These guidelines are not binding on nurses, other health providers or the organizations that employ them. The use of these guidelines should be flexible and based on individual needs and local circumstances. They constitute neither 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 (RNAO) gives any guarantee as to the accuracy of the information contained in them or accepts any liability with respect to loss, damage, injury or expense arising from any such errors or omission in the contents of this work.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 RNAO. Appropriate credit or citation must appear on all copied materials as follows: Registered Nurses' Association of Ontario. A palliative approach to care in the last 12 months of life. Toronto (ON): Registered Nurses' Association of Ontario; 2020.# Table of Contents

# Table of Contents

# How to Use this Document
This best practice guideline (BPG) G - is a comprehensive document that provides guidance and resources for evidence-based nursing practice G . It is not intended to be a manual or "how-to" guide; rather, it supports best practices and decision making for nurses G , the interprofessional health team G and health-service organizations. This BPG should be reviewed and applied in accordance with the needs and preferences G of adults (18 years and older) who are experiencing the last 12 months of a progressive life-limiting illness and their families G . This document provides evidence-based recommendation G statements and descriptions of (a) practice, education G and organizational considerations, (b) benefits and harms, (c) values G and preferences and (d) health equity considerations.
Nurses, members of the interprofessional health team and administrators who lead and facilitate practice changes will find this document invaluable for developing policies, procedures, protocols and educational programs to support service delivery. Nurses and members of the interprofessional health team delivering direct care will benefit from reviewing the recommendations and supporting evidence. We encourage practice settings to adapt this BPG into formats that are feasible for daily use.
If your organization is adopting this BPG, we recommend the following steps:
- Assess your existing policies, procedures, protocols and educational programs in relation to the recommendations and supporting evidence in this BPG.
- Identify existing needs or gaps in your policies, procedures, protocols and educational programs.
- Note the recommendations that are applicable to your setting and that can be used to address your organization's existing needs or gaps.
- Develop a plan for implementing recommendations, sustaining best practices and evaluating outcomes G .
Implementation resources, including the RNAO Toolkit: Implementation of Best Practice Guidelines, Second Edition (1), are available at RNAO.ca. For more information, see Implementation Strategies on p. 84.
All of the RNAO BPGs are available for download, free of charge, on the RNAO website at RNAO.ca/bpg. To locate a particular BPG, search by keyword or browse by topic.
We are interested in hearing your feedback on this BPG and how you implemented it. Please share your story with us at RNAO.ca/contact. - Throughout this document, terms that are marked with a superscript G ( G ) can be found in the Glossary of Terms (Appendix A).

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# Purpose and Scope
Purpose RNAO BPGs are systematically developed, evidence-based documents that include recommendations on specific clinical, healthy work environment and health system topics. They are intended for nurses and members of the interprofessional health team in direct care positions, and for educators, administrators and executives, policymakers, researchers, and persons G and families with lived experience. BPGs promote consistency and excellence in clinical care, administrative practices, policies, and education, with the aim of achieving optimal health outcomes for people, communities and the health system as a whole.
The purpose of this BPG is to provide evidence-based recommendations to nurses and the interprofessional health team who support adults (18 years and older) experiencing the last 12 months of a progressive life-limiting illness, their families and their caregivers. The goals of the recommendations are to: (a) improve delivery of psychosocial, spiritual and culturally safe care; (b) enhance coordination of care; and (c) facilitate supportive work environments.
The recommendations within this BPG are meant to be implemented as part of a holistic approach to care, as outlined in Figure 2: Domains of Issues Associated with Illness and Bereavement (10). It is also in alignment with the aims of palliative care G (see "Key Concepts Used in this Guideline, " p. 7).
Nurses and the interprofessional health team are required to have basic skills, training and competencies in palliative care in order to implement the recommendations of this BPG. For further information, please refer to Appendix C (Education Statements G ), the Ontario Palliative Care Network (OPCN) The Ontario Palliative Care Competency Framework-Nursing Competencies (summarized in Appendix K) and the Framework on Palliative Care in Canada (available at / reports-publications/palliative-care/framework-palliative-care-canada.html#p2.3.1).
In March 2017, RNAO convened an expert panel to determine the scope of this BPG. The RNAO expert panel was interprofessional in composition, including family caregivers G and individuals with knowledge and experience in clinical practice, education, research and policy from a range of health-service and academic organizations, practice areas and sectors. Expert panel members shared their insights on supporting and caring for adults with progressive life-limiting illness across the continuum of care (e.g., community, long-term care and acute care). A systematic and comprehensive analysis was completed by the RNAO Best Practice Guideline Development and Research Team and the RNAO expert panel to determine the scope and priority recommendation questions for this BPG (see Appendix D).

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# Scope
To determine the scope of this BPG, the RNAO Best Practice Guideline Development and Research Team conducted the following steps:
 reviewed the RNAO BPG End-of-life Care During the Last Days and Hours (2011) (2);
 conducted a search for published guidelines in this topic area and identified gaps in guidance;
 conducted a scoping review G to determine the breadth and depth of peer-reviewed studies in the area of Medical Assistance in Dying (MAiD) G , with a specific focus on nursing practice;
 interviewed 24 key informants with experience and expertise in the field, including health providers G in direct care, administrators, researchers and family caregivers; and
 consulted with the expert panel co-chairs and the expert panel in March 2017.
This BPG is applicable to all practice settings where persons and families require palliative care and end-of-life care G services (e.g., acute care, community care, and long-term care). Specifically, this BPG will focus on persons experiencing the last 12 months of progressive life-limiting illness and their families. It will address the following areas:

# BAC K G R O U N D
A Palliative Approach to Care in the Last 12 Months of Life Family caregiver: "Any relative, partner, friend or neighbor who has a significant personal relationship with, and provides a broad range of assistance for, an older person or an adult with a chronic or disabling condition. These individuals may be primary or secondary caregivers and live with, or separately from, the person receiving care" (5).
Health provider: Refers to both regulated workers (e.g., nurses, physicians, dieticians and social workers) and unregulated workers (e.g., personal support workers) who are part of the interprofessional health team.
 Regulated health provider: In Ontario, the Regulated Health Professional Act (RHPA), 1991, provides a framework for regulating 23 health professions, outlining the scope of practice and the profession-specific controlled or authorized acts that each regulated professional is authorized to perform when providing health care and services (6).
 Unregulated health provider: Unregulated health providers fulfill a variety of roles in areas that are not subject to the RHPA. They are accountable to their employers but not to an external regulating professional body (e.g., the College of Nurses of Ontario). Unregulated health providers fulfill a variety of roles and perform tasks that are determined by their employer and employment setting. Unregulated health providers only have the authority to perform a controlled act as set out in the RHPA if the procedure falls under one of the exemptions set out in the Act (7).

# BAC K G R O U N D
A Palliative Approach to Care in the Last 12 Months of Life Topics Outside the Scope of this Best Practice Guideline  Advance care planning G , grief and bereavement support, palliative care competency requirements, pharmacological interventions and symptom management were considered outside of scope. These subjects have been addressed in recent, evidence-based and credible resources currently in publication and/or in legislation.
 See Appendix I for supporting resources related to pain and symptom management.
 See Appendix J and K for supporting resources related to palliative care and end-of-life care education and competency resources.
 See Appendix M for supporting resources related to advance care planning, and grief and bereavement support.
 The scoping review indicated that robust, Canadian-based, peer-reviewed studies that address the role of nurses with MAiD were limited. The role of nurses and MAiD represents an opportunity for future guideline development. In addition, the legislation for MAiD varies between jurisdictions, and this BPG is to be implemented provincially, nationally and internationally.
 See Appendix L for supporting resources related to MAiD.
 Palliative care and end-of-life care for the pediatric population (i.e., infants and children younger than 18 years) is outside the scope of this BPG. The expert panel recognizes that the pediatric population is a unique population with specific considerations for palliative care and end-of-life care. This therefore represents an opportunity for future guideline development.
 This BPG does not address the funding of palliative care and end-of-life care services, although this is an important aspect of every health system and one that governments and government agencies should investigate.

# Differences between this BPG and RNAO's End-of-life Care During the Last Days and Hours (2011) BPG
This BPG does not replace RNAO's 2011 BPG, End-of-life Care During the Last Days and Hours. Rather, the two guidelines differ in the following ways:
 The time frame of this BPG extends beyond the last days and hours of life to include the last 12 months of a progressive life-limiting illness in order to provide recommendations that may be implemented earlier in the palliative care trajectory.
 Based upon the priority recommendation questions and outcomes identified by the expert panel, practice recommendations within this BPG focus on the psychosocial aspect of care; they do not include activities that address physical symptom management. Attention is given to the spiritual, emotional, existential and cultural domains of care, but the recommendations are meant to be implemented as part of a holistic approach to care, as outlined in Figure 2: Domains of Issues Associated with Illness and Bereavement (10).

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# Recommendation Questions
Within the determined scope defined above, the following priority recommendation questions and outcomes were developed by the expert panel. They informed the development of this BPG.

# BAC K G R O U N D
A Palliative Approach to Care in the Last 12 Months of Life Registered Nurses' Association of Ontario Best Practice Guidelines and Resources that Align with this Best Practice Guideline
Other RNAO BPGs and evidence-based resources may support implementation of this BPG. See Appendix B for RNAO BPGs and other resources on the following related topics:
 care transitions;
 crisis intervention;
 constipation;
 delirium, dementia and depression;
 end-of-life care in the last days and hours;
 implementation science, implementation frameworks and resources;
 interprofessional collaboration;
 pain;
 person-and family-centred care;
 pressure injuries; and
 social determinants of health G .
For more information on the guideline development process, systematic review and search strategy for this BPG, see Appendix D.

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# Interpretation of Evidence and Strength of Recommendations
This BPG was developed using an adaptation of the Grading of Recommendations Assessment, Development and Evaluation (GRADE) G and Confidence in the Evidence from Reviews of Qualitative Research (CERQual) G methods. For more information about the guideline development process, including the use of GRADE and GRADE-CERQual methods, see Appendix D.

# Certainty of Evidence
The certainty of evidence (i.e., the level of confidence we have that an estimate of effect G is true) for quantitative research is determined using an adaptation of GRADE methods (11). After synthesizing the evidence for each prioritized outcome, the certainty of evidence is assessed. The overall certainty of evidence is determined by considering the certainty of evidence across all prioritized outcomes of included studies per recommendation. GRADE categorizes the overall certainty of evidence as high, moderate, low or very low. See Table 1 for the definition of these categories.

# Table 1: Certainty of Evidence

# CERTAINTY OF EVIDENCE DEFINITION High
We are very confident that the true effect G lies close to that of the estimate of the effect.

# Moderate
We are moderately confident in the effect estimate: the true effect is likely to be close to the estimate of the effect, but there is a possibility that it is substantially different.

# Low
Our confidence in the effect estimate is limited: the true effect may be substantially different from the estimate of the effect.

# Very low
We have very little confidence in the effect estimate: the true effect is likely to be substantially different from the estimate of effect.
Source: Reprinted from The GRADE Working Group. Quality of evidence. In Schunemann H, Brozek J, Guyatt G, Oxman A, editors. Handbook for grading the quality of evidence and the strength of recommendations using the GRADE approach . : The GRADE Working Group; 2013. Table 5.1, Quality of evidence grades. Available from: #h.wsfivfhuxv4r. Reprinted with permission.

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# Confidence in Evidence
The confidence in evidence for qualitative research G (i.e., the extent to which the review finding is a reasonable representation of the phenomenon of interest) is determined using GRADE-CERQual methods (hereafter referred to as CERQual) (12). For qualitative evidence, an overall judgment of the confidence is made per finding in relation to each recommendation statement, as relevant. CERQual categorizes the confidence in evidence as high, moderate, low or very low. See Table 2 for the definitions of these categories. 

# CONFIDENCE IN EVIDENCE DEFINITION High
It is highly likely that the finding is a reasonable representation of the phenomenon of interest.

# Moderate
It is likely that the finding is a reasonable representation of the phenomenon of interest.

# Low
It is possible that the review finding is a reasonable representation of the phenomenon of interest

# Very low
It is not clear whether the review finding is a reasonable representation of the phenomenon of interest.
Source: Reprinted from Lewin S, Booth A, Glenton C, Munthe-Kass H, Rashidian A, Wainright M et al. Applying GRADE-CERQual to qualitative evidence synthesis findings: introduction to the series. Implement Sci. 2018;13(Suppl 1):1-10. Table 3, Description of level of confidence in a review finding in the CERQual approach; p. 6. Reprinted with permission.
The assigned certainty and/or confidence of evidence can be found directly below each recommendation statement. For more information on the process of determining the certainty and/or confidence of the evidence and the documented decisions made by RNAO guideline development methodologists, see Appendix D. NOTE: Due to the complex and multi-faceted nature of palliative care and end-of-life care, the use of control G groups and the adjustment of confounding variables G are difficult to achieve. Therefore, the majority of research in this area was from observational or non-randomized studies as opposed to randomized controlled trials G (which eliminate contextual factors). For this reason, all of the recommendations have a certainty of evidence that is either low or very low. Despite the generally low certainty of evidence, however, the expert panel determined that the benefits, values and preferences for many of the interventions outweighed the potential harms noted in the research evidence or from personal practice experience. As such, the strength of many of the recommendations is strong (see Strength of Recommendations). This also highlights the need for more rigorous research in the areas of palliative care and end-of-life care.

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# Strength of Recommendations
Recommendations are formulated as strong or conditional by considering the certainty and/or confidence in evidence, and the following key criteria (see the relevant Discussion of Evidence, below, for definitions):
 balance of benefits and harms  values and preferences  health equity.

# Strong Recommendation
A strong recommendation reflects the expert panel's confidence "that the desirable effects of an intervention outweigh its undesirable effects (strong recommendation for an intervention) or that the undesirable effects of an intervention outweigh its desirable effects (strong recommendation against an intervention)" (11). A strong recommendation implies that the majority of persons will be best served by the recommended action (11).

# Conditional Recommendation
A conditional recommendation reflects the expert panel's confidence that while some uncertainty exists, the desirable effects probably outweigh the undesirable effects (i.e., a conditional recommendation for an intervention) or that the undesirable effects probably outweigh the desirable effects (i.e., conditional recommendation against an intervention) (11). A conditional recommendation implies that not all persons will be best served by the recommended action: "there is a need for more careful consideration of personal circumstances, preferences and values" (11).
Note: The strength of the recommendation statement is detailed directly below each recommendation statement and in the Summary of Recommendations. For more information on the process the expert panel used for determining the strength of each recommendation, please see Appendix D.

# Discussion of Evidence
The Discussion of Evidence that follows each recommendation includes the following main sections.
- Benefits and Harms: Identifies the potential desirable and undesirable outcomes reported in the literature when the recommended practice is used. Content in this section solely includes research from the systematic review.
- Values and Preferences: Denotes the relative importance or worth placed on health outcomes from following a particular clinical action from a person-centered perspective. Content for this section may include research from the systematic reviews and, when applicable, observations and/or considerations from the expert panel.

# Health Equity:
Identifies the potential impact that the recommended practice could have on health across different populations and/or barriers to implementing the recommended practice in particular settings. This section may include research from the systematic reviews and, when applicable, observations and/or considerations from the expert panel.

# Expert Panel Justification of Recommendation:
Provides a rationale for why the expert panel made the decision to rate a recommendation as strong or conditional.
- Practice Notes: Highlights pragmatic information for nurses and members of the interprofessional health team. This section may include supporting evidence from the systematic review and/or from other literature and sources (e.g., the expert panel).

# BAC K G R O U N D
A Palliative Approach to Care in the Last 12 Months of Life 6. Supporting Resources: Includes a list of relevant resources (e.g., websites, books and organizations) that support the recommendations. As there are numerous accessible palliative care and end-of-life care resources this section includes a sample published within the last five to six years and that aligns with the recommendations (with the exception of unique or seminal publications). Content listed in this section was not part of the systematic review and was not quality appraised. As such, the list is not exhaustive, and the inclusion of a resource in one of these lists does not imply an endorsement from RNAO.
Note: Palliative care and end-of-life care legislation can vary between jurisdictions. The supporting resources have been organized to identify resources found within Ontario and those that exist outside of the province.

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# Summary of Recommendations

# RECOMMENDATIONS STRENGTH OF THE RECOMMENDATION
Recommendation Question #1:
Should an interprofessional approach be recommended for the provision of care to adults in the last 12 months of life?
Outcomes: Outcomes: Person and family experience with care; effectiveness of provided care from the person and family perspective; access to care; coordination of care; transitions in care; effectiveness of provided care from the health provider perspective Recommendation 1 .1:
The expert panel recommends that health-service organizations implement an interprofessional model of care for the provision of palliative care and end-of-life care to persons and families .

# Strong Recommendation 1 .2:
The expert panel recommends that the interprofessional health team, in collaboration with the person and family, develop an individualized, person-centred plan of care and re-evaluate the plan of care based on the changing status, needs and preferences of the person .

# Strong
Recommendation Question #2:
What nurse-led interventions should be recommended for a palliative approach to the delivery of care in the last 12 months of life?
Outcomes: Outcomes: Support for spiritual care; support for emotional care; support for existential care; care in alignment with the person's wishes; culturally safe care; place of death
The following recommendations are applicable within the context of an interprofessional health team (see Recommendations 1 .1 and 1 .2) .
Recommendation 2 .1:
The expert panel recommends that nurses assess the cultural needs and values of persons and families .

# Strong Recommendation 2 .2:
The expert panel recommends that nurses perform ongoing assessments of persons and families for the following:
 values, beliefs, expectations and preferences about progressive life-limiting illness and death; and  preferred place of death .

# Strong BAC K G R O U N D
A Palliative Approach to Care in the Last 12 Months of Life Recommendation 2 .3:
The expert panel suggests that as part of a holistic assessment, nurses assess the spiritual, emotional and existential needs of persons and families, including:
 concerns about end of life; and  presence of spiritual, emotional and existential distress .

# Conditional Recommendation 2 .4:
The expert panel recommends that nurses address the person's and family's palliative care and end-of-life care expectations .

# Strong
Recommendation 2 .5:
The expert panel suggests that nurses provide opportunities for life reflection to persons and families .

# Conditional Recommendation 2 .6:
The expert panel recommends that nurses facilitate access to resources, space and services needed by persons and families for cultural, spiritual and/or religious practices .

# Strong Recommendation 2 .7:
The expert panel recommends that for persons who prefer to die at home, health-service organizations implement high-quality home and community care, which includes:
 access to after-hours services;  care coordination; and  support provided by an interprofessional health team .

# Strong
Recommendation Question #3: Should continuing education, targeted skills training and debriefing be recommended for supporting nurses and the interprofessional health team who provide care to persons in the last 12 months of life and their families?
Outcomes: Outcomes: Compassion fatigue; stress/distress; resilience
The following recommendations are applicable to nurses and the interprofessional health team who provide palliative care and end-of-life care to persons, their families and their caregivers . The expert panel recommends that health-service organizations provide education and skills training for nurses and the interprofessional health team related to self-care, including stress management and mitigation of compassion fatigue .

# Strong Recommendation 3 .2:
The expert panel recommends that health-service organizations provide time and resources for nurses and the interprofessional health team to engage in debriefing .

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A Palliative Approach to Care in the Last 12 Months of Life

# Best Practice Guideline Evaluation
As you implement the recommendations in this BPG, we ask you to consider how you will monitor and evaluate its implementation and impact.
The Donabedian model informs the development of indicators for evaluating quality health care. It includes three categories: structure, process and outcome (13).
 Structure describes the required attributes of the health system, health-service organization or academic institution to ensure quality care. It includes physical resources, human resources, and information and financial resources.
 Process examines the health activities being provided to, for and with persons or populations as part of the provision of quality care.
 Outcome analyzes the effect of quality care on the health status of persons and populations, health workforce, health-service organizations, academic institutions or health systems (13).
For additional information, please refer to the RNAO Toolkit: Implementation of Best Practice Guidelines, Second Edition (2012).
It is important to evaluate evidence-based practice changes when implementing a BPG. Tables 3 and 4 provide potential process and outcome measures to assess BPG success. Select the measures most relevant to the practice setting. The data repositories and indicator libraries available for palliative care and end-of-life care are outlined to support quality improvement and evaluation.
Table 3 supports evaluation of practice changes during implementation. The measures are directly associated with specific recommendation statements and support process improvement.   

# Stakeholder Acknowledgment
As a component of the BPG development process, feedback was obtained from participants across a wide range of health-service organizations, academic institutions, practice areas and sectors. Participants include nurses and other members of the interprofessional team, educators, students, and knowledgeable administrators. Stakeholders G representing diverse perspectives were also solicited for their feedback (see Appendix D). RNAO wishes to acknowledge the following individuals for their contribution in reviewing this BPG. Stakeholder reviewers have given consent to the publication of their names and relevant information in this BPG.

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# Background Context
What Are Palliative Care and End-of-life Care?
Palliative care refers to a philosophy and an approach to care. Palliative care aims to improve the quality of life for persons facing life-limiting illness and their families through the prevention and relief of suffering. It does this through the early identification, assessment and treatment of symptoms (4). Palliative care extends across the trajectory of life-limiting illness, including care at the point of diagnosis, during treatment and at the end of life, as well as grief and bereavement support (see Figure 1 for a visual depicting the palliative care trajectory). Note: Other models exist that provide visual depictions of palliative care. One example is The Bow Tie Model by Dr. Pippa Halwey. For more information, please visit +Site+Navigation/Home/ For+Professionals/For+Professionals/The+Exchange/Current/The+Bow+Tie+Model+of+21st+Century+Palliative+C are.aspx
According to the CHPCA, palliative care (also referred to as "hospice palliative care") is an approach to care that aims to do the following:
 Relieve suffering and improve the quality of living and dying.
 Address the physical, psychological, social, spiritual (existential) and practical issues of persons and their families, and their associated expectations, needs, hopes and fears.
 Prepare persons and their families for self-determined life closure and the dying process and help them manage it.
 Help families cope with loss and grief during the illness and bereavement experience.
 Treat all active issues, prevent new issues from occurring and promote opportunities for meaningful and valuable experiences, personal and spiritual growth, and self-actualization (10).

# BAC K G R O U N D
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Based on these key aims, the recommendations within this BPG focus on quality of life, emphasizing a holistic approach to care that incorporates the person's individuality and preferences, and that recognizes the person and family as the unit of care. Figure 2 identifies complex issues persons and their families may face when receiving palliative care, which are categorized into eight equally important domains (10). End-of-life care is a component of the palliative care trajectory, and it specifically refers to care for persons who are expected to die in the foreseeable future and their families (refer to Figure 1). It includes helping persons and families prepare for death, ensuring their comfort and supporting decision making that is consistent with the person's prognosis and goals of care (3).

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# Delivery of Palliative Care and End-of-life Care
The delivery of palliative care and end-of-life care is based on comprehensive and ongoing assessment of the needs of persons and families, along with their wishes and preferences (15). Depending on where the person is along the illness trajectory, considerable variability exists with respect to the type and level of care and the services that are required from health providers. See Figure 3 for a model depicting the illness trajectory, complexity of needs and level of service. For more information regarding the trajectories of illnesses, please refer to the Gold Standards Framework Proactive Identification Guidance, available at / uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf. The majority of persons and families will receive palliative care from primary care clinicians and non-specialist palliative care providers (Patient C in Figure 3). Complex issues facing persons and families may require the involvement of specialist palliative care teams, such that a consultation and shared care approach is used to assist non-specialist palliative care providers in delivering care (Patient B in Figure 3). In a smaller number of cases, complex palliative care needs may necessitate the transfer of care to specialist palliative care teams (Patient A in Figure 3).
As the needs of persons and families are multi-faceted, palliative and end-of-life care are most effective when delivered by an interprofessional health team that is knowledgeable and skilled in palliative care and end-of-life care (10). The interprofessional health team consists of regulated and unregulated care providers, as well as volunteers, family caregivers, and persons and their families.

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# Access to Palliative Care and End-of-life Care
Palliative care and end-of-life care are appropriate for any person and their family living with (or at risk of) developing a progressive life-limiting illness. In other words, persons facing any diagnosis-regardless of prognosis and age-who have unmet needs and/or expectations can have palliative care and end-of-life care when they are ready to accept it. It is important for persons to receive palliative care as early as possible along their illness trajectory. Compared to late palliative care initiation, early access to palliative care has been found to be associated with improved end-of-life outcomes and lower odds of using acute care services (22). Despite this, access to palliative care services is not equitable across Canada (16). For example, of the persons who died in Ontario in the 2014/15 calendar year, only 57 per cent received at least one palliative care service, while 40.5 per cent did not receive any palliative care services (17). Of those who did receive palliative care, the majority (60.6 per cent) only received care within the last one to two months of life (17). Across disease groups, a report from the Canadian Institute for Health Information (CIHI) found that persons with cancer are three times more likely to receive palliative care than others, and adults aged 45 to 74 years are more likely than younger adults and older adults to receive palliative care across most care settings (16).
A major barrier to access of palliative care and end-of-life care services is cost. For example, the average cost of endof-life care per person in the last year of life is greater than $50,000 in Ontario, with inpatient care and long-term care representing a substantial portion of total end-of-life care costs (23). For Ontarians receiving palliative care services within the home G , the total cost has been estimated to be approximately $25,000 per month, with $17,500 per month due to lost wages and leisure time for caregivers (17). Not surprisingly, these home-based palliative care services are less likely to be used by persons living in the poorest neighbourhoods compared to those living in the wealthiest neighbourhoods (17). Therefore, funding models to support equitable access to palliative care and end-of-life services are an important aspect of every health system and one that government and government agencies need to address.
Inequitable access to palliative care and end-of-life care services is perhaps most prominent for persons who are structurally vulnerable G (e.g., persons who are experiencing homelessness) who tend to have inequitable access due to social, economic and environmental factors (18). A systematic review found that barriers to providing care to persons experiencing homelessness and who were seriously ill included: a small social network and lack of support from family and friends, limited insight into their health, living on a "day-to-day" basis with end of life not being a priority, and the belief G that health providers do not have the knowledge and skill to meet their palliative and endof-life care needs (187). Although the recommendations in this BPG are clinically applicable to all populations, a fundamental barrier to their implementation is the inequitable access to palliative care and end-of-life care services across all populations. For that reason, awareness and capacity to provide care to diverse populations, inclusive of principles of culturally safe and trauma-informed approaches, remains a priority in palliative care and end-of-life care.
For more information regarding social determinants of health, please refer to the RNAO Social Determinants of Health Brochure: RNAO.ca/sites/rnao-ca/files/rnao_sdh_brochure_2013.pdf. For more information regarding Ontario's action plan for access to equitable palliative care, please refer to the Ontario Palliative Care Network Action Plan 1: 2017-2020: www.ontariopalliativecarenetwork.ca/sites/opcn/files/OPCNActionPlan1.pdf.

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# Psychosocial Needs of Health Providers
Health providers who work in palliative care and end-of-life care are often faced with highly emotional situations. When health providers regularly encounter pain, suffering, death and grief, this can manifest in compassion fatigue and stress (24,25). Compassion fatigue is a state of "physical and mental exhaustion and emotional withdrawal experienced by those that care for sick or traumatized people over an extended period of time" (26). Recent literature indicates that 52.55 per cent of nurses experience compassion fatigue (27).
Long-lasting compassion fatigue has been linked to negative outcomes at the individual and organizational levels. For the individual health provider, ongoing compassion fatigue may result in: increased fatigue; feelings of hopelessness, frustration and despair; negative impacts on personal relationships; and thoughts of leaving the profession (28,29). At the organizational level, compassion fatigue may result in high staff turnover rates and increased staff shortages (25,30). High turnover is linked to significant financial costs for the organization, and most importantly, to adverse patient outcomes (31,32).
In order to mitigate the negative consequences related to compassion fatigue and stress, strategies to develop resilience and self-care for health providers are required. Resilience refers to a person's ability to thrive in the face of stress and traumatic experiences (33). Increased resilience is associated with improved health, well-being and job satisfaction for health providers; by developing resilience and self-care strategies, they can proactively recognize and mitigate signs of compassion fatigue and stress (24). Health-service organizations also have a responsibility to create environments that promote resilience through interventions that focus on education and skill-building for self-care (24,34,35).

# Conclusion
This BPG provides evidence-based best practice recommendations for health-service organizations, nurses and members of the interprofessional health team to support adults (18 years and older) who are experiencing the last 12 months of progressive life-limiting illness, their families and their caregivers.

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life

# Recommendations

# RECOMMENDATION QUESTION #1:
Should an interprofessional approach be recommended for the provision of care to adults in the last 12 months of life?
Outcomes: Person and family experience with care; effectiveness of provided care from the person and family perspective; access to care; coordination of care; transitions in care; effectiveness of provided care from the health provider perspective RECOMMENDATION 1.1:
The expert panel recommends that health-service organizations implement an interprofessional model of care for the provision of palliative care and end-of-life care to persons and families.

# Strength of the recommendation: Strong

# Certainty of the evidence of effects: Low
Confidence in the evidence: Low

# Discussion of Evidence: Benefits and Harms
Within the literature, interprofessional models of care consisting of varying team compositions were explored within diverse health settings. An interprofessional model of care refers to a team of different health providers (regulated and unregulated) working together towards a common goal to meet the needs of a patient population. Within this model, team members divide the work based on their scope of practice, sharing information to support their respective work and coordinating processes and interventions to provide a number of services and programs (8). In palliative care and end-of-life care, the person and family are included as key members of the interprofessional health team.
Evidence suggests that interprofessional models of care may improve: (a) the effectiveness of care from the perspective of persons, families and health providers; (b) the experience that a person and their family have with care; and (c) the coordination of care.

# Effectiveness of Care from the Perspective of Persons, Families and Health Providers
The effectiveness of interprofessional models of care from the perspective of the person and/or their family has been reported in the literature. An interprofessional model of care has the potential to improve the experiences of care for persons and families through increased satisfaction and improved care (36). For example, patients at an interdisciplinary palliative care out-patient clinic felt that interprofessional care: (a) increased the frequency and timeliness of symptom assessments; (b) improved the person's understanding of medications, side effects and pain management; and (c) ultimately supported enhanced symptom management and care coordination G (37).

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life Evidence suggests that health providers also may find interprofessional models of care to be effective. For example, interprofessional health teams may support stronger relationships with the person and family, and they may aid in reducing power imbalances between the interprofessional health team, the person and their family (38). Health providers also report that interprofessional collaboration can promote greater productivity, flexibility and shared responsibility, enabling them to achieve the person's care goals (39). In one study, four health provider groups (physicians, nurses, social workers and spiritual care providers) felt positively about interprofessional collaboration and rated their hospice work environments as supportive. However, social workers reported feeling less valued and connected to other members of the interprofessional health team (38).

# Person and Family Experience with Care and Coordination of Care
Interprofessional models of care also may affect the experience that persons and families have with the care they receive. Interprofessional care may increase psychological support and support for daily living activities for the person while decreasing caregiver burden and anxiety (40). Persons and families also report increased satisfaction with care and improved quality of life when receiving care from a specialized out-patient palliative care team (40,41).
With respect to experiences with care and coordination of care, qualitative evidence suggests that persons with a progressive life-limiting illness and their families who are cared for by an interprofessional health team report: (a) improved continuity of care and holistic care; and (b) increased feelings of security, timely care and responsiveness of health providers when accommodating changing conditions (42).
Although there are findings to support the improved experiences of persons and families with care and the increased coordination of care that are linked to interprofessional models of care, one study demonstrated that communication with health providers may not be enhanced by an interprofessional model of care (40).

# Values and Preferences
An interprofessional model of care was positively received, both from the perspective of persons and from health providers (39)(40)(41). Health providers who engaged in interprofessional rounds for palliative care reported that the approach facilitated communication and added value to patient care without increasing burden (44).

# Health Equity
The expert panel acknowledged that across health-service organizations, there may be inequitable access to the health human resources required to implement interprofessional models of care in an effective way. In rural and remote areas, access to certain health provider groups is limited due to the lower number of health providers employed in these areas (45). As an alternative, the expert panel suggests that telemedicine can be used to support increased access to an interprofessional health team, including in rural and remote geographical areas. The authors of one study outlined the benefits of including a telephone service to increase accessibility to interprofessional models of care, particularly for individuals living in remote areas (37).

# Expert Panel Justification of Recommendation
The expert panel attributed value to the interprofessional model of care, wherein interprofessional health teams practice with a shared purpose to provide holistic person-and family-centered care. The expert panel determined that the benefits of interprofessional care outweighed the harms, and that persons experiencing the last 12 months of progressive life-limiting illness would value improvements in the effectiveness, coordination and experiences of

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life the care they received. Despite the fact that there was a low certainty of evidence and low confidence in the evidence, there were several benefits identified to having an interprofessional approach to care, and few harms were reported.
For that reason, the expert panel determined the strength of the recommendation to be strong.

# Practice Notes
 Interprofessional health teams vary in composition, depending on the health setting (e.g., hospice, acute care, home care or long-term care), so the exact composition of team members required for interprofessional palliative care and end-of-life care is context-dependent and based on the needs of the person receiving care and their family. Regardless, each team member's role should be clearly communicated within the interprofessional health team, as clarity of roles facilitates the provision of coordinated care (47).
 Within the research literature, interprofessional health teams who provide palliative care and end-of-life care services generally include a combination of regulated and unregulated health providers, such as:  (54).
 The expert panel further notes that nurse practitioners, volunteers, Indigenous spiritual/traditional healers, elders and medicine persons are key members of the interprofessional health team.
 The expert panel highlighted the importance of clear and ongoing communication between interprofessional health team members, the person and the family. Clear and ongoing communication promotes a mutual understanding of the person's goals of care and avoids potential distress resulting from persons and families having to repeat information to multiple interprofessional health team members.
 It is important for health-service organizations to provide access to and support the use of documentation systems that enable equal access to and timely sharing of information between interprofessional health team members.

# RECOMMENDATIONS
A The expert panel recommends that the interprofessional health team, in collaboration with the person and family, develop an individualized, person-centred plan of care and re-evaluate the plan of care based on the changing status, needs and preferences of the person.

# Strength of the recommendation: Strong

# Certainty of the evidence of effects: Low
Confidence in the evidence: Low

# Discussion of Evidence: Benefits and Harms
The evidence on the development of a plan of care G by the interprofessional health team varied with respect to team composition and health context. However, the literature generally demonstrated that the development of an individualized person-centred plan of care by the interprofessional health team-in collaboration with the person receiving care and their family-may improve transitions in care, coordination of care, access to care, and the experiences of care for persons and families.

# Transitions in Care and Coordination of Care
Care planning with an interprofessional health team can promote the provision of holistic care, because the perspectives gained from interprofessional health team discussions may be more comprehensive than independent provider assessments (50). Developing a plan of care with the interprofessional health team, the person receiving care and their family involves shared decision-making G and ongoing communication. This communication and collaboration improves transitions in care, including both the quality of a person's transition to end-of-life care and the transition from home care to an in-patient hospice setting (51,55). In one qualitative research G study, individualized plans of care were discussed with persons and their families during home visits prior to being reviewed at interprofessional health team meetings. Plans of care were subsequently modified based on the changing physical and psychological needs of the person and family. If care could not be provided in the home, and if hospice eligibility was met, the transition to a hospice setting was facilitated (51). In rural environments, care coordination was supported by members of the interprofessional health team, with health providers discussing their unique roles on the team to help ensure that persons with progressive life-limiting illness and their families received appropriate and comprehensive care (45).

# Experiences of Care for Persons and their Families, and Access to Care
Active involvement of the person and family in care planning with the interprofessional health team may facilitate positive person and family experiences, and it may increase satisfaction with care (48). For persons with early-stage cancer, for instance, evidence indicates that care planning with the interprofessional health team may improve the person's quality of life and spiritual well-being and reduce psychological distress (53). Furthermore, with regards to access to care, interprofessional care planning may increase the number of referrals to specialized services, including referrals to palliative care, supportive care, chaplaincy, nutrition and social work (53). Care planning with the person, family and interprofessional health team also may allow for discussion and acknowledgement of the person's preference for place of death and improve the person's emotional responses to dying (49,51). A reduction of pain experienced by the person also may occur (49).

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life Care planning with the interprofessional health team also may improve the family's experience with care received. For example, caregivers who are part of end-of-life discussions report increased satisfaction with care, and they are more receptive to bereavement visits and experience less distress during those visits (49). When families are included in the care planning process, family caregivers report improvements in their quality of life, a reduction in psychological distress and a reduction in caregiver burden (52).
Interestingly, one study found that caregivers who are not part of interprofessional care planning may have greater spiritual well-being than those who are part of the care planning. The authors of the study report that this may be due to the intervention being provided with insufficient frequency, and that minimal content related to spiritual wellbeing was discussed during the intervention (52).

# Values and Preferences
Persons value being involved in care planning, and because their family may represent a source of social support, both groups value the opportunity to be involved in decision-making (56).

# Health Equity
The expert panel recognizes that some persons receiving palliative care and end-of-life care may have reduced social and financial resources; this may influence individualized care planning and transitions in care (51). The expert panel also acknowledged that access to the resources required for an interprofessional approach to care planning may be limited in certain health-service organizations or geographical locations, which can negatively impact health equity. For example, one study found that when access to specific health providers was limited, functioning of the interprofessional health team and overall care delivery were affected (50).
In another study, providers in rural environments recognized their role in collaborating with one another to advocate for the needs of populations underserved by the health system. While meeting face-to-face with persons with progressive life-limiting illness and their families was valued, providers reported that opportunities and resources were not readily available to them to engage in interprofessional care planning in an effective manner (45).

# Expert Panel Justification of Recommendation
There were several benefits identified when the person and their family collaborated with the interprofessional health team in their care planning, and no harms were found. Despite the low certainty of evidence and low confidence in the evidence, the expert panel determined that persons and their families would value improvements in: (a) coordination of care, (b) transitions in care, (c) access to care, and (d) experiences with care. For that reason, the expert panel determined the strength of the recommendation to be strong.

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life

# Practice Notes
Implementation considerations from the expert panel:
 Early referrals to interprofessional palliative care teams, along with early conversations between persons with progressive life-limiting illness, families and the interprofessional health team are important in order to discuss preferences, values and plans of care. The importance of early conversations and care planning with the interprofessional health team, person and family is also echoed in the literature (53). If conversations with the person are initiated in the later stages of a person's illness, they may be too unwell to participate in discussions regarding their transitions in care (55).
 Plans of care should be modified in a timely manner based on the changing health status and the needs of the person and family. This will help to support coordination of care, transitions in care and positive person and family experiences.
 Documenting and sharing the plan of care between interprofessional health team members is important. Ongoing and frequent communication (in-person or through written or electronic documentation) between the interprofessional health team and the person and family is a facilitator to achieving the benefits of coordinated and collaborative care planning (47).
 In order to support coordination and continuity in care, interprofessional collaboration should exist both within and between health-service organizations when persons and families transition between settings. 

# RECOMMENDATION 2.1:
The expert panel recommends that nurses assess the cultural needs and values of persons and families.

# Strength of the recommendation: Strong
Confidence in the evidence: Low

# Discussion of Evidence: Benefits and Harms
Qualitative evidence indicates that assessing the cultural needs G and values of persons and families enables nurses to provide culturally safe palliative care and end-of-life care, bridge gaps in communication and gain an inclusive understanding of the person and family (19,57). In some cases, language barriers can make it difficult to understand a person's cultural beliefs, needs and values; this can potentially lead to gaps in communication, as persons and families are unable to express their needs and wishes and/or health providers have difficulty understanding them (57). Table 5 provides information from the literature on the components of cultural assessments and on strategies for conducting them.

# Values and Preferences
No literature was identified that reported on the values and preferences of persons, their families or their health providers with respect to assessing the cultural needs and values of persons and families.

# Health Equity
Incorporating a cultural assessment as part of a comprehensive assessment promotes inclusive care for all populations (19). When language barriers exist, access to high-quality translation services represents an important factor in effectively communicating with persons and families; however, not all health-service organizations have the funding and resources to implement translation services. It is important to note that translation is not interpretation: translation services that can interpret information, promote understanding and meet the individual needs of persons and families are required.

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life

# Expert Panel Justification of Recommendation
The expert panel attributed value to conducting cultural assessments so that care plans can be tailored to the person's needs and preferences. Moreover, the expert panel determined that persons would value even small improvements in their care if they received culturally safe care that was in alignment with their wishes. Therefore, despite the fact that there was low confidence in the evidence, the expert panel determined the strength of the recommendation to be strong.

# Practice Notes
 Organizational policies for health providers are required in order to facilitate culturally safe care in palliative care and end-of-life care (46).
 Nurses should regularly assess their knowledge level and ability to conduct an appropriate cultural assessment prior to doing so in clinical practice, and the expert panel highlights that trust must be established before conversations with persons and families occur. Furthermore, communication is central to culturally safe care, and nurses must avoid making assumptions about persons and families, regardless of their cultural, ethnic or spiritual background (46,61).
 The expert panel emphasized that culture is unique to each individual, and there are individual differences within the same cultural umbrella.
 While culture is defined broadly, evidence within the systematic review was not found specific to certain population groups. Research is required in these areas. Refer to Table 10 for research gaps and future implications. 

# Components of cultural assessments
Components within the research included:
 Exploring the person's family context, coping strategies, holistic needs, expression of emotions, meaning of behaviours and all dimensions of pain (57).
 Within the literature, nurses reported that because a person's experience of suffering is multidimensional, it was valuable to explore their experience from various domains in order for the person to feel truly understood (19).
Components identified by the expert panel:
 Asking persons and families if they have any religious or cultural concerns related to progressive life-limiting illness and death may assist in assessing the cultural needs and values of persons and families.
 For a subset of the population, culture and spirituality are intertwined; thus, acknowledging both domains during a cultural assessment may be warranted (see Recommendations 2.2 and 2.6).

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life

# Strategies for conducting cultural assessments
Strategies within the research included:
 Nurses observed persons and families to learn about care practices and inquired about practices that would typically be conducted at home (57).
 A cultural assessment may also involve the active involvement of family, including determining the family contact person, exploring factors of personal importance to the family and examining family communication (57).
Strategies identified by the expert panel:
 Cultural assessments should be implemented and completed as part of a holistic approach to care, as outlined in Figure 2 

# Discussion of Evidence: Benefits and Harms
The research evidence demonstrates the importance of nurses discussing with persons and their families their values, beliefs, expectations and preferences about their life-limiting illness, death and preferred place of death. Doing so will support future care planning and the person's ability to experience a death in alignment with their wishes.

# Values, Beliefs, Expectations and Preferences about Progressive Life-limiting Illness and Death
Qualitative evidence demonstrates that when nurses and other health providers discuss care preferences with persons and their families, it may promote the establishment of a trusting rapport between the nurse and patient, encourage open communication and allow them to identify areas in which coordination of care is required (62). Engaging and supporting the person to be involved actively in the decision-making process also can have psychological benefits for the person, including providing them with a sense of control and self-determination (62). In a study that evaluated a nurse practitioner-directed intervention that focused on the effect of exploring the values, beliefs, preferences and expectations of persons, the emotional well-being of persons at the end of life was found to improve; however, the intervention was not found to have an impact on their spiritual well-being (63).

# Preferred Place of Death
Examining a person's preferred place of death can promote a holistic approach to care (e.g., emotional and psychological) that extends beyond physical symptom management. Nurses within a qualitative study acknowledged that a person's preferred place of death may change over time or may not be feasible; however, initiating the conversation with the person is viewed as an important first step in assessing whether the person's request is attainable (62). Potential issues may arise if a person's care preferences are not feasible; this can result in negative emotional outcomes for persons, families and health providers (62).

# Values and Preferences
Changes in care preferences are occasionally associated with alterations in a person's health condition, but the experience and direction of these changes are unique to the person receiving the care (67). Potential shifts in a person's care preferences indicate a need for ongoing assessment of their care preferences as end of life approaches (68).

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life
One study noted that discussing the topic of a person's preferred place of death too early, particularly if the person is not yet aware of their proximity to death, may be perceived as unsupportive and uncaring (62). When persons do not wish to engage in discussion on topics such as preferred place of death, the topic can be revisited at a more appropriate time, depending on the person's needs and wishes (62). The expert panel acknowledged that the interprofessional health team should explore the person's understanding of their illness early in the palliative care trajectory, before conversations are initiated regarding a person's preferred place of death.

# Health Equity
A person's decision with regards to preferred place of death is multi-faceted. The expert panel highlights that a person's choice for preferred place of death may be influenced by access to supportive care providers, living in rural or remote areas, complications of illness, access to supplies and medication, and caregiver burnout G . These factors can ultimately impact health equity.
Unfortunately, although the evidence shows that most people prefer to die at home, over 60 per cent of Canadians continue to die in hospitals, and only 15 per cent receive palliative home care services in the last month of life (16,64,65).

# Expert Panel Justification of Recommendation
Despite the very low certainty of the evidence of effects and the low confidence in the evidence, the expert panel determined that the benefits outweigh the harms when it comes to assessing the preferred place of death and the values, beliefs, expectations and preferences of a person and their family. The expert panel also believes that persons would value improvements in spiritual, emotional, existential and culturally safe care, and that they would appreciate receiving care in alignment with their wishes. For that reason, the panel determined the strength of the recommendation to be strong.

# Practice Notes
 Persons with progressive life-limiting illness experience changes regarding expectations for their life and future as they come to terms with the nature of their illness (66). The expert panel emphasized that the conversation about preferred place of death is dynamic, and that assessment must continuously occur as the person's condition and needs change (i.e., it is not a static situation). Ongoing assessments reflect that status and needs of the person, and thus may include re-assessments as well as new assessments.
 The expert panel also highlights the importance of considering the family and substitute decision-makers G in discussions regarding preferred place of death.
 The expert panel emphasized that communicating assessments to the interprofessional health team is important. It is also important to document the person's preferences in their plan of care and to re-assess as changes occur; this will allow attention to be paid to the person's care expectations throughout the trajectory of their illness (62).
 Refer to Appendix M for resources related to advance care planning and goals of care.

# RECOMMENDATIONS
A 

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life

# RECOMMENDATION 2.3:
The expert panel suggests that as part of a holistic assessment, nurses assess the spiritual, emotional and existential needs of persons and families, including:
 concerns about end of life; and  presence of spiritual, emotional and existential distress.

# Strength of the recommendation: Conditional

# Certainty of the evidence of effects: Very low
Confidence in the evidence: Low

# Discussion of Evidence: Benefits and Harms
Assessing the spiritual, emotional and existential needs of persons and families represents one important aspect of person-and family-centered holistic care. Refer to Table 6 (below) for strategies identified within the literature to assess the spiritual, emotional and existential needs of the person and their family.

# Assessment of Spiritual, Emotional and Existential Needs
When assessing for spiritual, emotional and existential needs, health providers asked questions pertaining to a range of topics, including the following:
 concerns, hopes, dreams and wishes;
 feelings of peace;
 impact of illness on family;
 whether the person is part of a spiritual or religious community; and  meaning behind feelings of sadness, guilt or defeat (69).
Evidence suggests that persons and families may respond positively to nurse-led spiritual assessments. In a study by Taylor & Brander (2013), persons were given a 21-item spiritual assessment questionnaire to ascertain their comfort level when being asked questions pertaining to spirituality. Approximately 25 per cent of the respondents "liked to be asked", approximately 50 per cent were "okay" with being asked, and approximately 25 per cent "did not want to be asked" questions pertaining to spirituality (70). Persons were also receptive to questions about support systems, because it allowed them to reflect on what was helpful to them during difficult times in the past, and it prompted them to recall positive aspects of their lives (70). Moreover, when nurses supported persons to share their feelings, persons were able to gain trust in the nursing care they received (71). However, nurses also reported instances in which the family was not psychologically prepared to discuss loss; this in turn caused distress for the person, their family and the nurse (69).

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life

# Presence of Spiritual, Emotional and Existential Distress
In a qualitative study, hospice nurses emphasized the importance of identifying spiritual distress in persons with life-limiting progressive illness, and they recognized this as an experience unique to each individual (72). Moreover, these domains can be heavily intertwined with a person's physical health, such that nurses in one study assessed for existential and spiritual distress during their assessment of the person's total pain experience (73). When hospice nurses recognize and provide the appropriate care to persons in spiritual distress, nurse-person relationships may be positively impacted. For example, when persons were actively in distress, hospice nurses used open-ended questions to explore the person's feelings and provide them with the opportunity to express their emotions, if they desired. Thus, hospice nurses who engaged in conversation with the person in a professional manner allowed persons to express their emotions, obtain needed support and alleviate emotional suffering (74).

# Values and Preferences
Variability in preferences regarding spiritual, emotional and existential assessments was found in the literature. In one study, some persons did not wish to be asked about their involvement in a religious community, and they felt that it was inappropriate for nurses to ask questions about their spiritual beliefs (70). Some persons and families stated that they preferred their spiritual assessment to be conducted first by spiritual care experts, followed by counselors and then nurses (70).

# Health Equity
The expert panel acknowledged that health equity may vary due to issues related to resources and staffing, in addition to provider education and training in how to conduct spiritual, emotional and existential assessments for persons with a life-limiting progressive illness.

# Expert Panel Justification of Recommendation
There were both benefits and harms identified for completing spiritual, emotional and existential assessments. The expert panel noted that although conducting these assessments is valuable, not all individuals may wish to answer questions or partake in assessments of this nature. Responding to cues (verbal and non-verbal) and recognizing the appropriateness of such assessments for the person and their family is integral to quality holistic care. Given the very low certainty of the evidence of effects, the low confidence in the evidence, and the variability in how persons value these assessments, the expert panel determined the strength of the recommendation to be conditional.

# Practice Notes
 The expert panel emphasized that nurses should reflect on their knowledge level, comfort and ability to conduct appropriate spiritual, emotional and existential assessments prior to doing so, because when such assessments are done incorrectly-or if the nurse is not prepared to deal with the outcomes of the assessment-they can be harmful to persons and their families.
 Organizations can support health providers to engage in these assessments by providing appropriate training so that they can gain an understanding of the person and more appropriately assess and explore their needs (75).
 Assessments should be communicated to the interprofessional health team and documented. Moreover, the expert panel highlighted the importance of nurses recognizing when the complexity of the needs of the person and their family exceeds their knowledge, training and scope of practice. In these instances, interprofessional approaches may be necessary to meet the needs of persons and families, and nurses should seek the involvement of appropriate interprofessional health team members in a timely manner (76). Interprofessional health team support has been demonstrated to assist in addressing spiritual needs, particularly when health providers are not comfortable addressing spiritual care needs when it is beyond their knowledge or skill (76).

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life  The expert panel identified that home care nurses must know the supports available within the community in order to connect persons and families to appropriate resources.
 The expert panel emphasizes that the physical and psychosocial domains of health are interrelated. Thus, when physical incapacity is an issue, the person may experience emotional distress related to their loss of independence and functional ability. Similarly, while pain control represents a central aspect of palliative care and end-of-life care, pain is a multidimensional concept: the "total pain" a person experiences is influenced by physical, psychological, social and spiritual factors (77). All of these factors are interrelated and must be considered in unison to gain an accurate understanding of the person (77).
 Refer to Appendix G for a list of assessment tools that explore different domains of health and illness as part of a holistic approach to care.  Once trust and rapport are established, utilizing non-intrusive ways to explore the spiritual or existential beliefs of persons in their care (73).
 Recognizing the importance of reading body language and non-verbal cues as part of the assessment, and the importance of being mindful of their own non-verbal behaviour during the process (69).
 Assessments also involve the needs of the family, including coping, communication and family dynamics (73).
 An assessment of a person's spiritual, emotional and existential preferences needs to be initiated early in a person's illness trajectory. This provides the interprofessional health team with the means to ensure that the person's preferences are honoured at the time of death (78).

# Areas explored through assessment questions
 Feelings of peace.
 The impact of illness on family.
 Whether the person is part of a spiritual or religious community.
 The meaning behind feelings of sadness, guilt or defeat.
 Problems, concerns, hopes, dreams and wishes (69).

# Signs of spiritual distress
 Some signs of spiritual distress for a person at the end of life, as identified within the research, include the following:
 questioning the meaning of life;
 changes in behaviour, such as withdrawing or distancing oneself from others; and  physical symptoms, such as pain (72).

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life  Report addressing the current landscape of research regarding spirituality and palliative care.
 Identifies next steps to advance the field.

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life

# RECOMMENDATION 2.4:
The expert panel recommends that nurses address the person's and family's palliative care and end-of-life care expectations.

# Strength of the recommendation: Strong
Confidence in the evidence: Low

# Discussion of Evidence: Benefits and Harms
Generally, evidence from qualitative literature identifies that addressing palliative care and end-of-life care expectations with persons and their families may promote supportive care and care that is delivered in harmony with the person's wishes (62,69,79). To address expectations in a supportive way, nurses-in collaboration with the interprofessional health team-need to ensure that persons have realistic expectations about the care that can be provided, the type of assistance that can be given and the amount of time that can be dedicated in order to prevent feelings of disappointment (62,69). Addressing expectations also involved preparing the person for anticipated care and exploring the person's and family's current understanding of palliative care (79).
Harmony between persons and their families on palliative care and end-of-life care issues may improve quality care and facilitate a comfortable death for the person (79). Moreover, nurses provided continuous support to family members by engaging them throughout the care process and offering appropriate support in the face of escalating family stress, particularly if they were having difficulties with coping (79). When nurses were not able to manage expectations, the nursing relationship was compromised, nurses were not able to provide quality care and the person may not have experienced a comfortable death (79).

# Values and Preferences
Persons value supportive discussions, opportunities to discuss questions they may have and receiving information from health providers in order to obtain information on their condition and treatment possibilities (66).

# Health Equity
The expert panel acknowledged that health equity may vary due to issues related to resources and staffing, and differences in provider education and training in how to assess expectations of palliative care and end-of-life care.
Recognition of how social determinants of health impact access to and provision of palliative care and end-of-life care must be considered in order to support access to care for those who are structurally vulnerable.

# Expert Panel Justification of Recommendation
Several benefits were identified as a result of addressing the end-of-life care expectations of the person and their family. Despite low confidence in the evidence, the expert panel attributed value to addressing the expectations of the person and their family. For that reason, the expert panel determined the strength of the recommendation to be strong.

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life

# Practice Notes
 Nurses should assess the readiness of persons to discuss their expectations for palliative care and end-of-life care and their understanding of their illness. The expert panel emphasized that conversations should occur at an appropriate time (i.e., when persons are ready), and that it should be early in the care process. When nurses and the interprofessional health team facilitate early conversations, it promotes empowerment and provides an opportunity for the person to make decisions while mentally capable of doing so (i.e., as opposed to decisions being made by a substitute decision-maker if conversations are initiated when the person is no longer mentally capable).
 The expert panel emphasized that past experiences with death and past coping strategies may impact palliative care and end-of-life care expectations. When nurses and the interprofessional health team engage in dialogue with the person and family on their care expectations, the person's values and preferences can be thoughtfully reflected in the care plan.
 Communication with persons needs to be flexible to meet their individual needs.
 It is important to note that consent for treatment(s) within the plan of care is given by the person receiving the care or, if the person is incapable, by their substitute decision-maker in accordance with the person's goals and wishes.
 Strategies identified in the literature that nurses can use to achieve agreement between persons and their families include the following:
 providing ongoing support to ensure that families remain engaged throughout the care process;
 accommodating individuality and each family's unique ways of caring;
 preparing families for forthcoming care; and
 being responsive to individual perspectives and remaining flexible regarding family practices in order to facilitate positive engagement with persons and families (79).

# Supporting Resources

# RESOURCE DESCRIPTION ONTARIO-BASED RESOURCES
Caregiver tips for coping with advancing illnesses.
In  Guidance regarding end-of-life conversations.

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life

# RECOMMENDATION 2.5:
The expert panel suggests that nurses provide opportunities for life reflection to persons and families.

# Strength of the recommendation: Conditional

# Certainty of the evidence of effects: Low
Confidence in the evidence: Low

# Discussion of Evidence: Benefits and Harms
Various strategies to enable persons to engage in reflection were explored in the research, including both structured and unstructured approaches. For the purposes of this BPG, "structured approaches" are organized or formal interventions with a specific set of components, while "unstructured approaches" may involve more flexible, natural and spontaneous conversations to explore life reflection. Due to the limited research on structured life reflection interventions, a specific intervention program cannot be recommended at this time (80).
In general, life reflection may support a person-centred approach to care by acknowledging individuality, spirituality, fear and distress in order for persons to find meaning and acceptance and to alleviate their spiritual distress (69,72,78,80). Regardless of the type of strategy used for life reflection, nurses can provide opportunities for reflection to persons living with progressive life-limiting illness and their families.

# Unstructured Reflection
In qualitative studies, nurses reported that life reflection-if desired by persons with progressive life-limiting illnessallowed persons to experience a more peaceful death in comparison to those who did not wish to reflect and share (73). Providing opportunities for reflection allowed persons to (a) work through fear and regret, (b) reduce their suffering and (c) find meaning in their lives. In one study, when persons demonstrated fear about death, nurses acknowledged their feelings which eased the person's distress and allowed them to accept what was happening (72). Refer to the Practice Notes section for this recommendation (found below) for strategies identified within the literature that health providers used to engage in reflection conversations.

# Structured Reflection
A structured approach to life reflection was generally found to improve spiritual well-being in persons at the end of life, and to demonstrate improvement with regards to existential distress scores and quality of life (81,82). One study had a high attrition rate due to death, deterioration of condition or refusal to participate in the intervention (82). In another study, some persons found the questions asked as part of the intervention to be upsetting because it emphasized the limited time they had left to live (81). See Table 7 for more information about the two structured interventions evaluated: Outlook and The Meaning of Life Intervention.

# Values and Preferences
Persons reported that the structured intervention brought meaning to their lives; however, some found the questions asked as part of the intervention to be difficult to answer or not relevant to their stage of life (81).

# RECOMMENDATIONS
A Palliative Approach to Care in the Last 12 Months of Life
In a 2014 study by Keall et al., nurses reported that persons often wanted to share their story because it humanized them and allowed them to share their wisdom and legacy. Nurses viewed structured intervention positively because it provided a framework for care and supported therapeutic relationships. Nurses also reported that a structured intervention contributed to the holistic care of persons, and that it helped persons identify value in their lives (83).

# Health Equity
The expert panel acknowledged that not all health-service organizations have adequate resources (e.g., staff, volunteers, time and training) to support health providers to engage in conversations about life experiences.

# Expert Panel Justification of Recommendation
There were both benefits and harms identified for providing opportunities for life reflection. The expert panel felt that the benefits outweighed the harms with regards to the identified outcomes for most people; however, they emphasized that life reflection may not be appropriate for everyone. For some persons, life reflection may be detrimental (e.g., distressing or traumatizing) for their psychological and emotional well-being, especially if they do not wish to engage in the life reflection process or do not find meaning in it. Given the low certainty of evidence of effects, the low confidence in the evidence, and the variability in how persons value opportunities to reflect on their lives, the expert panel determined the strength of the recommendation to be conditional.

# Practice Notes
 The expert panel emphasized that in order to provide effective support to persons with progressive life-limiting illness and their families-and to provide opportunities for reflection-nurses and other health providers must first be provided with training to enhance their practice with the knowledge and skills needed to approach life reflection conversations. This includes trauma-informed approaches and recognizing when such conversations may not be appropriate. See Appendix B for a resource related to trauma-informed approaches.
 A person-and family-centred approach to life reflection includes providing flexibility, both in the timing of the dialogue and in the number of sessions offered (81). For instance, life reflection should not be introduced immediately after the diagnosis of a progressive life-limiting illness because time is required for a person to process the information and adapt. The authors of one review study also suggest that life reflection programs remain brief in duration due to the shortened life expectancy of persons at the end of life (80).
 Strategies identified within the literature that were used by health providers to engage in life reflection conversations with persons with progressive life-limiting illness included the following:
 spending time with persons in a non-judgemental manner;
 establishing rapport and trust with the person (72, 78);