End-of-Life Care BPG_0 (7) PDF Best Practice Guidelines 2011

Clinical Best Practice Guidelines SEPTEMBER 2011 End-of-life Care During the Last Days and Hours BEST PRACTICE GUIDELINES w w w. r n a o. o r g 1  End-of-life Care During the Last Days and Hours Disclaimer These guidelines are not bindin...

Clinical Best Practice Guidelines SEPTEMBER 2011 End-of-life Care During the Last Days and Hours BEST PRACTICE GUIDELINES w w w. r n a o. o r g 1  End-of-life Care During the Last Days and Hours Disclaimer These guidelines are not binding for nurses or the organizations that employ them. The use of these guidelines should be flexible, and based on individual needs and local circumstances. They neither constitute a liability nor discharge from liability. While every effort has been made to ensure the accuracy of the contents at the time of publication, neither the authors nor the Registered Nurses’ Association of Ontario give any guarantee as to the accuracy of the information contained in them, nor accept any liability, with respect to loss, damage, injury or expense arising from any such errors or omissions in the contents of this work. Copyright With the exception of those portions of this document for which a specific prohibition or limitation against copying appears, the balance of this document may be produced, reproduced and published in its entirety, without modification, in any form, including in electronic form, for educational or non-commercial purposes. Should any adaptation of the material be required for any reason, written permission must be obtained from the Registered Nurses’ Association of Ontario. The appropriate credit or citation must appear on all copied materials as follows: Registered Nurses’ Association of Ontario. (2011). End-of-life Care During the Last Days and Hours. Toronto, ON: Registered Nurses’ Association of Ontario. This program is funded by the Ontario Ministry of Health and Long-Term Care. Contact Information Registered Nurses’ Association of Ontario 158 Pearl Street, Toronto, Ontario M5H 1L3 Website: www.rnao.org/bestpractices 2 R E G I S T E R E D N U R S E S ’ A S S O C I AT I O N O F O N TA R I O  End-of-life Care During the Last Days and Hours Greetings from Doris Grinspun, Executive Director Registered Nurses’ Association of Ontario It is with great excitement that the Registered Nurses’ Association of Ontario (RNAO) presents this guideline, End-of- life Care During the Last Days and Hours, to the health-care community. Evidence-based practice supports excellence in service that nurses are committed to delivering in day-to-day practice. The RNAO is therefore delighted to provide this key resource to you. The RNAO offers its heartfelt thanks to the many individuals and institutions who make our vision for Nursing Best Practice Guidelines (BPGs) a reality: The government of Ontario for recognizing our ability to lead the program, and for providing multi-year funding; Irmajean Bajnok, Director, RNAO International Affairs and Best Practice Guidelines (IABPG) Programs and Centre for Profes- sional Nursing Excellence, for her expertise and leadership in advancing the production of the BPGs; each and every Team Leader involved, and for this BPG in particular – Christine McPherson – for her superb stewardship, commitment and expertise. Thanks also to Frederick Go, RNAO’s IABPG Program Manager, for his intense work to see that this BPG moved from concept to reality. Special thanks are also extended to the BPG Panel – we respect and value your expertise and volunteer work. To all, we could not have done this without you! The nursing community, with its commitment to and passion for excellence in nursing care, has provided the knowledge and countless hours essential to the development, implementation, evaluation and revision of each guideline. Employers have responded enthusiastically by nominating best practice champions, implementing and evaluating the guide- lines and working toward a culture of evidence-based practice. Successful uptake of these guidelines requires a concerted effort from nurse clinicians and their health-care colleagues from other disciplines, and from nurse educators in academic and practice settings and employers. After lodging these guidelines into their minds and hearts, knowledgeable and skillful nurses and nursing students need healthy and supportive work environments to help bring these guidelines into practice actions. We ask that you share this guideline with members of your interprofessional team, as there is much to learn from one another. Together, we can ensure that the public receives the best possible care each and every time they come in contact with us. Let’s make them the real winners in this important effort! Doris Grinspun, RN, MSN, PhD, LLD(Hon), O.ONT. Executive Director Registered Nurses Association of Ontario BEST PRACTICE GUIDELINES w w w. r n a o. o r g 1  End-of-life Care During the Last Days and Hours Table of Contents How to use this Document.................................................................................................................................................4 Summary of Recommendations.........................................................................................................................................5 Interpretation of Evidence..................................................................................................................................................9 BACKGROUND Development Panel..........................................................................................................................................................10 Stakeholder Acknowledgements......................................................................................................................................11 Introduction.....................................................................................................................................................................13 Background Context................................................................................................................................................13 Guiding Principles....................................................................................................................................................17 Purpose....................................................................................................................................................................18 Scope.......................................................................................................................................................................18 Section 1: Practice Recommendations for Assessment at the End of Life.........................................................................20 Section 2: Practice Recommendations for Decision Support at the End of Life.................................................................32 Section 3: Practice Recommendations for Care and Management at the End of Life.......................................................42 R E C O M M E N D AT I O N S Section 4: Education Recommendations..........................................................................................................................49 Section 5: Organization and Policy Recommendations.....................................................................................................55 Research Gaps and Future Implications...........................................................................................................................60 Evaluation/Monitoring of Guideline.................................................................................................................................62 Implementation Strategies...............................................................................................................................................65 Process for Update and Review.......................................................................................................................................66 2 R E G I S T E R E D N U R S E S ’ A S S O C I AT I O N O F O N TA R I O  End-of-life Care During the Last Days and Hours REFERENCES References List.................................................................................................................................................................67 Bibliography.....................................................................................................................................................................79 Appendix A: Glossary of Terms.........................................................................................................................................89 Appendix B: Guideline Development Process...................................................................................................................94 Appendix C: Process for Systematic Review/Search Strategy...........................................................................................95 Appendix D: Tools for Estimating Length of Survival for Individuals at the End of Life.....................................................99 Appendix E: Clinical Indicators of Decline......................................................................................................................103 Appendix F: Edmonton Symptom Assessment System (revised version).........................................................................106 APPENDICES Appendix G: Frommelt Attitude Toward Care of the Dying Scale....................................................................................108 Appendix H: Tips for Conducting a Family Conference...................................................................................................109 Appendix I: Canadian Hospice Palliative Care Association Square of Care....................................................................111 Appendix J: Strategies for Helping Individuals Engage in Decision-making at the End of Life.......................................112 Appendix K: Canadian Hospice Palliative Care Association Square of Care and Organization.......................................114 Appendix L: Tools and Resources...................................................................................................................................116 Appendix M: Description of the Toolkit..........................................................................................................................118 BEST PRACTICE GUIDELINES w w w. r n a o. o r g 3  End-of-life Care During the Last Days and Hours How To Use this Document This nursing best practice guideline is a comprehensive document, which provides resources necessary for the support of BACKGROUND evidence-based nursing practice. The document must be reviewed and applied, based on the specific needs of the organization or practice setting/environment, as well as the needs and wishes of the client. This guideline should not be applied in a “cookbook” fashion, but rather as a tool to enhance decision-making in the provision of individualized care. In addition, the guideline provides an overview of appropriate structures and supports necessary for the provision of best possible care. Nurses, other health-care professionals and administrators who lead and facilitate practice changes will find this document invaluable for the development of policies, procedures, protocols, educational programs, and assessment and documentation tools. It is recommended that this nursing best practice guideline be used as a resource tool. Nurses providing direct care will benefit from reviewing the recommendations, the evidence in support of the recommendations and the process that was used to develop the guidelines. However, it is highly recommended that practice settings/environments adapt these guidelines in formats that would be user-friendly for daily use. This guideline has some suggested formats for local adaptation and tailoring. Organizations wishing to use the guideline may do so in a number of ways: a) Assess current nursing and health-care practices using the recommendations in the guideline. b) Identify recommendations that will address identified needs or gaps in services. c) Develop a plan to implement the recommendations systematically, using associated tools and resources. The Registered Nurses’ Association of Ontario is interested in hearing how you have implemented this guideline. Please contact us to share your story. Implementation resources will be made available at our website (www.rnao.org) to assist individuals and organizations in implementing best practice guidelines. 4 R E G I S T E R E D N U R S E S ’ A S S O C I AT I O N O F O N TA R I O  End-of-life Care During the Last Days and Hours Summary of Recommendations BACKGROUND Practice Recommendations for Assessment at the End of Life Level of RECOMMENDATION Evidence 1.1 Nurses identify individuals who are in the last days and hours of life. IIa–IV 1.1.1 Use clinical expertise, disease specific indicators and validated tools to identify these individuals. 1.1.2 Understand the end-of-life trajectories. 1.2 Nurses understand the common signs and symptoms present during the last days and hours of life. IIb–IV 1.2.1 Common signs of imminent death, may include, but are not limited to: progressive weakness; bedbound state; sleeping much of the time; decreased intake of food and fluid; darkened and/or decreased urine output; difficulty swallowing (dysphagia); delirium not related to reversible causes; decreased level of consciousness not related to other causes; noisy respiration/ excessive respiratory tract secretion; change in breathing pattern (Cheyne-Stokes respiration, periods of apnea); and mottling and cooling extremities. 1.3 Nurses complete a comprehensive, holistic assessment of individuals and their families based on IIb–IV* the Canadian Hospice Palliative Care Association Domains of Care, which include the following: disease management; physical; psychological; spiritual; social; practical; end-of-life care/ death management; and loss, grief. 1.3.1 Include information from multiple sources to complete an assessment. These may include proxy sources such as the family and other health-care providers. 1.3.2 Use evidence-informed and validated symptom assessment and screening tools when available and relevant. 1.3.3 Reassess individuals and families on a regular basis to identify outcomes of care and changes in care needs. 1.3.4 Communicate assessments to the interprofessional team. 1.3.5 Document assessments and outcomes. BEST PRACTICE GUIDELINES w w w. r n a o. o r g 5  End-of-life Care During the Last Days and Hours 1.4 Nurses: III–IV reflect on and are aware of their own attitudes and feelings about death; BACKGROUND assess individuals’ preferences for information; understand and apply the basic principles of communication in end-of-life care; communicate assessment findings to individuals (if possible and desired) and the family on an ongoing basis; educate the family about the signs and symptoms of the last days and hours of life, with attention to their: faith and spiritual practices; age-specific needs; developmental needs; cultural needs; and evaluate the family’s comprehension of what is occurring during this phase. Practice Recommendations for Decision Support at the End of Life 2.1 Nurses recognize and respond to factors that influence individuals and their families’ involvement in Ib, IV, IV* decision-making. 2.2 Nurses support individuals and families to make informed decisions that are consistent with their Ia – IV* beliefs, values and preferences in the last days and hours of life. Practice Recommendations for Care and Management at the End of Life 3.1 Nurses are knowledgeable about pain and symptom management interventions to enable individualized III–IV care planning. 3.2 Nurses advocate for and implement individualized pharmacologic and non-pharmacologic care strategies. Ia–IV 3.3 Nurses educate and share information with individuals and their families regarding: Ib–III reconciliation of medications to meet the individual’s current needs and goals of care; routes and administration of medications; potential symptoms; physical signs of impending death; vigil practices; self care strategies; identification of a contact plan for family when death has occurred; and care of the body after death. 3.4 Nurses use effective communication to facilitate end of life discussions related to: III cultural and spiritual values, beliefs and practices; emotions and fears; past experiences with death and loss; clarifying goals of care; family preference related to direct care involvement; practical needs; informational needs; supportive care needs; loss and grief; and bereavement planning. 6 R E G I S T E R E D N U R S E S ’ A S S O C I AT I O N O F O N TA R I O  End-of-life Care During the Last Days and Hours Education Recommendations 4.1 Entry to practice nursing programs and post-registration education incorporate specialized end-of-life Ia–III BACKGROUND care content including: dying as a normal process including the social and cultural context of death and dying, dying trajectories and signs of impending death; care of the family (including caregiver); grief, bereavement and mourning; principles and models of palliative care; assessment and management of pain and other symptoms (including pharmacologic and non-pharmacologic approaches); suffering and spiritual/existential issues and care; decision-making and advance care planning; ethical issues; effective and compassionate communication; advocacy and therapeutic relationship-building ; interprofessional practice and competencies; self-care for nurses, including coping strategies and self-exploration of death and dying; end-of-life issues in mental health, homelessness and the incarcerated; the roles of grief and bereavement educators, clergy, spiritual leaders and funeral directors; and knowledge of relevant legislation. 4.2 Successful education in end-of-life care includes specific attention to the structure and process of Ib–III learning activities and incorporates: small group learning; dyadic and experiential learning approaches; integration and consolidation of theory and practice; opportunities to practice the skills and competencies acquired; constructive feedback and/or reflection on acquired knowledge, skills and competencies; and contact with knowledgeable and supportive clinical supervisors and mentors. BEST PRACTICE GUIDELINES w w w. r n a o. o r g 7  End-of-life Care During the Last Days and Hours Organization & Policy Recommendations 5.1 Models of care delivery support the nurse, individual and family relationship. III–IV BACKGROUND 5.2 Organizations recognize that nurses’ well-being is a critical component of quality end-of-life care and III–IV adopt responsive strategies. 5.3 Organizations providing end-of-life care demonstrate evidence of a philosophy of palliative care based III–IV on the Canadian Hospice Palliative Care Association’s The Model to Guide Hospice Palliative Care. 5.4 Nursing best practice guidelines can be successfully implemented only when there are adequate IV planning, resources, organizational and administrative supports, as well as appropriate facilitation. Organizations may wish to develop a plan for implementation that includes: An assessment of organizational readiness and barriers to implementation Involvement of all members (whether in a direct or indirect supportive function) who will contribute to the implementation process. Dedication of a qualified individual to provide the support needed for the education and implementation process. Ongoing opportunities for discussion and education to reinforce the importance of best practices. Opportunities for reflection on personal and organizational experience in implementing guidelines. In this regard, a panel of nurses, researchers and administrators developed the Toolkit: Implementation of Clinical Practice Guideline (2002) based on available evidence, theoretical perspectives and consensus. The Toolkit is recommended for guiding the implementation of the RNAO guideline End-of-life Care During the Last Days and Hours. 8 R E G I S T E R E D N U R S E S ’ A S S O C I AT I O N O F O N TA R I O  End-of-life Care During the Last Days and Hours Interpretation of Evidence Evidence to support nursing care for individuals at the end of life and their family members is considered with respect to BACKGROUND its type, quality and level. Randomized control trials (RCTs) are traditionally considered the “gold standard” of evidence to support the effectiveness of interventions and to guide practice. As such, RCTs have become the benchmark for the estab- lishment of a hierarchy of levels of evidence against which all other ways of knowing are of lesser value. Since RCTs are not always possible to conduct, particularly in end-of-life care, nurses must look toward evidence from other research, such as quasi-experimental and non-experimental quantitative study designs to inform their practice. In “grading” the evidence to support the recommendations in this guideline, the developers’ recognize that there are multiple ways of knowing and understanding that can contribute to the evidence, not only with respect to effectiveness but also the feasibility and appropriateness of interventions, for example, observational studies, qualitative investigations and clinical expertise can provide valuable insights into practices from client and clinician perspectives. All of these approaches contribute to the evidence regarding provision of quality end-of-life care. In rating the evidence, the developers are mindful that the criterion used varies depending on the research purpose and question. The grading criterion for examining the effectiveness of interventions is not suited to questions regarding prognosis. Therefore, two separate grading criteria were used to evaluate the evidence for this best practice guideline. Types of Evidence Type Therapy/Prevention/Etiology/Harm Prognosis Ia Evidence obtained from systematic review and Evidence obtained from systematic review of inception meta-analysis of randomized controlled trials. cohort studies. Ib Evidence obtained from at least one well-designed Evidence obtained from at least one well-designed randomized controlled trial. inception cohort study with follow-up. IIa Evidence obtained from at least one well-designed Evidence obtained from systematic review of retrospective controlled study without randomization. cohort studies or untreated control groups in randomized controlled trials. IIb Evidence obtained from at least one other type of Evidence obtained from at least one well-designed well-designed quasi-experimental study. retrospective cohort study or follow-up of untreated control patients in a randomized controlled trial. III Evidence obtained from at least one well-designed non- Evidence obtained from at least one well-designed experimental quantitative study (i.e. comparative non-experimental quantitative study (i.e. case-series, or correlational) or qualitative study. case-control studies, cohort studies and historically controlled studies). IV Evidence obtained from expert committee reports or opinions, Evidence obtained from expert committee reports or opinions, and/or clinical experiences of respected authorities. and/or clinical experiences of respected authorities. IV* Evidence obtained from other clinical practice guidelines. Evidence obtained from other clinical practice guidelines. Adapted from: Centre for Evidence-Based Medicine. CEBM levels of evidence. Oxford, UK: Oxford Centre for Evidence- Based Medicine, University of Oxford. Retrieved June 10, 2011, from http://www.cebm.net/index.aspx?o=5653 BEST PRACTICE GUIDELINES w w w. r n a o. o r g 9  End-of-life Care During the Last Days and Hours Development Panel Members BACKGROUND Christine McPherson RN, BScN (Hons), MSc, PhD Marg Poling RN, BScN Chair Palliative Pain and Symptom Management Consultation / Client Associate Professor Service Manager School of Nursing, Faculty of Health Sciences, North West Community Care Access Centre University of Ottawa Thunder Bay, Ontario Ottawa, Ontario Carol Sloan RN, CHPCN(C) Debora Cowie RPN Manager/Palliative Care Consultant Grief and Bereavement Educator Palliative Care Consultation Program Staff Nurse Oakville, Ontario Ontario Shores Centre for Mental Health Sciences Whitby, Ontario Loretta Ward RN, CHPCN(C) Program Manager Beverley Cross RN, BScN, CHPCN(C) Good Shepherd Centres – Emmanuel House Program Development Educator Hamilton, Ontario Palliative Care Services Regina Qu’Appelle Health Region Sandy White RN, BScN, MN, CHPCN(C) Regina, Saskatchewan Trent/Fleming School of Nursing Trent University Beverly Ann Faubert RN, BScN Peterborough, Ontario Long Term Care Best Practice Coordinator Registered Nurses’ Association of Ontario Frederick Go RN, BSc, BScN, MN Toronto, Ontario Program Manager International Affairs and Best Practice Guidelines Program Debbie Gravelle RN, BScN, MHS Registered Nurses’ Association of Ontario Manager/Advanced Practice Nurse Toronto, Ontario Regional Palliative Care Community Élisabeth Bruyére Hospital Glynis Vales BA Ottawa, Ontario Program Assistant International Affairs and Best Practice Guidelines Program Julia Johnston RN(EC), BScN, MN, NP Adult, Registered Nurses’ Association of Ontario CHPCN(C) Toronto, Ontario Advanced Practice Nurse Palliative Care Program Shirley Alvares RN, BScN, MN/Ed Trillium Health Centre Research Assistant Mississauga, Ontario Registered Nurses’ Association of Ontario Toronto, Ontario Lynn Kachuik RN, BA, MS, CON(C), CHPCN(C) Advanced Practice Nurse Abida Dhukai RN(EC), BScN, MN Palliative Care Research Assistant The Ottawa Hospital Registered Nurses’ Association of Ontario Ottawa, Ontario Toronto, Ontario Patricia Lafantaisie RN, BScN Kelly Kilgour BScN, MScN, CHPCN(C) Case Manager Research Assistant North-East Community Care Access Centre Registered Nurses’ Association of Ontario Sudbury, Ontario Toronto, Ontario Mary Ann Murray RN, MScN, PhD, CON(C), GNC(C), CHPCN(C) Advanced Practice Nurse Declarations of interest and confidentiality were made Home Dialysis Unit The Ottawa Hospital by all members of the guideline development panel. Ottawa, Ontario Further details are available from the Registered Nurses’ Association of Ontario. 10 R E G I S T E R E D N U R S E S ’ A S S O C I AT I O N O F O N TA R I O  End-of-life Care During the Last Days and Hours Stakeholder Acknowledgement Stakeholders representing diverse perspectives were solicited for their feedback and the Registered Nurses’ Association of BACKGROUND Ontario would like to acknowledge the following for their contribution in reviewing this Nursing Best Practice Guideline: Name, credentials Title, organization, city, province Jennifer Adams RPN Registered Practical Nurse Palliative Care Unit, Toronto Grace Health Center Toronto, Ontario Shelly Archibald RN, BScN Public Health Nurse Ontario Region First Nation and Inuit Health Sioux Lookout, Ontario Linda Bayly RN, BScN, GNC(C) Corporate Nursing Consultant AON Health Services Peterborough, Ontario Darcee R. Bidgood RN, BSN, President, Canadian Hospice Palliative Care Nurse Group MSN, CHPCN(C) Research Project Coordinator, Center on Aging University of Victoria, Victoria, British Columbia Christine Bigelow RN, BScN, CHPCN(C) Palliative Nurse Consultant HPC Consultation Services, Wellington County, Ontario Sara Clemens RN, BNSc, MN Nursing Policy Analyst Registered Nurses’ Association of Ontario Toronto, Ontario Michelle Court RN Registered Nurse St. Joseph’s Hospital Hamilton Mountain Site, Hamilton, Ontario Marg Cutrara RN, BScN, MS(c) Clinical Nurse Specialist – Hospice Palliative Care Teams for Central LHIN Southlake Regional Health Centre, Newmarket, Ontario Michelle DaGloria RN, BScN Clinical Educator – Medicine Guelph General Hospital, Guelph, Ontario Ursula Danner RN(EC), MPH Palliative Nurse Practitioner North West Community Care Access Center Thunder Bay, Ontario Meta Evans RN Pediatric Adult Palliative Care Advisor Bayshore Home Health, Thunder Bay, Ontario David Goddard RN, MScN Director of Care Meadow Park Care Centre, London, Ontario BEST PRACTICE GUIDELINES w w w. r n a o. o r g 11  End-of-life Care During the Last Days and Hours Betty Ann Goertz RN, BScN, CPMHN(C) Registered Nurse – Acute Mental Health London Health Science, London, Ontario BACKGROUND Leslie Grightmire RN, MScN, EdD Faculty Trent/Fleming School of Nursing , Peterborough, Ontario Cathy Joy RN, BScN, CHPCN(C) Palliative Care Consultant Palliative Pain and Symptom Management Consultation Service – Waterloo Region, Kitchener, Ontario Cathy A. Kiteley RN, BScN, MSc, Clinical Nurse Specialist – Palliative Care CON(C), CHPCN(C) Credit Valley Hospital, Mississauga, Ontario Sylvia A. Kommusaar RN Registered Nurse Extendicare Van Daele, Sault Ste. Marie, Ontario Charlotte Koso RN, BN, CHPCN(C) Manager, Program Planning/Service Integration Care Partners, Moffat, Ontario Lisa Lallion RN, BScN, MN Clinical Nurse Specialist Sunnybrook Health Sciences Centre North & East GTA Stroke Network, Toronto, Ontario Suzanne Leece RN, BScN Palliative Care Nurse Clinician Hamilton Niagara Haldimand Brant Community Care Access Centre Hamilton, Ontario Patricia McQuinn RN, BSc, Clinical Nurse Specialist MSc(A) Nursing Horizon Regional Authority Extra Mural Program Zone 1, Moncton, New Brunswick Dr. Nancy M. Merrow MD, CCFP, FCFP Palliative Lead for CCO in LHIN 8 Southlake Regional Health Centre, Newmarket, Ontario Diane Reid RN, BScN, CHPCN(C) Palliative Care Consultant Palliative Pain and Symptom Management Program – Niagara St. Catharines, Ontario Elizabeth Smallwood RN, CHPCN(C) Manager / Palliative Care Consultant Timiskaming Palliative Care Network, Kirkland Lake, Ontario Sharon Specht RN, BA, BScN, CHPCN(C) Manager, Thompson Centre Continuing Care Division Yukon Territorial Government, Whitehorse, Yukon 12 R E G I S T E R E D N U R S E S ’ A S S O C I AT I O N O F O N TA R I O  End-of-life Care During the Last Days and Hours Introduction BACKGROUND Background Context Care of individuals who are dying is an integral part of health care. In Canada, chronic disease is the predominant cause of death, with deaths from cancer now exceeding deaths from cardiovascular diseases. These two diseases now account for almost 60% of all deaths in Canada (Statistics Canada, 2007a; Statistics Canada, 2007b). The prevalence of chronic disease in older adults, combined with an aging population, means that providing high-quality care specific to the needs of individuals at the end of life and their families is imperative. In her report entitled Raising the Bar, Carstairs (2010) highlights issues that face stakeholders in building capacity to ensure that end-of-life care is accessible to all Canadians. In this report, with the exception of sudden death, individuals (i.e. a person with life-limiting illness and/or their family members) with end-stage disease, frailty or terminal illness are identified as potentially benefiting from end-of-life care. What are Palliative, Hospice and End-of-life care? Palliative care is both a philosophy and an approach to care. Although the terms palliative care, hospice care and end-of-life care are often used interchangeably, there are differences among them. As Figure 1 illustrates, palliative care (identified as hospice palliative care in the figure) is not restricted to care during the last months or days of life. Rather, palliative care can be used in conjunction with curative treatments. Hospice care, on the other hand, usually refers to the last months of life and brings with it an association with the place of care as a specialized facility. End-of-life care more accurately reflects the emphasis on the last days and hours of life (Figure 1). Therefore, throughout this guideline we have chosen to use the term end-of-life care, since this is the focus of this guideline. Regardless of the term, a palliative approach to the care of people facing life-limiting disease is the common philosophical basis. The Canadian Hospice Palliative Care Association (CHPCA) defines hospice palliative care as an approach to care that aims to: “Relieve suffering and improve the quality of living and dying. Such care approach strives to help patients and fami- lies: 1) Address physical, psychological, social, spiritual and practical issues, and their associated expectations, needs, hopes and fears; 2) Prepare for and manage self-determined life closure and the dying process; and 3) Cope with loss and grief during the illness and bereavement” (Ferris et al., 2002, p. 17) The World Health Organization’s (WHO) definition of palliative care closely aligns with the CHPCA’s definition of hospice palliative care. WHO (2002) defines palliative care as an approach to care that aims to: “Improve the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treat- ment of pain and other problems, physical, psychosocial and spiritual.” (p.14). BEST PRACTICE GUIDELINES w w w. r n a o. o r g 13  End-of-life Care During the Last Days and Hours Focus of Therapy to modify disease BACKGROUND Care Hospice Palliative Care Therapy to relieve suffering and/or improve quality of life Presentation/ TIME —> END-OF-LIFE Diagnosis CARE BEREAVEMENT ACUTE Patient’s Death Figure 1. The role of hospice palliative care during illness Ferris, FD., Balfour, HM., Bowen, K., Farley, J., Hardwick, M., Lamontagne, C., Lundy, M., Syme, A. West, P. A Model to Guide Hospice Palliative Care. Ottawa, ON: Canadian Hospice Palliative Care Association, 2002. Adapted and reprinted with Permission from Canadian Hospice Palliative Care Association End-of-life Care Within the palliative care philosophy, death is viewed as a normal process; thus, the aim of palliative care is to neither hasten nor postpone death. End-of-life care (CHPCA, 2002): Encompasses care of the whole person, including his/her physical, psychological, social, spiritual and practical needs. Ensures that care is respectful of human dignity. Supports meaningful living as defined by the individual. Tailors care planning to meet the individual’s goals of care. Recognizes the individual with life-limiting disease and his/her family as the unit of care. Supports the family to cope with loss and grief during the illness and bereavement periods. Respects the individual’s personal, cultural and religious values, beliefs and practices in the provision of care. Values ethical principles of autonomy, beneficence, non-maleficence, justice, truthfulness and confidentiality. Recognizes the individual as autonomous, who has a right to end-of-life care and to make decisions regarding his/ her care to the degree he/she desires. Recognizes the importance of a collaborative interprofessional team approach to care, and also recognizes the efforts of non-health-care professionals (e.g. volunteers, faith leaders). 14 R E G I S T E R E D N U R S E S ’ A S S O C I AT I O N O F O N TA R I O  End-of-life Care During the Last Days and Hours Integrating end-of-life care The health-care system’s focus on curative approaches means that health-care professionals are often unfamiliar with pal- BACKGROUND liative care and the skills required to provide it. Furthermore, end-of-life care is most often associated with specialized settings, such as hospice and palliative care units. Consequently, health-care professionals may not associate a palliative approach to care to their particular setting on a busy acute unit or long-term care setting. Yet, the majority of people die in hospital and the number of people dying at home or in long-term care settings is also increasing (Wilson et al., 2009). Only a small proportion of people actually receive end-of-life care in specialized settings and the vast majority of these people die from advanced cancer (Canadian Institute for Health Information, 2007). Although individuals with frailty and non- cancer life-limiting illness could benefit from end-of-life care, clinicians are faced with such challenges as identification of the terminal phase of the disease, changing symptoms and a short period of active dying (Doyle, Hanks, & MacDonald, 1993; Plonk & Arnold, 2005). Improving education on the signs of impending death and integrating the palliative philosophy of care earlier into the disease trajectory, are strategies that could improve care to individuals living with life-limiting illness across health-care settings. Nursing care at the end of life Across health-care sectors, nurses – through ongoing assessment, intervention and evaluation – have a unique therapeutic relationship with individuals. Because of this unique position, nurses are able to ensure continuity of care that is responsive to the needs of individuals with life-limiting illness. Integral to the nursing role is advocacy, i.e. initiating and supporting decision-making, providing guidance and information, and collaborating with other health-care professionals (Bryon, Gast- mans, & De Casterle, 2008). Due to the frequency of interactions with individuals, nurses are likely to be the first health-care professional to recognize that the person is reaching the last days and hours of life. It is at this pivotal time that nurses can make a significant contribution to the life of an individual nearing death and to his/her family before, during and after the death. Fundamental to end-of-life care is knowledge of issues associated with illness and bereavement, as described in the CHPCA’s A Model to Guide Hospice Palliative Care (2002) (Figure 2). Complementing this knowledge are nursing compe- tencies required to effectively manage the dynamic and complex situation surrounding end-of-life care (College of Nurses of Ontario, 2010; Canadian Nurses Association, 2008). It is, therefore, not surprising to find that many nurses find caring for individuals during the last days and hours of life challenging and feel ill-prepared to provide end-of life care (Betcher, 2010; Holland & Neimeyer, 2005; Thacker, 2008) BEST PRACTICE GUIDELINES w w w. r n a o. o r g 15  End-of-life Care During the Last Days and Hours Disease management Physical Psychological Primary diagnosis, prognosis, Pain and other symptoms Personality, strengths, BACKGROUND evidence Level of consciousness, behaviour, motivation Secondary diagnosis (e.g. cognition Depression, anxiety dementia, substance use) Function, safety, aids (motor, Emotions Comorbidities senses, physiologic, sexual) Fears (e.g. delirium, seizures) Fluids, nutrition Control, dignity, independence Adverse events Wounds Conflict, guilt, stress, coping (e.g. side effects) Habits responses Allergies Self-image Loss, grief Social Loss Cultural values, beliefs, Grief (e.g. acute, chronic, Person and family practices anticipatory) Demographics Relationships, roles with Bereavement planning Culture family/friends, community Mourning Personal values, beliefs, Isolation, abandonment, practices and strengths reconciliation Developmental stage, Safe environment education, literacy Privacy, intimacy Disabilities Routines, recreation, vacation End of life care/ Legal issues Death management Family/caregiver protection Life closure Guardianship, custody issues Gift giving Legacy creation P reparation for expected death Anticipation and management of physiological changes in the Practical Spiritual last hours of life Activities of daily living Meaning, value Rites, rituals (e.g. personal care, household Existential, transcendental Pronouncement, certification activities) Values, beliefs, practices, Perideath care of family, Dependents, pets affiliations handling of body Telephone access, transportation Spiritual advisors, rites, rituals Funerals, services Symbols, icons Figure 2. Domain of issues associated with illness and bereavement Ferris, FD., Balfour, HM., Bowen, K., Farley, J., Hardwick, M., Lamontagne, C., Lundy, M., Syme, A. West, P. A Model to Guide Hospice Palliative Care. Ottawa, ON: Canadian Hospice Palliative Care Association, 2002. Reprinted with Permission from Canadian Hospice Palliative Care Association 16 R E G I S T E R E D N U R S E S ’ A S S O C I AT I O N O F O N TA R I O  End-of-life Care During the Last Days and Hours Guiding Principles Underlying End-of-life Care During the Last Days and Hours Guideline BACKGROUND The principles and values underlying the development of this guideline are consistent with the palliative care philosophy described above. While we recognize the existence of several models to guide palliative care practice and service provision, the CHPCA’s A Model to Guide Hospice Palliative Care was the foundation for the development of this guideline as there is national consensus in Canada regarding the use of this model. In addition, this guideline is based on the following beliefs: Evidence-based practice is the guiding model for clinical best practice guidelines.  vidence-based practice includes the application of the most current research evidence, sound clinical judgment E and consideration of individuals’ values, preferences and goals of care. Evidence-based practice will positively impact the quality of end-of-life care, and individual and system outcomes. Each individual has a right to evidence-based quality care during the last days and hours of life. Nurses are uniquely positioned, through their frequent therapeutic interactions with individuals and their families, to influence positive outcomes. Health systems strategies are required to ensure that each person approaching the end of life has access to care re- gardless of sector or geographic location. Education informed by the best available evidence is necessary for quality end-of-life care. Organizational supports and strategies must be in place to translate knowledge into the practice environment. BEST PRACTICE GUIDELINES w w w. r n a o. o r g 17  End-of-life Care During the Last Days and Hours Purpose Best practices are emerging guidelines on the approaches and elements of care and treatment that appear to result in successful BACKGROUND client outcomes. Given this definition, best practices are recommendations that may evolve, based on ongoing key expert experience, judgment, perspective and continued research (Health Canada, 2008). Best practice guidelines are an accepted method of providing current evidence for nurses to use to guide their practice. These guidelines synthesize the current evidence, and recommend best practices based on this evidence, Appendix B and Appendix C. They offer nurses a reliable source of information upon which to make decisions concerning practice. The purpose of this best practice guideline is to provide evidence-based recommendations for Registered Nurses and Registered Practical Nurses on best nursing practices for end-of-life care during the last days and hours of life. The guideline does not replace consultation with palliative care specialists, who can support nurses to provide quality end-of-life care. The guideline is intended to be a resource to nurses who may not be experts in this practice area. It is acknowledged that individual competencies vary between nurses and across categories of nursing professionals. The inclusion of recommendations on clinical, education, organization and policy topics makes this guideline applicable to nurses in all domains and settings of practice. Scope This guideline focuses on recommendations for adults, aged 18 years and older, who have reached the part of the illness trajectory that includes the last days and hours of life. The clinical questions to be addressed by the guideline are: 1. What knowledge and skills do nurses require to identify and assess individuals and families during the last days and hours of life? 2. What knowledge, skills and tools do nurses require to support individuals and their families in making informed choices during the last hours and days of life? 3. What palliative interventions are needed to address the experiences faced by individuals and their families during the last days and hours of life? 4. What supports are needed to assist nurses in providing high-quality care in the last hours and days of life? In developing this guideline, we are mindful that the scope of the guideline does not permit an in-depth review of care of individuals dying from particular illnesses and associated issues. Nor does it allow for a comprehensive examination of all elements included in the CHPCA Domains of Issues. Moreover, the focus of this guideline precludes extensive review of issues pertinent to the provision of hospice palliative care across the trajectory of life-limiting illness (Figure 3). Therefore, the development group selected the most common issues encountered by individuals and their families during the last hours and days of life. It should be noted that the RNAO guidelines listed below (www.rnao.org/bestpractices), as well as guidelines developed by other organizations and agencies (Appendix C), can complement this guideline: Assessment and Management of Pain Establishing Therapeutic Relationships Client-centered Care Screening for Delirium, Depression and Dementia Care Strategies for Individuals with Delirium, Depression and Dementia Nursing care of Dyspnea: The 6th Vital Sign in Individuals with Chronic Obstructive Pulmonary Disease (COPD) Supporting and Strengthening Families through Expected and Unexpected Life Events Bereavement Care 18 R E G I S T E R E D N U R S E S ’ A S S O C I AT I O N O F O N TA R I O  End-of-life Care During the Last Days and Hours Focus of Therapy to modify disease BACKGROUND Care Hospice Palliative Care Therapy to relieve suffering and/or improve quality of life Presentation/ TIME —> END-OF-LIFE Diagnosis CARE BEREAVEMENT ACUTE Patient’s Death Figure 3. The role of hospice palliative care during illness Ferris, FD., Balfour, HM., Bowen, K., Farley, J., Hardwick, M., Lamontagne, C., Lundy, M., Syme, A. West, P. A Model to Guide Hospice Palliative Care. Ottawa, ON: Canadian Hospice Palliative Care Association, 2002. Adapted and reprinted with Permission from Canadian Hospice Palliative Care Association BEST PRACTICE GUIDELINES w w w. r n a o. o r g 19  End-of-life Care During the Last Days and Hours SECTION 1: PRACTICE RECOMMENDATIONS FOR ASSESSMENT AT THE END OF LIFE BACKGROUND Disease management Physical Psychological Primary diagnosis, prognosis, Pain and other symptoms Personality, strengths, evidence Level of consciousness, behaviour, motivation Secondary diagnosis (e.g. cognition Depression, anxiety dementia, substance use) Function, safety, aids (motor, Emotions Comorbidities senses, physiologic, sexual) Fears (e.g. delirium, seizures) Fluids, nutrition Control, dignity, independence Adverse events Wounds Conflict, guilt, stress, coping (e.g. side effects) Habits responses Allergies Self-image Loss, grief Social Loss Cultural values, beliefs, Grief (e.g. acute, chronic, Person and family practices anticipatory) Demographics Relationships, roles with Bereavement planning Culture family/friends, community Mourning Personal values, beliefs, Isolation, abandonment, practices and strengths reconciliation Developmental stage, Safe environment education, literacy Privacy, intimacy E nd of life care/ Disabilities Routines, recreation, vacation Death management Legal issues Life closure Family/caregiver protection Gift giving Guardianship, custody issues Legacy creation P reparation for expected death Anticipation and management of physiological changes in the Practical Spiritual last hours of life Activities of daily living Meaning, value Rites, rituals (e.g. personal care, household Existential, transcendental Pronouncement, certification activities) Values, beliefs, practices, Perideath care of family, Dependents, pets affiliations handling of body Telephone access, transportation Spiritual advisors, rites, rituals Funerals, services Symbols, icons Ferris, FD., Balfour, HM., Bowen, K., Farley, J., Hardwick, M., Lamontagne, C., Lundy, M., Syme, A. West, P. A Model to Guide Hospice Palliative Care. Ottawa, ON: Canadian Hospice Palliative Care Association, 2002. Reprinted with Permission from Canadian Hospice Palliative Care Association 20 R E G I S T E R E D N U R S E S ’ A S S O C I AT I O N O F O N TA R I O  End-of-life Care During the Last Days and Hours Background Context Throughout the illness trajectory, there are many issues and domains of practice that nurses and health-care teams must BACKGROUND consider and address when providing care for individuals at the end of life. While we recognize that consideration for hospice palliative care can begin at any point of the trajectory, this guideline focuses on the last days and hours of life. One aspect is identifying individuals who are in the last days and hours of life. This is an important skill, since recognition of impending death and discussion about relevant clinical interventions facilitates identification of end-of-life goals, care preferences, wishes regarding preferred place of death, and planning and implementation of care (Ellershaw, 2003). Failure to identify the signs and symptoms of impending death may lead to futile treatments (e.g. cardiopulmonary resuscitation), as well as conflicts between individuals, their families and the health-care team. Studies have shown that clinicians are often inaccurate in estimating survival times (Lau et al., 2007). Estimates tend to be inaccurate and overly optimistic (Lau et al., 2007). Chow and colleagues (2008) found that clinicians can improve their prediction accuracy with repeated measurement over time and through the application of validated prognostic tools and clinical indicators. Lynn’s (2001) end-of-life trajectories (Figure 4) can assist clinicians in identifying individuals who may benefit from hospice palliative care. The trajectories show three typical patterns of decline for individuals with cancer, chronic illness and frailty: 1. For most cancers there is a short period of obvious decline leading to death. 2. The trajectory for patients with chronic organ failure is characterized by long-term disability with periodic exacerbations and unpredictable timing of death. 3. For those with frailty and dementia, the pattern is characterized by a slow dwindling course to death. It is important to remember that there may be considerable variation within these patterns and between individuals. In addition, awareness by health professionals of signs of impending death is one way to facilitate recognition and preparation for death. HIGH MOSTLY CANCER Figure 4. End-of-life trajectories (Lynn, 2001) FUNCTION DEATH Journal of the American Medical Association, 2001, Vol. 285, Issue 7, 925-932 Copyright © (2001) American Medical Association LOW TIME Preparation for death includes ongoing communication regarding SHORT PERIOD OF EVIDENT DECLINE the individual’s transition to the dying phase among members of the health-care team, the individual and family. Miscommunication HIGH can lead to mixed messages, loss of trust, conflict and poor care MOSTLY HEART AND LUNG FAILURE FUNCTION management (NCI, 2002; NCCN, 2003). In a study of seriously ill indi- viduals across Canada, Heyland and colleagues (2010) found that DEATH family caregivers gained support and felt great relief at being able LOW to talk about their loved one’s impending death with nurses. Family TIME caregivers also identified the importance of a team approach, and LONG TERM LIMITATIONS WITH INTERMITENT SERIOUS EPISODES the need for improved and sensitive communication and information regarding end-of-life care. Heyland and colleagues (2010) also HIGH identified several priorities for improving end-of-life care: psy- chological interventions; spiritual support; enhanced care plan- FUNCTION MOSTLY FRAILTY AND DEMENTIA ning; improved physician/individual relationships; and better DEATH communication and decision-making. LOW TIME PROLONGED DWINDLING BEST PRACTICE GUIDELINES w w w. r n a o. o r g 21  End-of-life Care During the Last Days and Hours Practice Recommendations for Assessment at the End of Life Recommendation 1.1 Nurses identify individuals who are in the last days and hours of life. 1.1.1 Use clinical expertise, disease-specific indicators and validated tools to identify these individuals. 1.1.2 Understand the end-of-life trajectories. Type IIa-IV Evidence Discussion of Evidence R E C O M M E N D AT I O N S In several studies, clinical symptoms have been found to be a strong predictor of survival time (Glare, 2004; Harrold, 2005; Lau, 2007; Lau, 2008; Lau, 2009). Other studies have reported a positive association between shortened life span and a range of clinical symptoms such as anorexia, weight loss, dysphagia, dyspnea, congestive heart failure, confusion and delirium (Georges, 2005; Leonard, Agar, Mason, & Lawlor, 2008; Leonard, et al., 2008; Tilden, Tolle, Drach & Perrin, 2004). Overall, level of functioning appears to be the most important indicator of prognosis (Periera, 2008). Lau (2009) and Harrold (2005) demonstrated the effectiveness of the Palliative Performance Scale, a tool for measuring functional performance and used by caregivers to identify and track care needs as individuals change with disease progression, in predicting the prognosis of individuals with either a cancer or a non-cancer diagnosis, as well as of heterogeneous hospice population of long-term care home residents. Several empirically validated prognostic tools can also aid in recognition of individuals’ performance status at the end of life. Some of these prognostic tools (Appendix D) include: The Palliative Performance Scale (version 2) (Anderson, Downing, Hill, Casorso, & Lurch, 1996) The Palliative Prognostic Index (Chow et al., 2008; Morito, Tsunoda, Inoue, & Chinara, 1999; Stone, Tierman, & Dooley, 2008). The Palliative Prognostic Score (Maltoni et al., 1999) In addition to prognostic tools, clinical indicators are another method of identifying individuals who are approaching the last days and hours of life. Specific indicators of decline are available for congestive heart failure, chronic obstructive pulmonary disease, dementia, renal disease and stroke (Appendix E). Recommendation 1.2 Nurses understand common signs and symptoms present during the last days and hours of life. 1.2.1 Common signs of imminent death, may include, but are not limited to: progressive weakness; bedbound state; sleeping much of the time; decreased intake of food and fluid; darkened and/or decreased urine output; difficulty swallowing (dysphagia); delirium not related to reversible causes; decreased level of consciousness not related to other causes; noisy respiration/excessive respiratory tract secretion; change in breathing pattern (Cheyne-Stokes respiration, period of apnea); and mottling and cooling extremities. Type IIb – IV Evidence 22 R E G I S T E R E D N U R S E S ’ A S S O C I AT I O N O F O N TA R I O  End-of-life Care During the Last Days and Hours Discussion of Evidence Although each individual’s death experience is unique, some signs of death are common to most individuals. In the context of a deteriorating or progressive life-limiting illness, and in the absence of reversible factors, Stromgren and colleagues (2006) found that various clinical signs often suggest that an individual is within weeks to days of death. These signs include being bedbound or able to get out of bed only with great difficulty, profound weakness or fatigue, little interest in food and drink, difficulty swallowing and increasing somnolence. Research investigating the reliability of the above-identified signs is scarce; however, several studies support the presence of these signs. A systematic review of 44 studies conducted by Teunissen, de Graffe, Voest and de Haes (2007) found that fatigue, pain, lack of energy, weakness and appetite loss were the most frequent symptoms, and occurred in more than 50% of individuals during the last one to two weeks of life. Similarly, Elmqvist, Jordohoy, Bjordal, Kassa and Jannert (2009), in R E C O M M E N D AT I O N S a prospective comparative study, demonstrated significant increase in fatigue, dyspnea and appetite loss in individuals with advanced cancer during the last three months of life. Furthermore, a prospective study by Oi-Ling, Man Wah and Kam-Hung (2005) found that individuals rated fatigue, cachexia and loss of appetite as their most distressing symptoms. Common symptoms of individuals approaching death (Klinkenberg et al. 2004) Fatigue Depression Shortness of breath Anxiety Pain Nausea Confusion Vomiting Recommendation 1.3 Nurses complete a comprehensive, holistic assessment of individuals and their families based on the Canadian Hospice Palliative Care Association Domains of Care, which include the following: disease management; physical; psychological; spiritual; social; practical; end-of-life care/ death management; and loss, grief. 1.3.1 Include information from multiple sources to complete an assessment. These may include proxy sources, such as the family and other health-care providers. 1.3.2 Use evidence-informed and validated symptom assessment and screening tools when available and relevant. 1.3.3 Reassess individuals and families on a regular basis to identify outcomes of care and changes in care needs. 1.3.4 Communicate assessments to the interprofessional team. 1.3.5 Document assessments and outcomes. Type IIb-IV* Evidence BEST PRACTICE GUIDELINES w w w. r n a o. o r g 23  End-of-life Care During the Last Days and Hours Discussion of Evidence It is recommended that nurses practice according to the CHPCA Nursing Standards of Practice (www.chpca.net), Canadian Nurses Association competencies in Hospice Palliative Care Nursing, (www.cna-aic.org) and the College of Nurses of Ontario Standards of Practice (www.cno.org) or appropriate jurisdictional practice standards. In addition, nurses are encouraged to apply information from the CHPCA’s A Model to Guide Hospice Palliative Care, including the Norms of Practice and the Domains of Issues (www.chpca.net). In addition to guidelines developed by other organizations and agencies (Appendix C), several RNAO Best Practice Guidelines are also relevant for care of this population (page 18). It is imperative that nurses focus on a holistic assessment that extends beyond the physical domain to include other domains outlined by the CHPCA. Wong, Liu, Szeto, Sham and Chan (2004) found that the view of death as a sum of life events, addressing physical, psychological and social needs, is not necessarily appreciated by health-care professionals. Indeed, they R E C O M M E N D AT I O N S found that health-care providers tended to focus more on physical aspects, whereas individuals and families tended to view end of life from a broader perspective that is shaped by a lifetime of experience. Research has shown that individuals and their families identify emotional support, quality of the relationship between physicians and individuals and their families, as well as communication and decision-making as factors that require improvement in end-of-life care delivery (Heyland et al., 2010). While information gained from the use of validated assessment tools can be helpful, nurses must recognize that the use of these tools may be hindered by cultural and linguistic barriers. The Edmonton Symptom Assessment System (revised version) (ESAS-r) (Appendix F), which is available in multiple languages, is one such validated tool designed to assist in the assessment of 10 common symptoms: pain, tiredness (lack of energy), drowsiness (feeling sleepy), nausea, lack of appetite, shortness of breath, depression (feeling sad), anxiety (feeling nervous), well-being (overall feeling) and constipation. The ESAS-r conveys the individual’s description of the severity of the symptom on a scale ranging from 0 to 10 at the time of the assessment. However, the ESAS-r is limited with respect to symptom dimensions; moreover, it measures symptom severity only and not quality, impact, patterns or concurrent symptoms. In addition, since the ESAS-r is designed as a self-reporting tool, many individuals in their last days and hours of life will be unable to complete the assessment. In these circumstances, proxies such as family members and other care providers can be an important source of information for some symptoms. The ESAS-r provides a clinical profile of symptom severity over time; however, it is not a complete assessment in itself, as it covers just one part of a holistic clinical assessment. Clinical Tip The use of assessment tools suggested in this guideline must be balanced against the burden to the individual. For individuals who identify pain as an issue, the Brief Pain Inventory (BPI) may be useful. The BPI is a 17-item, multidi- mensional self-reporting tool that evaluates the intensity, severity, location, chronicity, quality, relief and impact of pain on quality of life (Appendix L). Despite advances in pain management, it is estimated that up to 2.5 million people around the world die in pain each year (Mehta & Chan, 2008). The tendency to focus on the physical component of pain and exclude other contributing factors may hinder proper pain management. Pain assessment must go beyond the physical triggers and manifestations of pain. Utilizing a comprehensive pain assessment tool will ensure that all parameters are assessed (RNAO, 2007). When total pain is suspected, health-care professionals must optimize the patient’s analgesic regimen and also provide psychosocial and spiritual counseling and support (Pereira, 2008). An understanding of the concept of total pain is a “necessary prerequisite for effective pain management at the end of life” (Mehta & Chan, 2008, p. 28). The total pain model (Figure 5) forms a useful basis for assessment and management of pain in those who are dying. Dame Cicely Saunders, founder of the 24 R E G I S T E R E D N U R S E S ’ A S S O C I AT I O N O F O N TA R I O  End-of-life Care During the Last Days and Hours modern hospice palliative care movement, coined the term total pain to describe the pain experienced by the dying. She expanded the perception of pain beyond the physical parameter to include psychological, social, emotional and spiritual components. Thus, the assessment of pain in the dying requires a multidimensional assessment, including the individual’s biomedical, psychological and psychiatric characteristics, as well as social, family, existential and spiritual influences. Optimal pain relief may be difficult to achieve unless all aspects of total pain are addressed, as psychosocial and spiritual issues may influence severity, intensity and duration of the pain experience. This further highlights the benefits of an interprofessional approach to the care of the dying. R E C O M M E N D AT I O N S SOCIAL Psychological PAIN PAIN TOTAL PAIN SPIRITUAL PHYSICAL PAIN PAIN Figure 5. Total pain experience: An interactive model (Mehta & Chan, 2008) Mehta, A., & Chan, L. (2008). Understanding the concept of “total pain:” A prerequisite for pain control. Journal of Hospice and Palliative Nursing, 10, 26–32. Reprinted with permission from Journal of Hospice and Palliative Nursing An awareness of the needs of family members and caregivers is also a critical part of a holistic nursing assessment of the dying individual. Riley and Fenton (2007) found that families and caregivers of dying individuals often experience a wide range of feelings and emotions (e.g. exhaustion, anxiety, depression, sleep disturbance, stress). These feelings and emotions inevitably have negative implications for the health and well-being of families and caregivers. Despite experiencing negative feelings and emotions, the majority of family caregivers do not access support for themselves. Reasons given include a lack of awareness of services, the need to be seen to be coping, anxiety about leaving their family member or partner alone and fear of upsetting their family member or partner (Riley & Fenton, 2007). Consequently, many families and caregivers experience feelings of isolation, depression and engagement in behaviours that compromise their health. Several validated tools are available to facilitate assessment of families and caregivers (Table 1). BEST PRACTICE GUIDELINES w w w. r n a o. o r g 25  End-of-life Care During the Last Days and Hours Table 1. Tools for assessment of families and caregivers Category Areas to Assess Possible Questions Assessment tools Context Relationship to care recipient What is the caregiver’s relationship to the care recipient? Physical environment How long has he/she been in (home, facility) the caregiving role? Household status Does the care recipient live (number in home,