research protocols comply with legislation and regulations governing research and the involvement of hu- ‘man subjects in effect within the juris diction, Foundational Concepts Hospice palliative care is also based on effec- tive communication, effective group function, and the ability to promote and manage change. FCI, Effective Communication. To communicate effectively, hospice palliative caregivers must: FCL1, Share a common language and un- derstanding of the definitions of the terms they use during the process of providing care. Another 59 terms were defined during the consensus- building process (see the Appendix of the complete model at hup:// wow.epeamnet [in English] or hetp:// ‘ww.acsp.net [in French]), FCL2. Use a standard protocol to communi- ‘ate, and to listen and respond to the reactions that information creates. FOLS, Collect data that documents the pa- Sent’s and family’s starus, and pro- vides a record of each therapeutic en- counter. FOL4, Educate patients, families and care- givers using strategies that are built fon the principles of adult educa von—that is, education should be practical, participatory, considerate of the learners’ multiple demands, and include strategies to develop. the leamers’ attitudes, knowledge, skills and behavior. PCR. Effecive Growp Function. All activities re lated to hospice palliative care revolve around multiple groups that have specific purposes ‘and tasks. Each group is subject to all of the dy- namics of group formation and function. Groups in hospice palliative care include: ** The patient and family * The careteam ‘+ Regional teams of formal caregiversVol 24 No. 2 August 2002 ‘© The organization’s management team(s), committees and work groups C3, Abily to Facilitate Change. As hospice pal- liative care aims to help patients/families man- age the challenges and opportunities they face during their changing illness and bereavement experiences, caregivers must be skilled at maxi mizing openness and adaptability in the attic tudes, knowledge, skills and behaviours of ‘everyone involved in the therapeutic relationship. ‘They must also have specific sills to assist pa- tients and families through the transitions they experience during iliiess and bereavement. Principles and Norms of Practice For each of the essential and basic steps in the process of providing care, the CHPCA has developed principles and norms of practice. 1. Assessment: Prindples LLL. Assessment guides clinicians to identify and understand each of the issues, risks, and opportunities related to the patient's and family’s illness and be- Teavement experiences, and their asso- ‘Gated manifestations and predicamenss 1.2, Reliable information that is relevant to the patient’s and family’s situation is ‘gathered from anyone who is able and willing to provide it (e.g., patient, fam- ily, friends, formal and informal care- ‘givers—past and present). 1.3, The absence of commonly occurring is- sues is as important as their presence. P14, Where possible, history-aking and ex- amination techniques and tools are ev- idenco-based. P15. Assessment is repeated at intervals suf- ficient to ensure that adequate infor- ‘mation is available to guide changes to decision-making and care planning. 1. Assessment: Norms of Practice. NLL. Screening questions are used to assess all domains of care and identify all ac- tive (unresolved or new) or potential issues and opportunities of impor. tance to the patient, family and care- givers. A Mode 0 Guide Potent and Family Care 7 NLB. Historptaking gathers deteiled infor: mation about Each identified issue or opportunity (including the disease). This includes: # Status * Potential cause * Associated expectations, needs, hopes and fears + Perceived benefits and burdens of any previous therapeutic interven- tions * Difficulties adhering to therapeutic regimens + Adverse events «Allergies N13. Further information about the status of each identified isue i gathered us- ing a variety of examination tech- niques, including astessment scales, physical examination, laboratory test ing, radiological studies, and ives sational procedures. NIA. Only examination techniques with the potential to provide beneficial infor- mation without undue risk or burden are uted. 2. Information Sharing: Principles. P2.1. It is a patient's and family’s right to be informed about hospice palliative care and what it can offer throughout their illness and bereavement exper- P22. Itis the patient’ right to choose to be informed about his/her disease, its meaning and implications, available therapeutic options, and their poten- tial benefits, risks, and burdens. 2.3, Respecting the patient’s right to confi- dentiality: * Families are entitled to information ‘about the patient’ disease or condi- tion, available therapeutic options, and their potential benefits, risks, and burdens * Caregivers are entitled to the infor- ‘mation they need to provide care ef fectively P24, All communication respects the limits ‘of confidentiality set by the patient.us Rens etal 2. Information Sharing: Norms of Practice. N2.1. Limits of confidentiality are defined by the patient before information is shared. N22, What the patient and family already know, what they would like to know, and whether they are ready to listen is ‘established before sharing information. N23, Information that is as accurate as pos- sible is shared: + In a timely manner, as it becomes available * Only in settings where privacy can be ensured, ‘In a language and manner under standable and acceptable to the pa- tient and family N24, When language is a barrier, transla tors who understand the medical concepts and terminology facilitate information sharing. N25, Emotional and physical reactions to information are assessed regularly and responded to effectively N2.6. The patient’s and fa standing of the shared information, and its implications, is assessed regu- larly. N27. The paticnt’s and family's desire for additional information is assessed regularly 3. Decision-Making: Principles. PB.1. Itis the patient’s right to: + Make informed decisions and de- termine goals for care * Establish priorities for present and future care from the available ap- propriate therapeutic options * Change her/his mind at any time 8.2. The patient: ‘+ Must provide voluntary consent to any therapy before itis initiated * May request to ave any therapy withdrawn at any time ‘+ May designate an alternate (proxy) decision-maker, and specify when that person will act on his/her be- Vol. 24 No, 2 August 2002 hralf (according to the laws in effect in the jurisdiction) P8.3. All decision-making processes respect the limits of confidentiality defined by the patient. P34, Family member are included in decsion- ‘making processes whenever posible 3. Decision-Making: Norms of Practice. SAL The patient’s decision-making capac- ity is assessed regularly. N32. The patient's and family’s goals for care are assessed regularly. N33. Requests to withhold or withdraw therapies, requests to initiate thera- peutic interventions that appear to have no potential to benefit the pa- tient and family, and requests co has- ten death (1e,, euthanasia or assisted suicide), and the factors underlying those requests, are discussed openly. N34, The patient and family prioritize the importance of each of the identified N35, The patient is offered therapeutic ‘options to modify the disease, relieve suffering and improve the quality of life that: ++ Are appropriate for the disease stax tus and prognosis, goals for care, prioritized issues and the pre- sumed etiologies of those issues + Have the potential for benefit * Are not associated with unaccept- able risk or burden, N86. The patient and family are assisted to select treatment priorities from the options offered, and consent to tcatmentis obtained. N37, All patients are asked to designate a proxy decision-maker and specify under what circumstances that per son should act. NSS, All patients are asked to provide ade vance directives to guide the proxy decision-maker should the patient be- ‘come incapable of making decisions. N8.9, When a patient lacks capacity to make decisions, approaches to decision-Vol. 24 No. 2 August 2002 making are guided by surrogate deci- sion-making legislation and regula. tions in effect within the jurisdiction, 'NS.10. A process is used to resolve conflict that is acceptable to the patient, fam- ily and caregivers. NS.11, Therapies, therapeutic options, and patient and family choices are re- viewed regularly. 4. Gare Planning: Principles. P41. Caregivers respect the patient’s choices to have, withhold, or withdraw thera: peutic interventions. P42. Care planning takes into account the patient's and family’s culture, person- alities, emotional status, coping strate- gies, developmental state, and preex isting psychiatric diagnoses. 45. Fach plan of care is customized, flexi- bie and aims to: ‘* Support the importance, meaning and roles of each person who is in- volved with the patient and family * Support the patient's and family's desire for control, independence, timacy, and their sense of dignisy for as long as possible * Ensure continuity of the plan of care, information, and caregivers 4. Care Planning: Norms of Practice. 4.1, Patients and families are assisted to select an appropriate setting of care. N42, The plan of care is negotiated and de- veloped with the patient, family and careteam coordinators. N43, The plan of care includes strategies to: ‘+ Address each of the patient’s and family’s issues or opportunities, ex: peciations, necds, hopes and fears, ‘and deliver their chosen therapies * Care for dependents (e., children, elders, pets) * Provide backup coverage if care. givers are unable to fill their role in the plan of care + Provide caregiver respite + Cope with emergencies + Plan for discharge A Model o Guide Patent and Fanily Care ug + Provide bereavement care N44, The plan and setting of care are re- viewed regulary by the careteam and/or the organization’s regional team and adjusted to compensate for changes in the patient's and familys status and choices. 5. Care Delivery: Priniples, P5.1. Cares provided by a specific interdis- Cplinary careteam that forms to care for each patient/family unit P5.2. Each careteam has the leadership it needs to facilitate careteam forma tion and function, and coordinate care planning and delivery. P53. Caregivers have the resources they need to provide care, P54, Expert consultation is provided in a timely manner whenever itis needed. P5.5, All aspects of care are prioritized and delivered in a safe and timely man- ner, including: # Requests for initial evaluation and ongoing followup * The implementation of decisions * The delivery of chosen therapies, equipment and supplies P5.6. Acute issues are attended to within hours, 5.7. Ungent/emergent situations are re- sponded to rapa. P5.8, All care is provided in a mannet that + Is respeetful of the patient and family and their choices + Is understandable and acceptable to them + Maintains their sense of dignity + Maintains their privacy + Provides ample opportunity for in- timacy P5,9, The patient can be as active in the de- livery of care as they desire. P5.10. There is continuity: + OF the plan of care and informa- tion across all settings of care, and among all caregivers and organiza- tions who are involved in. the careteam,120 Penis etal + Of the caregivers providing care P5.11. For aspects of care not provided by the hospice palliative care organiza tion, partnerships are created with ‘other healthcare providers in order to assist patients and families with all the issues they face, 5. Care Delivery: Norms of Practice, NB.1. Each cateteam includes (if the pa- tient wishes them to be involved): + The patientand family * The patient’s primary care and specialist providers, Formal caregivers with the skills needed to implement the plan of ceare and deliver the chosen thera- pies (Formal caregivers on the team ‘may include, but are not limited to: chaplains, dieticians, nurses, phar maciss, physicians, psychologist, social workers, speech pathologiss, integrative therapists, occupational therapists, physiotherapists, recre- ational therapists, volunteers.) * Informal caregivers who may be family or friends * Community resources acceptable to the patient and family (eg., spiritual advisors) NB. A designated formal caregiver leads, coordinates, and facilitates the ‘careteam's activities and function, ‘An informal caregiver is designated to assist the careteam leader. N5.4, Family and friends are educated about their potential role and sup- ported in their decisionmaking to become informal caregivers. N56. Informal caregivers receive the orie entation, ongoing education, and training they need to be competent and confident to provide care. 5.6, Informal caregivers are educated ‘about the appropriate use of medica- tions, therapies, equipment and sup- plies. N5.7. Informational resources designed for the informal caregivers support the education they receive. NBs, NB. NB.10, NB.LL. NB.12, NB.13. NB.14. NBS. Vol 24No. 2 August 2002 Informal caregivers have the physi- cal, psychological, and spiritual sup- portand assistance they need to pro- Vide effective care and ensure their wellbeing. ‘Consukants and/or facilitators are en- gaged as needed to assist the careteam ‘with ethical issues, specialized invest- gations, therapeutic interventions or activities (eg, rites and rituals), The setting of care is maintained so that it is safe, comforting, and pro- vides ample opportunity for privacy and intimacy. (Where possible, set- tings of care are homelike, with ac- cess to the outdoors.) Essential services are available 24 hours per day, 7 days per week. ‘The patient, the family, and their network of extended family, friends, and community are: ‘* Educated about the appropriate use of medications, therapies, equipment and supplies so they will understand what is happening and why + Supported so they will be able to maintain their own well-being, adapt to the ongoing changes that are taking place, and support each other All therapeutic interventions are de- livered in a safe and timely manner that: Is consistent with the organiza. tion's standards of practice and policies and procedures ‘+ Optimizes their potential for benefit ‘¢ Minimizes the potential for medi cation interactions, adverse ef. fect, or burden. ‘Is consistent with manufacturer’s/ supplier's instructions ‘Is acceptable to the patient and family No medications are mixed if their compatibility is not known. All medications, equipment and sup- plies are stored and maintained so that they are stable and safe for use,Vol. 24 No, 2 August 2002 N5.16. All potentially hazardous materials, including toxic or controlled medi- cations, biological substances and equipment or supplies (eg., sharps), are stored, handled, and disposed of safely N5.17. No medications or supplies are used that are damaged or outdated. NB.18. No equipment is used that isin need of repair, or is outdated. 1NB.19. An infection control program guides all clinical activities. 'N5.20, Any errors in therapy delivery are re- ported to supervisors immediately N5.21. Appropriate antidotes are started as quickly as possible. Any error is discussed openly with the patient or surrogate decision- ‘maker and/or relevant family. 5.23. Errors are documented appropri- ately. 5.24, All approaches to delivering care are reviewed regularly and adjusted to compensate for changes in the pa- tient’s and family’s status and choices. 6. Confirmation: Principles. P6.1. Overall understanding, satisfaction, sense of complexity, level of stress, ‘concerns, questions, and desire for ad- ditional information are assessed dur- 1g each therapeutic encounter. 6. Confirmation: Norms of Practice. 6.1. By the end of each therapeutic en- counter, the formal caregiver assesses and reinforces the patient's, family's, and informal caregiver’s understand- ing of: ‘+ The situation + The plan of care © The appropriate use of mediica- tions, therapies, equipment, and supplies N6.2. By the end of each therapeutic en- ‘counter, the formal caregiver assesses the patient's, family’s, and informal and formal caregivers’ A Mode to Guide Patent and Fasmily Care iat + Satisfaction with the process of pro- viding care and their overall situa tion * Perception of the complexity of the situation + Perception of the level of stress '* Conceims, questions, and desire for additional information * Ability to provide and participate in the plan of care References 1. Feld Mf, Case CK (ed). Insite of Medicine. Approaching death improving ere at the endo. ‘Washington, DG National Academy Pres, 1997 2, Saunders C. A. personal therapeutic journey sii 196,318.1608-601. 3. Polit DF, Hungler BP (eds). Nursing research, Philadelphia: JB Lippincott, 1991:356-7. 4. The Working Group on Special Services in Hos- tals. Palliative care services in hospitals, guide- ies. Ouawa, Ontatio: National Health and Wel fare, 1981 5, Subcommittee on Institutional Program Guide: Tines. Palliative care service guidelines, Outawa, On- ‘ario: Health and Welfare Canada, 1989. 6. Acute care and large community and teaching hospitals. Ouawa, Ontario: Canadian Council on Health Facilites Accreditation, 1992, PCP-I-PCP-20, 17. Standards for acute care organizations, 2 client ‘centred approach; and, Standards for cancer treat- ment centres, a dient’ centred approach. Otawa, Ontario: Canadian Council on Health Services Act creditation, 1995 8, Department of Health and Fitness. Guidelines {or the establishment of palliative care services. Hali- fax, Nova Scotia: Nova Scotia Department of Health and Fitness, 1988. 8, Joint Commission on Accreditation of Hospi- tale! Hospice selfassessmont and survey guide, Chi ‘cago, HL: Joint Commission on Accreditation of Hos- pitals, 1988. 10. Joint Commission on Accreditation of Hospital. Hospice standards manual. Chicago, Hlinois: Joint Commission on Accreditation of Hospitals, 1986. IL Joint Commission on Accreditation of Hospi tals: Monitoring and evaluation of the quality and appropriateness of cate: an example for a hospice program, Chicago, IL: Joint Commission on Accred- itation of Hospitals, 1986, 12 Joint Commission on Accreditation of Hospi: tals) Monitoring and evaluation of the quality and appropriateness of care: a home care example. Chi: cago, IL: Joint Commission on Accreditation of Healthcare Organizations, 1988.122 Fenis etal 18, Joint Commission on Accreditation of Hospi tals. Standards for the accreditation of home care Chicago, TL: Joint Commission on Accreditation of Healthcare Organizations, 1988, 14, Miller SC. A medical record handbook for hos- ice programs. Assuring high quality care through Nigh quality documentation, Ching Record Astociation, 1984. 15, The National Hospice Organization. Standards ‘of a hospice program of care. Arlington: The Na- tional Hospice Organization, 1993. 16, Harper R, Ward AWM, Westlake L, Williams BT. So Birchester needs hospice ...a guide for those concerned with the esublshment and operation of hospices. Sheffield, England: Department of Com ‘munity Medicine, University of Suffield, 1909. 1, Trent Hospice Audit Group, Palliative care core standards, Derby, England: Tent Hospice Audit Group, 1992. 18, Higginson 1. Quality, standards, organisational and clinical audit for hospice and paliauve eae ser vices, London, England: National Council for Hos pice and Specialist Palliative Care Services, 1992 19. The Roya Collegeof Nursing Palliative Nucting Group and Hospice Nurse Manager’ Forum. Scant dards of care for paliaive nursing. London, En- gland: The Royal Colege of Nursing, 1903 20, international Work Group on Death, Dying and Bereavement, Assumptions and principles under- ing standards for terminal eave, Am } Nursing 1979, 396-207. 21, Peychoiogical Work Group of the International Work Group on Death, Dying and Bereavement. A statement of assumptions and principles concerning prychologicl care of dying persons and their fant lies. Paliaive Care 1993:8(8)20-52, 22, Corr GA, Morgan JD, Wass FI. tatements about death, dying and bereavement. London, Ontaro: International Work Group on Death, Dying and Be- reavement, 1994 2, Van Bomme! H, Palinive care standards—who decides? Pain Manage Newsleter 19914(3):25, 34, Latimer Bf, Davison HR. Palliative care: princ- ples nd practice. CMA 1998,148(6):988-004 25. Nixon M. Guidelines for medical care in long- term care faites. Can Fan Phye 1904401526. 188, 26, Clemenhagen G. Patent suisfaction: the power ofan untapped resource, CMAJ 1904,150(L1) 1771 in. 27, Higginson, Clinical auc in paliave car. New on: Radclife Medial Pres, 1983, 38, Finlay I. Sewing standards for palinive care. J Royal Soc Med 1904;87:179-181, 29, Fersis FD, Gammings I Palistive care: towards a Consensus standardized principles of practee, Ot Vol. 24 Na. 2 August 2002 ‘awa, ON: Canadian Palliative Care Association 1088, 80. Ferris FD, Cummings I. Les soins pallitifs: Vers ‘un consensus pour une normalisation de la pr \ique. Ottawa, ON: Association canadienne de soins palliatif, 1995. 31, Ferris FD, Balfour HM, Adams D, Hardwick M. How close are we to consensus? Ottawa, ON: Cana. «dian Palliative Care Association, 1998, 82, Lamontagne G, Farley J, Girard S, etal. Le Rap- port final. Montréal, QC: Association québécoise de Soins palitits, 2000. Publié dans Te Bulletin “spé- ial” de I'Association québécoise de soins palliaifs, emer 2001. 138. Hospice Astociation of Ontario. Client service standards for volunteer hospice visiting service. Tor ‘onto, ON: Hospice Association of Ontario, 1998, 34, The Caring Community. A field book for hospice palliative care services. Vancouver, BC: British Cox Jumbia Hospice and Palliative Gare Association, 1999, 85. American Association of Colleges of Nursing. Competencies and curricular guidelines for end-of life nursing care. Washington, DC: American Associ- ation of Colleges of Nursing, 1997. 36. AGS Bthics Committee. Postion statement: the ‘are of dying patients. New York: The American Ge- Tiatrics Society, 1998, 37. Task Force on Cancer Care at the End of Lif, ‘Cancer care during the last phases of life, J Glin On- co! 1998;16:1986-1996, 88, Children’s Hospice International, Standards for hospice care for children. Alexandria, VA: Chile ‘dren's Hospice International (CHI), 1998, 59. The Grace Project. End-oflife care standards of practice for inmates in correctional settings, Alexan- dria, VA: The Grace Project, Volunteers of America, 200, 40. Joint Commission on the Accreditation of Healthcare Organizations. Pain standards. Oake brook Terrace, I: Joint Commission on the Accred- itation of Healthcare Organizations, 2001 41, Phillips DE, Sabatino C, Long KN. Compen- ddiuam of guidetines and position statements. Wash- ton, DC: Last Acts, 2001, 42. Last Act Palliative Care Task Farce. Precepts of palliative care. Washington, DC: Last Acts, 1997, 48. Cassel CK, Foley KM. Principles for care of pa- lients at the end of life: an emerging consensus ‘among the specialties of medicine. New York: Mi bank Memorial Fund, 1999, 44. Standards and Accreditation Committees. Stan- dards of practice for hospice programs. Alexandria, ‘VA: National Hospice and Palliative Care Organiza tion, 2000, 45. The Standards and Quality Committee. Stan dards for palliative care provision, Deakin, Australi Palliative Care Australia, 1999.Vol, 24 No, 2 August 2602 48, Minisuy of Health, The New Zealand palliative ‘are strategy. Wellington, NZ: Ministry of Health, 2001. 47. Kervs ED, Balfour HM, Farle J, et al. 2001 pro- posed norms of practice for hospice palliative care. Ot {awa, ON: Canadian Palliative Care Association, 2001, 48. Forvis FD, Balfour HM, Farley J, etal. Propost- tion de normes de pratique en soins palliaifs— 2001. Ottawa, ON: Association canadienne de soins palliadis, 2001. 49, Ferris FD, Balfour HM, Bowen K, et al. A model to guide hospice palliative care. Ottawa, ON: Cana- dian Hospice Palliative Care Association, 2002. 50. Ferris FD, Balfour HM, Bowen K, etal. Modele ‘de guide des soins palliatii, Ottawa (Ontario): L'A® sociation canadienne de soins palllaifs, 2002. 1. Krisfanson IJ. The family as the unit of weat- ‘ment. In; Portenoy R, Bruera E, eds. Topics in palliative ‘are. New York: Oxford University Press, 1997:245-261. 52. Emanuel LL, Alpert HR, Baldwin DG, Emanuel EJ. What terminally ill patients care about: toward a validated construct of patients perspectives. J Pallia- tive Med 2000;4(8):419-481. 58. Emanuel FJ, Emanuel LL. The promise of a good death, Lancet 1098;351:21-29. ‘A Model to Guide Patient and Family Cort 13 54, Gertele M, EdgmamLevitan §, Daley J, Del: banco TL, eds. Through the patient’ eyes: under standing and promoting patient-centered care. San Francisco: JosspBass Publishers, 1993. 55, Singer PA, Martin DK, Kelner M. Quality end-of- life care: patients’ perspectives. JAMA, 1999,281 (2): 163-168, 456. Steinhauser KE, Clipp EC, McNeilly M, etal. Ia search ofa good death: observations of paienis, files and providers, Ann Iniem Med 2000;152(10) 825-832 57. Steinhauser KE, Christakis NA, Clipp EC, et al. actors considered important at the end of life by patients family, physicians, and other eare provid- cers. JAMA 3000;384(19) 2475-2489. 58, Steinhauser KE, Christakis NA, Clipp EC, et al Preparing for the end of life: preferences of par tients families, physicians, and other care providers. J Pain Symptom Manage 2001;22(8) 727-787. 59, Bioethics for Clinicians, Canadian Medical Aso dation Journal. See hutp://wms.cma.ca/emaj/se- res/bicethic.him. Last updated 15 May 2002. 00, Baker RB, Caplan AL, Emanuel LL, Latham SR. ‘The American medical ethics revolution. Baltimore, MD: The Johns Hopkins University Press, 1900.