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Address correspondence to: Afsan Bhadelia, MS, PhD, Department of Global Health and Population, Harvard T.H. Chan School of Public Health, Boston, MA 02115, USA.
There is growing recognition of the value to patients, families, society, and health systems in providing healthcare, including end-of-life care, that is consistent with both patient preferences and clinical guidelines.
Objectives
Identify the core domains and subdomains that can be used to evaluate the performance of end-of-life care within and across health systems.
Methods
PubMed/MEDLINE (NCBI), PsycINFO (ProQuest), and CINAHL (EBSCO) databases were searched for peer-reviewed journal articles published prior to February 22, 2020. The SPIDER tool was used to determine search terms. A priori criteria were followed with independent review to identify relevant articles.
Results
A total of 309 eligible articles were identified out of 2728 discrete results. The articles represent perspectives from the broader health system (11), patients (70), family and informal caregivers (65), healthcare professionals (43), multiple viewpoints (110), and others (10). The most common condition of focus was cancer (103) and the majority (245) of the studies concentrated on high-income country contexts. The review identified five domains and 11 subdomains focused on structural factors relevant to end-of-life care at the broader health system level, and two domains and 22 subdomains focused on experiential aspects of end-of-life care from the patient and family perspectives. The structural health system domains were: 1) stewardship and governance, 2) resource generation, 3) financing and financial protection, 4) service provision, and 5) access to care. The experiential domains were: 1) quality of care, and 2) quality of communication.
Conclusion
The review affirms the need for a people-centered approach to managing the delicate process and period of accepting and preparing for the end of life. The identified structural and experiential factors pertinent to the “quality of death” will prove invaluable for future efforts aimed to quantify health system performance in the end-of-life period.
End-of-life care is a core component of universal health coverage, and quality end-of-life care is a valued health goal of patients and families. Efforts to improve health system performance must incorporate relevant indicators to track and compare progress across systems and over time.
Introduction
The end-of-life (EoL) period – the timeframe after diagnosis of a life-limiting illness and “preceding an individual's natural death from a process that is unlikely to be arrested by medical care”
Yet, this is only one area of concern of current end of life care. Through appropriate access to quality end-of-life care (EoLC), a recognized component of universal health coverage, many other concerns could largely be eliminated.
People-centered care, a cornerstone of high-quality health systems and of efforts to secure universal health coverage globally, is premised on meeting individual patient needs and those of informal caregivers (referred henceforth as caregivers) across the life course.
World Health Organization (WHO) Organisation for economic Co-operation and development (OECD), The World Bank. Delivering quality health services: A global imperative for universal health coverage.
A “good death,” to the extent that such a concept exists, could be defined as one where efforts are made to achieve what patients and caregivers’ value at EoL. Eliciting these preferences and documenting the core domains associated with a “good death” is thus tantamount to ensuring a high-quality EoL experience.
Prior literature reviews, including systematic reviews and meta-analyses, have examined key components of the “quality of death.”
However, previous reviews have not explicitly focused on comprehensively identifying domains of “quality of death” important to multiple stakeholders such as caregivers, community members, healthcare providers, and the broader health system. Further, there has been a lack of attention given to issues that are important across stakeholders and which are critical to improving health system performance on EoLC. That is the focus of this review. The review is guided by the three most cited dimensions of health system performance – accessibility, affordability, and quality.
The focus of the review is to identify factors that can be influenced by the health system to improve the “quality of death.” Thus, our review was limited to those databases and articles where such information is most likely to be published. This contrasts with the larger societal perspective which would require a broader interdisciplinary query from fields such as sociology, anthropology, and others and that could include a much broader set of domains.
This review serves as the first step toward producing the Quality of Death and Dying Index 2021, a composite metric to assess health system performance on EoLC across countries, and in informing development of relevant indicators. Future studies can similarly identify relevant indicators within and across these domains and weigh their importance to patients and caregivers overall and for specific subpopulations of interest (e.g., women, minoritized communities) to comprehensively evaluate EoL health system performance from a person-centered perspective. The findings of this review are equally relevant during public health emergencies, as is currently occurring with the COVID-19 pandemic, when access to and quality of EoLC can quickly diminish in the absence of explicit prioritization by health systems.
A scoping review was conducted to systematically map and synthesize knowledge within the exploratory area of “quality of death” and to identify core concepts, evidence types, and related gaps within this area using a health systems lens.
As compared to systematic and integrative reviews, the purpose of this review was not to examine experimental studies to evaluate their effectiveness nor to develop a theory or hypotheses based on review of experimental and nonexperimental studies,
but to provide a narrative synthesis of core issues within the broader scope of EoLC.
Prior to conducting this review PROSPERO and the Cochrane Library of Systematic Reviews were searched, and an informal PubMed search was performed to ensure that this scoping review did not duplicate prior efforts. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) was referenced in the protocol (WebAppendix 1, pg. 2–9) to ensure that the suggested reporting items were included with the corresponding checklist (WebAppendix 2, pg. 10–12).
The SPIDER tool, used in reviews of qualitative and mixed methods research studies as a framework to organize and conduct concept mapping of the review question,
was applied to identify relevant search terms (WebAppendix 1, pg. 3–5). The SPIDER tool was selected for its greater specificity than the alternate PICO tool, developed for quantitative reviews.
Peer-reviewed articles indexed in three databases – PubMed/MEDLINE (NCBI), PsycINFO (ProQuest) and CINAHL (EBSCO) – were searched as these serve as repositories of a wide range of literature covering biomedical and life sciences, behavioral science and mental health, as well as related content from the nursing and allied health professions. The review did not have any restrictions on date, geography, or age group but was limited to peer-reviewed journal articles available in full text and published in English. The search was implemented on February 22, 2020.
Results were screened based on a priori eligibility criteria (WebAppendix 1, pg. 6–7) on the types of studies, participants, outcomes, and publications to be included. Only nonexperimental studies explicitly focused on the EoL period, regardless of reference to palliative care, were included. The review focused on extracting information from any study that aimed to define and/or measure the construct of “quality of death” and/or to document information on concepts relevant to “quality of death.” This included studies that conducted one or more of the following – 1) systems level analyses of core aspects of EoLC and/or 2) examination of patient, caregiver, and/or community member experiences, preferences, views, attitudes, and perceptions of healthcare services at the EoL. Studies, including systematic reviews and meta-analyses, eligible for inclusion were those that provided qualitative and/or quantitative information through primary or secondary data on relevant EoLC domains. Both primary and secondary sources were included to ensure capture of the range – breadth and depth – of evidence and to address any inadvertent gaps in the search. Outcome measures were those in the broad health system performance domains of access, affordability, and the various dimensions of quality.
World Health Organization (WHO) Organisation for economic Co-operation and development (OECD), The World Bank. Delivering quality health services: A global imperative for universal health coverage.
(A. B. and L. E. O.) evaluated the titles and abstracts following the eligibility criteria. A third reviewer (J. L. C.) reconciled differences in selection. Two independent reviewers (J. L. C. and L. E. O.) reviewed the full text articles, and a third reviewer (A. B.) conducted a verification review of all full text articles, identified inconsistencies and reconciled differences between the two independent reviewers.
Data Management and Charting
All articles derived from the previously described search were downloaded and managed in Endnote X9, including for purposes of independent and blinded review. Article duplicates were removed. A standardized data charting form documented the following: 1) contextual and methodological study characteristics including focus country/countries, objectives, data type (e.g., primary, secondary), data collection method (qualitative, quantitative or mixed), perspective (e.g., patient caregiver, provider, general public), sample size, condition(s) of focus (if any), population group (e.g., adult, children), study setting (e.g., hospital, nursing home, community-based care, homecare), instruments or metrics used or developed, specifying if validated or not, and study limitations; and 2) identified domains and subdomains and rationale on relevance to the construct of “quality of death.” Narrative analysis was conducted to identify structural and thematic patterns following an iterative process of constant comparison of charted information from selected articles, periodic discussion, and updates to charting. This was done to ensure that domains and subdomains, particularly their detailed explanations, emerged from the literature and represented thematic saturation. Moreover, the health systems functions framework
World Health Organization (WHO) Organisation for economic Co-operation and development (OECD), The World Bank. Delivering quality health services: A global imperative for universal health coverage.
were referenced. While these did not determine domains, they served as a reference point on thematic patterns once data charting and synthesis of findings was completed.
Managing Risk of Bias
The potential for bias is recognized given the multitude of interpretations of the construct of “quality of death.” The possibility of subjective interpretation and bias in the study was limited by independent and dual review with reconciliation through a third independent reviewer of all search results, full-text review, and data charting. Grey literature was not included and could result in bias. However, key concepts from this broad literature are likely to also appear in the published works.
Results
Overview of Search Results
The search yielded 2728 discrete articles from PubMed/MEDLINE, PsycINFO, and CINHL (PRISMA flowchart; Fig. 1). Based on duplicate removal, and abstract, title and full-text review, 309 articles were selected for inclusion. Full text of one article could not be retrieved to assess for inclusion.
Fig. 1PRISM flow diagram of scoping review results.
Study characteristics of the 309 articles in the review are presented in Table 1. Majority of the studies (n=257) used primary data pertinent to at least one relevant EoLC domain followed by 50 reviews or meta-analyses. The primary perspectives ranged from patients (n=70), caregivers (n=65), health care providers (HCPs) (n=43), broader health system (n=11), multiple (n=110), and other (n=10). “Other” studies, captured the general public's perspective on what they believe is important for better “quality of death” from a health systems lens. These classifications denote the primary lens of the article, however, many studies that focus on the patient, caregiver, or provider perspectives also offer information on the broader health system or community perspectives. The largest proportion of studies examined multiple perspectives, including from the health system and community level. Notably, a third (n=104) of the studies focused on cancer and only 14 focused on specific subpopulations of interest (e.g., women, minoritized communities, indigenous populations, or lesbian, gay, bisexual, and transgender individuals). The majority (n=245) provided data from only high-income countries (HICs), while 38 articles included low- and middle-income country (LMIC) data. The number of relevant articles has steadily increased since 2007, with the most relevant articles being published in 2018 and 2019, the last full year covered by the review.
Table 1Number of Articles Included in the Review by Study Characteristic
Domains and Subdomains of Identified in Included Studies
The scoping review identified seven domains and 33 subdomains (Table 2, further details in WebAppendix 3, pg. 13–24). These identify relevant parameters of a “good death” and can be used to guide EoLC reform (Panel 1). The seven identified domains, reported in turn, relate to the system structure to provide EoLC (five domains) – stewardship and governance, resource generation, financing and financial protection, service provision, and access to care – and patient and caregiver experiences of EoLC (two domains) – quality of care and quality of communication. The systemic and experiential domains are expected to impact realization of a “quality of death” alongside effecting clinical and population health outcomes related to health at the EoL (Fig. 2). Panels present in-depth analysis of cross cutting issues that intersect multiple domains. WebAppendix 3 and 4 list the full list of references for each domain and subdomain (pg. 13–24) and the entire review bibliography (pg. 25–41).
Panel 1: : Defining and preparing for a “good death”. What constitutes a “good death” is an ongoing debate, and presumably, the characterization of it is of curiosity and concern to all humans given death's universality. While the notion of a “good death” is personal and contextually driven, there are common features that have been cited in studies conducted around the world. These cut across the experiential domains of quality of care and quality of communication, and corresponding subdomains. General definitions of a “good death” and preparing for it can, to the extent possible, inform the design and reform of EoLC to deliver on the “quality of death.” Studies report a “good death” to be a peaceful and dignified death,
A “good death” is reported to be one with readiness for death, presence (e.g., family and loved ones at bedside) and sense of community, time to say goodbye, having had clear information on treatment options presented at the EoL, in one's sleep and quietly, without pain and suffering, anxiety or depression, devoid of an overwhelming or drawn out process and with preferred death rituals performed.
Further, not being a burden to family, maintaining autonomy, having positive final days, shielding others from grief, and being able to make care decisions through to the final days before death were stable preferences of most patients at EoL.
Cultural and religious beliefs and values, and their impact on preferences for end-of-life care among four ethnic groups of community-dwelling older persons.
Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.
EoL preparedness, requires acceptance of death as an impending reality. Hence, EoL preparedness corresponds to tasks, processes, and actions necessary to reach closure and the acceptance of loss as inevitable.
Related preferences differ due to various factors – clinical (e.g., cognitive and functional status), personal (e.g., awareness of prognosis), social/cultural (e.g., perceived burden on others), emotional (e.g., existential anguish), spiritual (e.g., support from faith community), and financial (e.g., costs of care, financial security).
Patients and families prefer to know what to expect in terms of the physical condition as death nears to prepare for it and identify a proxy for decision-making.
For caregivers, EoL preparation also involves having time to process information emotionally (affective preparedness), to finish important tasks (behavioral preparedness)
Further, both patients and caregivers rank patient's desire not to be a burden to their family, and to have family presence at time of death and in general to be important for death preparation.
EoL preparedness also pertains to autonomy and empowerment. For patients, it is being able to set and achieve goals, being able to have a choice and to make decisions for oneself.
For caregivers, it includes being able to practice patient advocacy and for parents of pediatrics patients, have “competencies for dealing with the child” to provide normality and security for them.
EoL preparedness preferences on place of care and preferred place of death incorporate setting-related wishes of each patient whether descriptive (e.g., “one's favorite place”
Preferred place of death for children and young people with life-limiting and life-threatening conditions: a systematic review of the literature and recommendations for future inquiry and policy.
patient living conditions and arrangements, social support level, level of burden imposed on caregivers, meeting of specific personal needs, and familiarity of location.
There is variability across each factor influencing preferences. Further, it is important to acknowledge that preferences can and do vary over the course of EoLC.
Domain 1 – stewardship and governance – was defined as the coordinating and management of functions that are precursors to improving EoLC within the health system.
Findings were subdivided into three subdomains. Subdomain 1, priority-setting and strategic planning of EoLC system, highlights the importance of EoLC prioritization, including policymaking, resource allocation, and coordination, particularly on structural and institutional aspects.
Social and health system complexities impacting on decision-making for utilization of oncology and palliative care in an African context: a qualitative study.
Multivariate analysis of countries' government and health-care system influences on opioid availability for cancer pain relief and palliative care: more than a function of human development.
Subdomain 2, laws, regulations, and standards, focuses on the regulatory framework, including laws, regulations, and rules establishing standards of EoLC around quality, safety, and efficacy.
Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.
Dying in the hospital setting: a meta-synthesis identifying the elements of end-of-life care that patients and their families describe as being important.
Implementing evidence-based palliative care programs and policy for cancer patients: epidemiologic and policy implications of the. 2016 American Society of Clinical Oncology clinical practice guideline update.
Subdomain 3, public awareness and death education, focuses on barriers that may limit the health system's capacity to deliver EoLC, including leading up to and at death (for patient and caregivers), and beyond death (for caregivers).
Public discourse and community engagement on the value of death, for example, can promote open dialogue, break down stereotypes, and thus improve the EoL experience for patients.
Death education can inform the citizenry on ways to meet personal preferences at EoL while understanding that diverse values on dying and death exist within any society.
The importance of good death components among cancer patients, the general population, oncologists, and oncology nurses in Japan: patients prefer "fighting against cancer".
Health systems have a role to play in advancing public awareness and education on EoLC through, for example, dissemination of appropriate resources and information.
Domain 2: Resource Generation
Domain 2 – resource generation – pertains to human, physical, and knowledge inputs necessary to effectively realize health system goals, including EoL goals.
Findings were summarized into five subdomains. Subdomain 1, training of competent and multidisciplinary care teams, identified the need for all cadres of health workers to obtain standardized palliative care (PC) and EoLC-specific competency-based
3) effectively and openly communicate sensitive, accurate, and culturally appropriate information (e.g., on bad news, truth disclosure) in a timely manner,
Understanding the provision of palliative care in the context of primary health care: qualitative research findings from a pilot study in a community setting in Chile.
Barriers to palliative care in people with chronic obstructive pulmonary disease in home care: a qualitative study of the perspective of professional caregivers.
Subdomain 2, HCP staffing, benefits, compensation, and access to essential resources, encapsulates broader human resource concerns. These include, not only issues related to compensation, but educational and practical tools to enhance sensitivity of HCPs to vulnerability of family caregivers during the EoL period and to bolster the health workforce in delivering EoLC.
Subdomain 3, HCP-centered support, captures the challenges HCPs face in providing care for terminal patients and caregivers, often without adequate training.
End-of-life care is more than wound care": health-care providers' perceptions of psychological and interpersonal needs of patients with terminal cancer.
End-of-life care is more than wound care": health-care providers' perceptions of psychological and interpersonal needs of patients with terminal cancer.
Relevant resources and adequate time to address the impact of death on HCPs at personal and professional levels, including on their HrQoL, were reported as being overlooked.
Barriers to palliative care in people with chronic obstructive pulmonary disease in home care: a qualitative study of the perspective of professional caregivers.
Subdomain 4, environment, pertains to the EoLC built environment. This includes factors related to physical environment (e.g., infrastructure related both in terms of equipment and to create a private, personalized, and comfortable space such as a single room with a window and less visible technology),
Qualitative analysis of palliative care for pediatric patients with cancer at Bugando Medical Center: an evaluation of barriers to providing end-of-life care in a resource-limited setting.
Environmental design for end-of-life care: an integrative review on improving the quality of life and managing symptoms for patients in institutional settings.
Dying in the hospital setting: a meta-synthesis identifying the elements of end-of-life care that patients and their families describe as being important.
and social environment (e.g., environmental facilitation of social interactions that allow closeness to others such as with regular caregiver visits, stimulating activities that are “positive distractions,” and activities of daily living including the practice of spirituality).
Environmental design for end-of-life care: an integrative review on improving the quality of life and managing symptoms for patients in institutional settings.
Patients' perceptions of palliative care quality in hospice inpatient care, hospice day care, palliative units in nursing homes, and home care: a cross-sectional study.
This includes the presence of a robust information system to monitor and evaluate quantifiable aims of EoLC system functioning and systematic research to improve EoL delivery.
Domain 3 – financing and financial protection – was defined as the need for measures to manage healthcare costs and avert catastrophic health expenditure linked with impoverishment.
Findings were sorted into two subdomains. Subdomain 1, financial distress and fragility, encapsulates the direct and indirect costs of EoLC and the ability to pay for it.
Social and health system complexities impacting on decision-making for utilization of oncology and palliative care in an African context: a qualitative study.
They patiently heard what we had to say... this felt different to me': the palliative care needs and care experiences of advanced cancer patients and their families in Bangladesh.
Qualitative analysis of palliative care for pediatric patients with cancer at Bugando Medical Center: an evaluation of barriers to providing end-of-life care in a resource-limited setting.
Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia:evidence to guide the development of a palliative care service.
Indirect costs include transportation costs, income loss due to caregiving responsibilities, costs for funeral and burial services, and other legal and financial preparation costs.
Qualitative analysis of palliative care for pediatric patients with cancer at Bugando Medical Center: an evaluation of barriers to providing end-of-life care in a resource-limited setting.
They patiently heard what we had to say... this felt different to me': the palliative care needs and care experiences of advanced cancer patients and their families in Bangladesh.
Impact of high self-perceived burden to others with preferences for end-of-life care and its determinants for terminally ill cancer patients: a prospective cohort study.
Subdomain 2, EoLC financing and affordability of care, encompasses putting the financial mechanisms (e.g., health insurance for agreed provisions by the health system), particularly public financing of EoLC, in place to ensure that the financial ability to pay is not a barrier to EoLC.
Social and health system complexities impacting on decision-making for utilization of oncology and palliative care in an African context: a qualitative study.
Qualitative analysis of palliative care for pediatric patients with cancer at Bugando Medical Center: an evaluation of barriers to providing end-of-life care in a resource-limited setting.
was noted. Financial assistance through cost-effective and targeted schemes can reduce the financial burden and distress on patients and families due to direct and indirect costs.
The incompatibility of healthcare services and end-of-life needs in advanced liver disease: a qualitative interview study of patients and bereaved carers.
Findings were grouped into four subdomains. Subdomain 1, availability of facility-based, home-based and community-based EoLC, encompasses the availability of safe EoLC services and medicines across geographic locations (facility, home, community) and levels of care (primary, secondary, tertiary) with related linkages.
Understanding the provision of palliative care in the context of primary health care: qualitative research findings from a pilot study in a community setting in Chile.
Medication management for community palliative care patients and the role of a specialist palliative care pharmacist: a qualitative exploration of consumer and health care professional perspectives.
Dying at home of cancer: whose needs are being met? The experience of family carers and healthcare professionals (a multiperspective qualitative study).
The complex relationship between household income of family caregivers, access to palliative care services and place of death: a national household population survey.
Understanding death and dying in select first nations communities in northern Manitoba: issues of culture and remote service delivery in palliative care.
Subdomain 2, administration of symptom management, is the enabling of providers and facilities to administer symptom control to alleviate physical, psychological, social, and spiritual suffering, and provide comfort care following appropriate guidelines and protocols.
Dying in the hospital setting: a meta-synthesis identifying the elements of end-of-life care that patients and their families describe as being important.
Subdomain 3, care integration, is coordinated care through intersectoral cooperation between facilities and levels of care (especially primary and secondary), particularly through a functioning referral system, and interpersonal collaboration between HCPs.
Implementing evidence-based palliative care programs and policy for cancer patients: epidemiologic and policy implications of the. 2016 American Society of Clinical Oncology clinical practice guideline update.
It doesn't do the care for you': a qualitative study of health care professionals' perceptions of the benefits and harms of integrated care pathways for end of life care.
multidisciplinary approach to service provision to respond to multidimensional needs with informed care, information exchange between HCPs on diagnosis, treatment and prognosis,
Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia:evidence to guide the development of a palliative care service.
The incompatibility of healthcare services and end-of-life needs in advanced liver disease: a qualitative interview study of patients and bereaved carers.
Subdomain 4, responsiveness, focuses on the organization and delivery of care to offer timely, active, attentive, secure, and technically and culturally competent care that is patient-centered, and generates confidence in the health system.
discussion and understanding of patient and family experience and needs, as well as respecting and honoring of patient's and family's values, goals, preferences (e.g., use/avoidance of artificial prolongation of life) and decisions for medical and other care.
Understanding the relationship transitions and associated end of life clinical needs of young adults with life-limiting illnesses: a triangulated longitudinal qualitative study.
Dying in the hospital setting: a meta-synthesis identifying the elements of end-of-life care that patients and their families describe as being important.
Death is difficult in any language’: a qualitative study of palliative care professionals’ experiences when providing end-of-life care to patients from culturally and linguistically diverse backgrounds.
Domain 5 – access to care – captures experiential aspects of access, such as to address the core dimensions of serious health suffering – physical, psychological, social, and spiritual – and to address structural components of access.
Findings were categorized into eight subdomains. Subdomain 1, access to medicines, specifically captures opioid consumption at the country level to alleviate the burden of serious health-related suffering and secure a reliable and timely supply of Palliat Meds, such as morphine, at the patient level.
Multivariate analysis of countries' government and health-care system influences on opioid availability for cancer pain relief and palliative care: more than a function of human development.
Qualitative analysis of palliative care for pediatric patients with cancer at Bugando Medical Center: an evaluation of barriers to providing end-of-life care in a resource-limited setting.
Dying in the hospital setting: a meta-synthesis identifying the elements of end-of-life care that patients and their families describe as being important.
The incompatibility of healthcare services and end-of-life needs in advanced liver disease: a qualitative interview study of patients and bereaved carers.
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