Abstract
Objective To explore what is known about end-of-life (EOL) conversations with frail older adults across all settings including primary care in Canada, and to understand the barriers to, and recommendations for, EOL conversations.
Data sources Comprehensive searches were conducted in CINAHL (EBSCO), Embase (Ovid), MEDLINE (Ovid), AgeLine (EBSCO), Sociological Abstracts (ProQuest), and Applied Social Sciences Index and Abstracts (ProQuest). Searches used text words and subject headings (eg, MeSH, Emtree) related to 3 concepts: frailty, Canada, and EOL conversations.
Study selection Twenty-one English-language articles were selected (ie, 4 reviews, 10 commentaries, 3 quantitative studies, 3 qualitative studies, 1 mixed-methods study) that included information about EOL conversations with frail older adults in the Canadian health care context.
Synthesis In terms of having EOL conversations with frail older adults, this study found that many clinicians do not often and adequately discuss frailty and impending death with their older patients. Moreover, patients and their care partners do not have enough knowledge about frailty and death to make informed EOL decisions, leading to patients choosing more aggressive therapies instead of care focused on symptom management. In terms of barriers to EOL discussions, common barriers included a lack of trust between clinician and patient, inadequate EOL training for clinicians, and ineffective clinician communication with patients and families. Recommendations for improving EOL conversations include regular screening for frailty to prompt conversations about care and the use of an interprofessional approach.
Conclusion More empirical research is needed that uses exploratory methods to shed light on the contextual factors that may act as a barrier to EOL conversations. More research is also needed on the roles and responsibilities of interprofessional teams in screening for frailty and engaging in EOL conversations. Moreover, there is a need to better understand how frail older patients and their families want EOL conversations to unfold and what best facilitates these conversations.
There is no one definition of frailty within biomedicine.1 However, there is consensus that frailty is a complex chronic condition where patients experience multimorbidity (having more than 1 chronic illness), have a decreased ability to engage independently in activities of daily living, and have an increased risk of morbidity and mortality.2-5 Canada’s population is aging,6 which also means that the incidence of frailty is increasing. Frailty affects approximately 16% of those aged 65 to 74, along with 29% of those aged 75 to 84, and 52% of those aged 85 or older.7 Compared with non-frail older adults with multimorbidity, frail older adults have an increased risk of sudden decline and death; thus, end-of-life (EOL) conversations with this population are crucial.8
End-of-life conversations include advance care planning (ACP), goals-of-care discussions, and health care consent.9 Advance care planning elicits patients’ values and preferences for future care to ensure that substitute decision makers (SDMs) are prepared to make treatment decisions on behalf of patients if they are called on to do so.9,10 Discussions about goals of care and health care consent relate to the current clinical context.9 Goals-of-care discussions reassess patients’ goals and prepare them for decision making.9 Health care consent discussions are used to obtain informed consent from a capable person for any care and treatment, as well as withdrawal of treatment.9,11
Palliative care experts advise engaging in EOL conversations early in the course of serious illness10 and suggest that primary care clinicians may be best suited to facilitate EOL conversations with frail older adults because they are most involved in the care of their older adult patients and often have long-term trusting relationships.12,13 However, despite 30 years of research, a gap between research and practice persists,14 and these conversations are often avoided or only occur when death is imminent.10,15-17
When EOL conversations are avoided, it is likely that older adults will receive prolonged curative therapies,10,18 will experience physical distress,14,19 will have worsened quality of life,20 and will have technologically mediated deaths.17 This experience is associated with increased depression in bereaved care partners,20 and distress, self-blame, failure, guilt, and hopelessness in clinicians.21-23 Unfortunately, little research has been conducted on EOL conversations with frail older adults, especially in primary care, making it challenging to understand the values and preferences of frail older adults and care partners, and how clinicians can best engage in this important clinical practice.
The first step in improving care and creating a system that uses its limited resources to best support frail older adults is to assess what is known about when and how EOL conversations are conducted in our unique health care system. To do this, we undertook a rapid scoping review of the Canadian literature and examined the extent, range, and nature of evidence in this understudied area.24 The aim was to answer the question, “What is known about having EOL conversations with frail older adults in Canada?” Secondary questions included, “What do we know about this practice within primary care?”; “What are the barriers to EOL conversations?”; and “What is recommended for improving these EOL conversations?” The review was limited to Canada in the interest of feasibility and to address the context of EOL conversations within the publicly funded Canadian health care system.
METHODS
This rapid scoping review followed Arksey and O’Malley’s framework.24 The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) extension for scoping reviews was followed to promote transparency and consistency.25 However, because of limited time and budget,24 we drew on rapid scoping review methods in which only 1 reviewer screened full texts.26
Data sources
This scoping review was performed with the guidance of a research librarian at the University Health Network in Toronto, Ont, from November 2018 to January 2019. Comprehensive searches were conducted in CINAHL (EBSCO), Embase (Ovid), MEDLINE (Ovid), AgeLine (EBSCO), Sociological Abstracts (ProQuest), and Applied Social Sciences Index and Abstracts (ProQuest). Search strategies included the use of text words and subject headings (eg, MeSH, Emtree) related to 3 concepts: frailty, Canada, and EOL conversations. The search narrative and MEDLINE search strategy are found in Appendix A, available from CFPlus.*
Study selection
Study selection was based on relevance to the aim of the review.24 One reviewer (C.C.) applied the agreed-upon inclusion and exclusion criteria to all the citations (Figure 1). If the citation appeared to fit the research question, the full text was reviewed using the same criteria.24 Reference lists of the included articles were also reviewed to identify additional references.
Synthesis
Data were extracted from articles using a table with headings related to questions guiding this review. The methodology, setting, population, knowledge about EOL conversations, relevance to primary care, barriers, and proposed solutions were captured from each article (Table 1, available from CFPlus*). We then thematically organized the literature to examine the common themes related to engaging in EOL conversations with frail older adults in Canada.
SYNTHESIS
This review identified 191 papers. After the screening process, 21 articles fit the eligibility criteria and were included in this review (Figure 1). The 21 articles reported findings using various methods. Four articles reported findings from reviews of the literature.27-30 Ten articles were commentaries.3,4,8,31-37 Three articles reported findings from quantitative studies.38-40 Three articles reported findings from qualitative studies.41-43 One article reported findings from a mixed-methods study.44 Only 3 of the eligible articles in this review explicitly focused on primary care: these included a commentary,37 a literature review,30 and a mixed-methods study.44 Among the 21 articles, 4 mentioned primary care4,8,27,42 and 6 reported findings that were applicable to primary care settings.3,28,29,32,34,39
Although assessing the quality of the studies is outside the scope of this review framework,24 it is important to note that most of the data in this review are from commentaries and survey data. Data collected from surveys can effectively test hypotheses and establish some statistical conclusions.45 However, when little is known about a topic, this type of research can be premature as it should be preceded by in-depth explorations that identify themes, which can then guide more focused research studies.45 Furthermore, as a result of the current emphasis on opinion pieces in the literature, there is inadequate information to inform practice.
What is known about having EOL conversations with frail older adults?
Lack of routine assessment of frailty and EOL preferences. Most of the literature in this review states that clinicians often do not adequately discuss frailty and impending death with frail older adults.3,28,34,37,39,43 In many settings, frailty is not routinely measured and therefore the actual risk of morbidity and mortality is unknown and not communicated to patients or family members.3,4,27-30,33,35,39,42 Additionally, our review suggests that much of the medical care for frail older adults is not based on patients’ wishes and preferences since they have either never been asked to express these28,33,40-42 or their wishes have not been recorded in their chart.40-42 The literature identifies this as a concerning gap in practice given the widespread consensus that medical care should be centred on patients’ wishes and preferences.4,8,28,31,32-34,41,42,44
Lack of patient knowledge to make informed EOL decisions. The literature also states that frail older adults and their care partners often do not make informed health care decisions because they lack sufficient understanding about their current health status, the risks of treatments, and their underlying side effects, benefits, and alternatives.4,8,28,31-34,41,42,44 This lack of knowledge may contribute to the ongoing trend where frail older adults, care partners, and clinicians choose or recommend more aggressive therapies such as the use of invasive ventilation, dialysis,27,40 cardiopulmonary resuscitation,34 implantation of a defibrillator,29 and certain surgeries,35 which often do not extend life for these patients but can lead to technologically mediated deaths or further decline.3,4,27,29,33-35,37,40,44
Move to receive “appropriate” medical care. The literature suggests that when a patient is frail, many invasive and lifesaving therapies are inappropriate because they can potentially harm the patient and lower their quality of life.4,27,33,37,40-42,44 The argument is that if frail older adults and care partners knew more about frailty and the harm of invasive treatments, they would choose only care focused on symptom management.4,8,27,31,33,37,41,42 That EOL conversations rarely occur is predominantly framed as an issue of autonomy and informed consent. The assumption is that patients who are informed and can make autonomous decisions about their care, or who have well-informed care partners, are more likely to receive “appropriate” care4,31,37,38 and experience a “good” death.8,27,28,37,38,41
Primary care settings
Despite the prevalence of frailty as a complex chronic condition where most people receive care in the community, only 3 articles explicitly focused on primary care,30,37,44 with another 4 articles providing recommendations for primary care clinicians.4,8,27,42 This literature consistently says interprofessional primary care teams are well positioned to assess and manage frailty, and yet in practice this is generally not done.4,8,27,30,37,42 Several articles call for improved frailty screening,37 with 2 discussing the importance of finding the right frailty screening tool in order to improve screening practices.27,30
Regarding EOL conversations, 1 study measured rates of informed consent and ACP. The researchers found that few frail older adults believed they had received sufficient information about what to expect with their condition. However, many had an SDM who they believed would make the right medical decisions for them.44 The literature recommends that primary care clinicians provide better education about illness trajectories, help patients make decisions in the context of frailty, ask about and document ACP, and ensure decisions are guided by patient values.30,37,44 Across this literature there was a lack of detailed discussion about the challenges of EOL conversations and the contexts or factors that support these critical conversations.
Barriers to EOL discussions with frail older adults
Common barriers to EOL conversations across health care settings include the lack of a trusting relationship between patients and clinicians,28,32,37,41 inadequate training of clinicians to have these conversations,8,27,31,41-43 clinical uncertainty and difficulty in prognosticating,3,4,8,27,31,43 ineffective communication with patients and families about illnesses and treatments,8,31,37,41,42,44 and the difficulty clinicians and patients have discussing dying and death.28,31,42,43 Other factors discussed, but with less consensus, include those related to clinicians’ beliefs and practices (eg, inadequate understanding of consent laws31,32 and feeling obligated to offer treatment31,34), and systemic barriers (eg, a lack of time41 and appropriate billing codes8).
Recommendations for improving EOL conversations
Most of the literature suggests that improving the informed consent process might raise rates of EOL conversations. Many articles stress the responsibility of clinicians to inform frail older adults about expected survival, disease trajectories, quality of life on treatment regimens, and alternatives to conventional treatments, and to provide clear recommendations.3,4,8,27,28,31,32,34,35,42 This literature emphasizes that regular screening for frailty is needed before clinicians can inform older adults of the risks and benefits of treatments.3,4,27,29,30,32,33,35,40,42
Most articles suggest that comprehensive and routine screening for frailty should trigger important conversations about goals of care that lead to the creation of care plans that best meet patients’ goals.3,4,8,27,29,30,34-37,42 An interprofessional approach is recommended while regularly screening for frailty and engaging patients in discussing goals of care and ACP.8,27,29,30,37,42 Specific roles for the interprofessional team were not discussed,29,30,37,42 although 1 article recommended that nurses, occupational therapists, and physical therapists help screen for frailty.27
DISCUSSION
The results of this scoping review indicate a paucity of high-quality research in this field. Specifically, little is known about EOL conversations with frail older adults in primary care and how interprofessional teams work together to have EOL conversations with this population. In light of this, comparison with other systems is difficult and it is not possible to import the findings from other jurisdictions into Canada given the way primary care and family medicine are configured. Despite this, there is an emerging consensus about key elements in the assessment and management of frailty and EOL conversations.
Our review highlights similarities across the literature regarding how low initiation of EOL conversations with frail older adults is intimately tied to a lack of frailty screening. This creates a knowledge gap about the risks and benefits of treatments in the context of frailty, making informed consent difficult to implement. When this population lacks information about frailty they may be more likely to choose invasive tests and treatments.
Our review also highlights some of the challenges that must be addressed in order to expand EOL conversations. To increase routine screening of frailty across clinical settings, the Canadian Frailty Network recommends clinicians use opportunistic screening to assess frailty in older adults with the explanation that prespecified screening criteria differ in each setting, as do the tools used to measure frailty.46 British and Asia-Pacific guidelines are consistent with this recommendation, and add that information gained in frailty assessments should be communicated to patients and their SDMs to inform recommendations and health care decisions.47,48
In Canada, family physicians are encouraged to build the Patient’s Medical Home, which provides a comfortable place for patients to present and discuss medical concerns.49 To ensure the Patient’s Medical Home meets the needs of frail older adults, this review and other literature suggest that interprofessional primary care teams should be created and supported. These teams could begin to routinely assess frailty and couple this with EOL conversations.3,42,50 A challenge with routine screening for frailty in primary care is the lack of consensus on which screening tool to use and when assessment should happen and by whom.2,51 A recent review lists many types of assessment tools suitable for primary care that take less than 5 minutes to complete.2
The best practice for informed consent involves a medical-legal definition11; however, the results from this review suggest there are multiple, intersecting factors that shape whether the plan of care aligns with patients’ genuine goals. In many practice settings, informed consent is viewed as securing a signature on a page31 and as a “bureaucratic legalism” rather than as a critical part of ensuring care aligns with patient goals.52 Based on the literature in this review, it is recommended that clinicians across settings assess their current approach to obtaining informed consent. They should also work to improve the health literacy of frail older patients and their care partners to ensure they have the understanding needed to engage in informed decision making. Engagement in informed decision making is important, as studies show that although many frail older adults receive aggressive treatments until EOL, many would prefer lower-intensity interventions focused on comfort.53 Centring informed decision making around frailty may lead frail older adults to better understand the harm of invasive treatments and instead choose care focused on symptom management. However, more research is needed to examine the outcomes of focusing on frailty in this way.
In the immediate term, clinicians can start to develop competency in EOL conversations, specifically about how to discuss uncertainty around prognostic outcomes. Experts advise that this communication skill be considered a medical intervention that is as important as any other medical procedure.8 Literature suggests that the Speak Up campaign and the Palliative and Therapeutic Harmonization model can be used to guide these conversations.50,54 A reflective practice that explores clinicians’ personal values and beliefs about aging, dying, and death and how this affects their practices is also valuable.55,56
Limitations
Several limitations of this review are inclusion of only English-language texts, having a single reviewer screening full texts, not hand-searching key journals, a lack of contact with experts to find additional studies, and not assessing the quality of the studies.
Conclusion
This rapid scoping review documents the paucity of in-depth studies that seek to understand EOL conversations with frail older adults in Canada. More empirical research is needed that uses exploratory methods such as qualitative inquiry, which can shed light on the contextual factors that may act as a barrier to EOL conversations. More research is also needed on the roles and responsibilities of interprofessional teams, including primary care clinicians, in screening for frailty and engaging in EOL conversations. Moreover, there is a need to better understand how frail older patients and their families want EOL conversations to unfold and what best facilitates these conversations. This knowledge is critical for the development of targeted interventions to improve practice.
Acknowledgment
Funding for this study was provided through a doctoral award from the Canadian Institutes of Health Research.
Notes
Editor’s key points
▸ Many frail older adults and their care partners are unable to make informed health care decisions because they lack sufficient understanding about their current health status. Literature suggests that if frail older adults knew more about frailty and the harm of invasive treatments, they would choose only care focused on symptom management.
▸ Screening for frailty should occur across health care settings so patients and clinicians have important clinical information about the risks and benefits of treatment options.
▸ Screening for frailty should trigger important conversations about trajectories of decline and end-of-life conversations, especially in primary care where there are often long-term trusting relationships between patients and clinicians.
▸ More empirical research is needed that uses exploratory methods such as qualitative inquiry, which can shed light on the contextual factors that may act as a barrier to EOL conversations.
Points de repère du rédacteur
▸ De nombreux aînés fragiles et leurs aidants naturels sont incapables de prendre des décisions éclairées sur les soins de santé, parce qu’ils ne comprennent pas bien leur état de santé actuel. La documentation fait valoir que si les aînés fragiles en savaient plus sur la fragilité et les préjudices des traitements invasifs, ils choisiraient plutôt des soins de confort.
▸ Le dépistage de la fragilité devrait se faire dans tous les milieux de soins, de sorte que les patients et les cliniciens aient d’importants renseignements cliniques au sujet des risques et des bienfaits des options thérapeutiques.
▸ Le dépistage de la fragilité devrait susciter d’importantes conversations à propos des trajectoires du déclin et de la fin de vie (FDV), surtout en soins primaires, où des relations de confiance à long terme se sont souvent établies entre les patients et les cliniciens.
▸ Il faudrait plus de recherche empirique se fondant sur des méthodes exploratoires, comme des enquêtes qualitatives, qui pourraient faire ressortir les facteurs contextuels susceptibles de faire obstacle aux conversations sur la FDV.
Footnotes
↵* Appendix A and Table 1 are available from www.cfp.ca. Go to the full text of the article online and click on the CFPlus tab.
Contributors
Celina Carter conceived of this manuscript, analyzed all data, revised it critically for important intellectual content, gave final approval of the version to be published, and agreed to be accountable for all aspects of the work. Dr Francesco Leanza provided important contextual understanding of primary care and frail older adults in the interpretation of findings, revised the manuscript critically for important intellectual content, gave final approval of the version to be published, and agreed to be accountable for all aspects of the work. Dr Shan Mohammed provided feedback on data analysis, provided important contextual understanding of EOL conversations and frail older adults in the interpretation of findings, revised the manuscript critically for important intellectual content, gave final approval of the version to be published, and agreed to be accountable for all aspects of the work. Dr Ross E.G. Upshur provided feedback on data analysis; provided important contextual understanding of EOL conversations, primary care, and frail older adults in the interpretation of findings; revised the manuscript critically for important intellectual content; gave final approval of the version to be published; and agreed to be accountable for all aspects of the work. Dr Pia Kontos worked closely with the first author to conceive of this manuscript, provided feedback on data analysis, revised the manuscript critically for important intellectual content, gave final approval of the version to be published, and agreed to be accountable for all aspects of the work.
Competing interests
None declared
This article has been peer reviewed.
Cet article a fait l’objet d’une révision par des pairs.
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