What are the priorities for developing culturally appropriate palliative and end‐of‐life care for older people? The views of healthcare staff working in New Zealand

This paper explores the views of healthcare staff regarding the provision of culturally appropriate palliative care for Māori, Pacific Island and Chinese elders living in Auckland, New Zealand. The ageing population is culturally and ethnically diverse and, along with other developed countries experiencing high levels of migration, the challenge is balancing the rise in numbers of older people from different ethnic and cultural groups with end‐of‐life care, which reflects personal values and beliefs. Two joint interviews and ten focus groups were conducted with eighty staff across a range of primary, secondary and speciality care settings in 2010. The findings demonstrated that participants viewed the involvement of family as fundamental to the provision of palliative care for Māori, Pacific Island and Chinese elders. For Māori and Pacific Islanders, healthcare staff indicated the importance of enabling family members to provide ‘hands‐on’ care. The role of family in decision‐making was fundamental to the delivery of and satisfaction with care for older Chinese family members. Care staff highlighted the need to be cognisant of individual preferences both within and across cultures as a fundamental aspect of palliative care provision. The role of family in ‘hands‐on’ palliative care and decision‐making requires care staff to relinquish their role as ‘expert provider’. Counter to the prioritisation of autonomy in Western health‐care, collective decision‐making was favoured by Chinese elders. Providing families with the requisite knowledge and skills to give care to older family members was important. Whilst assumptions are sometimes made about preferences for end‐of‐life care based on cultural values alone, these data suggest that care preferences need to be ascertained by working with family members on an individual basis and in a manner that respects their involvement in palliative care provision.     

Facilitating advance care planning with ethnically diverse groups of frail,low‐income elders in the USA: perspectives of care managers on challenges and recommendations

This study examined care managers' perspectives on facilitating advance care planning (ACP) with ethnically diverse elders enrolled in a managed long‐term care programme that coordinates medical and long‐term care for frail, poor elders in the USA. Seven in‐depth interviews and two focus groups were conducted with 24 lead supervisors and care managers of care management teams between July and August 2008; data were analysed with qualitative thematic analysis method. Participants identified four main sources of challenges: death and dying are taboo discussion topics; the dying process is beyond human control; family and others hold decision‐making responsibility; and planning for death and dying is a foreign concept. Participants' recommendations to address these challenges were to develop trust with elders over time; cultivate cultural knowledge and sensitivity to respect value orientations; promote designating a healthcare proxy; recognise and educate families and community leaders as critical partners in ACP and provide practical support as needed throughout the illness experience. These findings suggest important practice implications for care managers working with increasingly diverse cultural groups of elders at the end of life.     

Chinese seniors' perspectives on end-of-life decisions.

Making end-of-life decisions is a painful and difficult process; one that can be intensified by cultural differences between physicians and their patients. The objective of this study was to examine attitudes of Chinese seniors towards end-of-life decisions. We conducted a qualitative survey in a Chinese community centre in Toronto, Canada. Face-to-face interviews, in Cantonese, were conducted with 40 Chinese seniors 65 years of age or older. Respondents based their end-of-life decision making on the following factors: hope, suffering and burden, the future, emotional harmony, the life cycle, respect for doctors, and the family. Respondents rejected advance directives. Respondents' attitudes toward end-of-life decision making can be understood through the lens of values from Confucianist, Buddhist and Taoist traditions. Health care workers can best achieve quality end-of-life care--and address the cultural differences that may arise--by focusing primarily on understanding the perspectives of patients and their families, and by continually striving for balanced and open communication at all stages of the caregiving process.     

Use of advance directives for nursing home residents in the emergency department

Documented requests can ensure that patients' end-of-life care preferences are implemented, particularly in emergent circumstances. This study a) compared information on advance directives found in different sources of documentation in the hospital record of nursing home patients admitted through the emergency department and b) assessed emergency department clinicians' perceptions of how end-of-life care requests are communicated to them. Seven potential sources of documentation were reviewed in the medical records of 40 patients, and semistructured interviews were conducted with 10 emergency department clinicians. We found little concordance among sources of advance directive documentation. Our results suggest variability in documentation for nursing home patients on transfer to the emergency department, and that emergency department clinicians experience substantial difficulty in reliably obtaining information about advance directives. As treatment may vary based solely on available documentation, such information gaps may decrease the likelihood of adherence in the emergency department to patients' previously expressed care preferences.     

Preferences in end-of-life care of older persons: after-death interviews with proxy respondents

This population-based study employing after-death interviews with proxies describes older persons' preferences regarding medical care at the end of life. Interviews were held with 270 proxy respondents of 342 deceased persons (age range 59-91) in the Netherlands, The deceased were respondents to the Longitudinal Aging Study Amsterdam. The prevalence of advance directives (ADs), preferences for medical decisions at the end of life (i.e. withholding treatment, physician-assisted suicide euthanasia) and preferences about the focus of treatment in the last week of life (i.e. comfort care versus extending life) were examined. Written ADs were present in 14% of the sample. A quarter had designated a surrogate decision-maker. Co-morbidity and perceived self-efficacy (PSE) were positively associated with ADs. About half the sample had expressed a preference in favour or against one or more medical decisions at the end of life. Predictors positively associated with expressing a preference were co-morbidity, dying from cancer, and PSE. Being religious was negatively associated with expressing a preference. The knowledge of the proxy regarding the older person's preference for the focus of treatment was dependent on the patient's symptom burden as perceived by the proxy. The majority of older persons had died without either an AD, or having expressed preferences for end-of-life care. Stimulating the formulation of ADs may help professionals who work with older people to understand these preferences better, especially in the case of non-cancer patients and those with low PSE.     

Hospice or home? Expectations of end‐of‐life care among white and Chinese older people in the UK

This paper presents findings from two linked studies of white (n = 77) and Chinese (n = 92) older adults living in the UK, which sought their views about end-of-life care. We focus particularly on experiences and expectations in relation to the provision of end-of-life care at home and in hospices. White elders perceived hospices in idealised terms which resonate with a 'revivalist' discourse of the 'good death'. In marked comparison, for those Chinese elders who had heard of them, hospices were regarded as repositories of 'inauspicious' care in which opportunities for achieving an appropriate or good death were limited. They instead expressed preference for the medicalised environment of the hospital. Among both groups these different preferences for instututional death seemed to be related to shared concerns about the demands on the family that may flow from having to manage pain, suffering and the dying body within the domestic space. These concerns, which appeared to be based on largely practical considerations among the white elders, were expressed by Chinese elders as beliefs about 'contamination' of the domestic home (and, by implication, of the family) by the dying and dead body.     

Peer Reviewed: Discussions by Elders and Adult Children About End-of-Life Preparation and Preferences

Introduction

In the United States, 73% of deaths occur among people aged 65 years or older. Although most would prefer to die at home after a short illness, most actually die in institutions after prolonged declines. Despite this discrepancy, elders and their adult children often do not discuss end-of-life preferences. Use of advance directives has not been widespread, and people often avoid the subject until a crisis. This project focused on informal family communication about end-of-life preparation and preferences, about which little is known.

Methods

In May 2006, we conducted in-depth exploratory interviews with 15 older adults about their end-of-life preparation and preferences and with 15 younger adults about their parents'' end-of-life preparation and preferences. The interview included an item rating the depth of discussion.

Results

Participants in both groups were primarily female and white. Mean age of older adults was 78.6 years (range, 70–88 years). Mean age of younger adults was 53.1 years (range, 42–63 years); mean age of their parents was 82.6 years (range, 68–99 years). Nine older adults reported discussing end-of-life preparation and preferences with their adult children; six had barely discussed the topic at all. Ten younger adults reported having talked with their parents about end-of-life preparation and preferences; five had not discussed it. Barriers to discussions about end-of-life preparation and preferences were fear of death, trust in others to make decisions, family dynamics, and uncertainty about preferences. Facilitators for discussion were acceptance of the reality of death, prior experience with death, religion or spirituality, and a desire to help the family. Successful strategies included casually approaching the topic and writing down end-of-life preparation and preferences.

Conclusion

Knowing the obstacles to and facilitators for discussion can help health care and public health professionals target approaches to encouraging elders and their families to discuss end-of-life preparation and preferences before a crisis.     

The state of advance care planning: one decade after SUPPORT

The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) was a landmark study regarding end-of-life decision making and advance care planning. Phase I of the study looked at the state of end of life in various hospitals, and phase II implemented a nurse-facilitated intervention designed to improve advance care planning, patient-physician communication, and the dying process. The observational phase found poor quality of care at the end of life and the intervention failed to improve the targeted outcomes. The negative findings brought public attention to the need to improve care for the dying and spawned a wealth of additional research on decision-making at the end of life. In the decade since SUPPORT, researchers have defined the attributes of a "good death," addressed the role of advance directives in advance care planning, and studied the use of surrogate decision-making at the end of life. This rekindled the discussion on advance care planning and challenged health care providers to design more flexible approaches to end of life care.     

Efficacy of Advance Care Planning: A Systematic Review and Meta-Analysis

ObjectiveTo systematically review the efficacy of advance care planning (ACP) interventions in different adult patient populations.DesignSystematic review and meta-analyses.Data SourcesMedline/PubMed, Cochrane Central Register of Controlled Trials (1966 to September 2013), and reference lists.Study SelectionRandomized controlled trials that describe original data on the efficacy of ACP interventions in adult populations and were written in English.Data Extraction and SynthesisFifty-five studies were identified. Study details were recorded using a predefined data abstraction form. Methodological quality was assessed using the PEDro scale by 2 independent reviewers. Meta-analytic techniques were conducted using a random effects model. Analyses were stratified for type of intervention: ‘advance directives’ and ‘communication.’Main Outcomes and MeasuresPrimary outcome measures were completion of advance directives and occurrence of end-of-life discussions. Secondary outcomes were concordance between preferences for care and delivered care, knowledge of ACP, end-of-life care preferences, quality of communication, satisfaction with healthcare, decisional conflict, use of healthcare services, and symptoms.ResultsInterventions focusing on advance directives as well as interventions that also included communication about end-of-life care increased the completion of advance directives and the occurrence of end-of-life care discussions between patients and healthcare professionals. In addition, interventions that also included communication about ACP, improved concordance between preferences for care and delivered care and may improve other outcomes, such as quality of communication.ConclusionsACP interventions increase the completion of advance directives, occurrence of discussions about ACP, concordance between preferences for care and delivered care, and are likely to improve other outcomes for patients and their loved ones in different adult populations. Future studies are necessary to reveal the effective elements of ACP and should focus on the best way to implement structured ACP in standard care.     

Advance directives: from the perspective of the patient and the physician.

American physicians and patients share some common ground in their perspectives on advance directives. The majority in both groups strongly endorse the use of these documents. Both groups believe it is the physician's responsibility to initiate the discussion about advance directives. However, a gap between the two perspectives can be defined. In end-of-life decision making, physicians balance the ethical principle of patient autonomy with other principles such as appropriate withholding of care in the setting of futility. Patients' preferences for end-of-life care are most influenced by expected outcomes. Physicians tend to be selective in their indications for initiating a discussion about advance directives, according to clinical factors. In contrast, most patients want to discuss advance directives with their physician under all circumstances.     

No Time to Waste: An Appraisal of Value at the End of Life

ObjectivesThe use of economic evaluations of end-of-life interventions may be limited by an incomplete appreciation of how patients and society perceive value at end of life. The objective of this study was to evaluate how patients, caregivers, and society value gains in quantity of life and quality of life (QOL) at the end of life. The validity of the assumptions underlying the use of the quality-adjusted life-years (QALY) as a measure of preferences at end of life was also examined.MethodsMEDLINE, Embase, CINAHL, PsycINFO, and PubMed were searched from inception to February 22, 2021. Original research studies reporting empirical data on healthcare priority setting at end of life were included. There was no restriction on the use of either quantitative or qualitative methods. Two reviewers independently screened, selected, and extracted data from studies. Narrative synthesis was conducted for all included studies. The primary outcomes were the value of gains in quantity of life and the value of gains in QOL at end of life.ResultsA total of 51 studies involving 53 981 participants reported that gains in QOL were generally preferred over quantity of life at the end of life across stakeholder groups. Several violations of the underlying assumptions of the QALY to measure preferences at the end of life were observed.ConclusionsMost patients, caregivers, and members of the general public prioritize gains in QOL over marginal gains in life prolongation at the end of life. These findings suggest that policy evaluations of end-of-life interventions should favor those that improve QOL. QALYs may be an inadequate measure of preferences for end-of-life care thereby limiting their use in formal economic evaluations of end-of-life interventions.     

Beyond Good Intentions and Patient Perceptions: Competing Definitions of Effective Communication in Head and Neck Cancer Care at the End of Life

Effective communication between dying cancer patients and their health care providers about prognosis and treatment options ensures informed decision making at the end of life. This study analyzed data from interviews with end-stage head and neck cancer patients and their health care providers about communication competence and approaches to communicating about end-of-life issues. Patients rated their oncologists as competent and comfortable discussing end-of-life issues, although few reported discussing specific aspects of end-of-life care. Oncologists viewed giving prognostic information as a process rather than a singular event, and preferred answering patients’ questions as opposed to guiding the discussion. These data reveal subtle disconnects in communication suggesting that patients’ and health care providers’ information needs are not being met.     

End-of-life care for gay,lesbian, bisexual and transgender people

There is little understanding in Australia of the special issues faced by gay, lesbian, bisexual and transgender people in end-of-life care and advance care planning. This exploratory study aimed to achieve an initial understanding of these issues to inform the development of a larger study involving gay, lesbian, bisexual and transgender service users. Consultations were carried out with 19 service providers and 6 gay, lesbian, bisexual and transgender community members in the Northern Rivers and metropolitan Sydney areas of New South Wales, Australia. Participants reported barriers to health care service access due to discrimination, inappropriate care and lack of knowledge among both consumers and health care workers of legal rights at the end of life. While advance care planning can assist with improving end-of-life care, respondents reported a number of obstacles. These included a lack of knowledge and absence of perceived need and the additional obstacle of social isolation, leading to difficulties identifying alternative decision-makers. The study highlighted the need for education for gay, lesbian, bisexual and transgender people and health and aged care providers on existing legal provisions to prevent discrimination in end-of-life care.     

The Compliance of End-of-Life Care Preferences Among Older Adults and Its Facilitators and Barriers: A Scoping Review

ObjectivesTo explore the compliance of end-of-life (EOL) care preferences, and the facilitators and barriers of promoting quality of EOL care among older adults.DesignA scoping review was used to identify key themes in the compliance of EOL care preferences among older adults.Setting and participantsStudies published between 2009 and 2020 were identified from the Medline and Cochrane libraries. Eligible articles containing components related to the compliance of EOL care preferences among older adults were selected.MeasuresThe eligible articles were thematically synthesized. Factors that affected the compliance of EOL care preferences among older adults were identified from the key components.ResultsIn total, 35 articles were included to identify the key components in the compliance of EOL care preferences: (1) supportive policy, (2) supportive environment, (3) cultural characteristics, (4) advance care planning (ACP), (5) the concordance of EOL care preferences between patients and surrogate decision makers, (6) prognosis awareness, and (7) patient's health status and the type of disease. Facilitators for the compliance of EOL care preferences included enactment of relevant policy, sufficient care institutions, the utilization of ACP, and poor health status. Barriers included lack of supportive policy, different culture, and low utilization of ACP.Conclusions/ImplicationsThe compliance of EOL care preferences was low among older adults. The compliance of EOL care preferences can be improved through relevant policy development and the utilization of ACP.     

Elders' decision making regarding the use of long-term care services: a precarious balance

The purpose of this qualitative study was to explore factors that influenced decision making regarding the use and nonuse of long-term care services, with a particular focus on elders' attitudes, values, and beliefs. The sample (N = 27) consisted of high-functional elders recently admitted to nursing homes and community-dwelling, high-risk elders recently diverted from nursing homes following a prescreening program. Data were collected through indepth, face-to-face, semistructured interviews and analyzed using qualitative content analysis. Independence and sense of self were the strongest values to emerge. The attitude of acceptance, both passive and active, helped elders cope with increasing levels of dependency and lifestyle changes. The desire to be part of decisions, both major life planning and day-to-day choices such as meal planning, was pervasive. Decision making was individualistic and complex. Loss of control was threatening to the sense of self, leaving some elders feeling shortchanged.     

Age-based disparities in end-of-life decisions in Belgium: a population-based death certificate survey

ABSTRACT: BACKGROUND: A growing body of scientific research is suggesting that end-of-life care and decision making may differ between age groups and that elderly patients may be the most vulnerable to exclusion of due care at the end of life. This study investigates age-related disparities in the rate of end-of-life decisions with a possible or certain life shortening effect (ELDs) and in the preceding decision making process in Flanders, Belgium in 2007, where euthanasia was legalised in 2002. Comparing with data from an identical survey in 1998 we also study the plausibility of the 'slippery slope' hypothesis which predicts a rise in the rate of administration of life ending drugs without patient request, especially among elderly patients, in countries where euthanasia is legal. METHOD: We performed a post-mortem survey among physicians certifying a large representative sample (n=6927) of death certificates in 2007, identical to a 1998 survey. Response rate was 58.4%. RESULTS: While the rates of non-treatment decisions (NTD) and administration of life ending drugs without explicit request (LAWER) did not differ between age groups, the use of intensified alleviation of pain and symptoms (APS) and euthanasia/assisted suicide (EAS), as well as the proportion of euthanasia requests granted, was bivariately and negatively associated with patient age. Multivariate analysis showed no significant effects of age on ELD rates. Older patients were less often included in decision making for APS and more often deemed lacking in capacity than were younger patients. Comparison with 1998 showed a decrease in the rate of LAWER in all age groups except in the 80+ age group where the rate was stagnant. CONCLUSION: Age is not a determining factor in the rate of end-of-life decisions, but is in decision making as patient inclusion rates decrease with old age. Our results suggest there is a need to focus advance care planning initiatives on elderly patients. The slippery slope hypothesis cannot be confirmed either in general or among older people, as since the euthanasia law fewer LAWER cases were found.     

Patients' and healthcare providers' understandings of life-sustaining treatment: are perceptions of goals shared or divergent?

In this cross-sectional qualitative study, researchers performed in-depth, semistructured interviews with 30 pairs of patients and their primary care providers in an outpatient clinic of a large, urban Veterans Affairs (VA) medical center in the United States. During audiotaped interviews to assess their understanding of advance directive concepts, participants were asked what "life-sustaining treatment" means to them and why they think of it in the way they do. The findings indicate that patients and providers in the United States tend to view and discuss life-sustaining treatment in terms of four goals for end-of-life care: (1) extending the length of life, (2) improving the quality of life, (3) maintaining or improving specific biological functions, and (4) assisting the body for a temporary period of time. Patients thought providers were more concerned with extending the length of life than with quality-based outcomes, and patients often discussed life-sustaining treatment as acceptable means for short-term but not long-term use. Many providers indicated that they struggle with conflicting quality-based and physiologic care goals. The findings highlight the importance of eliciting patient preferences not only for specific types of treatment, such as cardiopulmonary resuscitation, but also for end-of-life care goals or desired health-related outcomes, such as maximizing the quantity of life. The findings also suggest that advance directives and patient-provider discussions that focus on acceptable health states and valued life activities may be better suited to patients' end-of-life care goals than those that focus on specific medical interventions.     

End-of-life doulas: A qualitative analysis of interviews with Australian and International death doulas on their role

Death doulas (DD) are working with people at the end of life in varied roles with more clarity needed around their role and place within the health and social care systems. The aim of this work is to explore the DD role in end-of-life care from the perspective of DDs. A sub-group of 20 DDs from a larger quantitative survey participated in semi-structured telephone Skype or Zoom interviews. Interview data were analysed using thematic analysis. Seven themes emerged from the qualitative analysis: what a DD offers, what a DD does, challenges and barriers, occupational preferences, family support, contract of service/fee and regulation. There is a general perception that healthcare professionals (HCP) do not understand what it is that DDs do; thus, the current study has helped to demystify the DD role and potentially reduce suspicion. The lack of a DD business model sees inconsistencies in what services each DD offers and what patients and families can expect. End of life is complex and confusing for patients and families and there is a need to further explore the DD role and how it can work when there are many inconsistencies in working practice. More research is required to look at the interplay among DDs, HCPs and palliative care volunteers in addressing the gaps in care provision and how these relationships might be more seamlessly managed.     

Willingness to complete advance directives among low‐income older adults living in the USA

This study explored low‐income older adults' willingness to (i) complete advance directives, legal documents, whereby an individual designates decision‐makers in the event that they cannot make their own decisions about end‐of‐life treatment preferences, and (ii) the role of social support and other predictors that impact their willingness. This study was conducted as part of a larger study exploring behaviours of advance care planning among low‐income older adults. Out of a total of 255 participants from the original study, this study included 204 participants who did not complete an advance directive for data analysis. A cross‐sectional study using probability random sampling stratified by ethnicity was used. Older adults residing in two supportive housing facilities or who were members of a senior centre in San Diego, California, USA, were interviewed in person between December 2010 and April 2011. Hierarchical logistic regression analysis revealed that the majority of participants (72.1%) were willing to complete advance directives and the factors significantly predicting willingness to complete included self‐rated health, attitudes towards advance decision‐making and social support. Participants with a poorer health status (OR = 1.43, 95% CI = 1.07–1.90) were more willing to complete advance directives. Conversely, participants with higher positive attitudes (OR = 1.18, 95% CI = 1.00–1.39) and greater social support (OR = 1.07, 95% CI = 1.00–1.15) were also more willing to complete advance directives. The findings suggest the importance of ongoing support from healthcare professionals in end‐of‐life care planning. Healthcare professionals can be a source of support assisting older adults in planning end‐of‐life care. Initiating ongoing communication regarding personal value and preference for end‐of‐life care, providing relevant information and evaluating willingness to complete as well as assisting in the actual completion of advance directives will be necessary.     

Managed death in a PACE: pathways in present and advance directives

OBJECTIVES: To test the effect of an innovative method of documenting present and advance health care wishes on the rates of completion and the qualitative choices of health care wishes. DESIGN: Interventional prospective cohort (pre- and post-). SETTING: Program for All-inclusive Care of the Elderly (PACE) site in St. Louis, MO. PARTICIPANTS: Enrolled PACE participants. INTERVENTION: A documentation tool that captures both present and advance directives in a framework of "pathways," blending goals of care with typical procedure-oriented directives. MEASUREMENTS: Data from medical records to calculate rates of health care wishes (HCW) completion, proportions of qualitative choices, and compliance with wishes at death. RESULTS: Baseline prevalences of present directives (PD) and advance directives (AD) were 77% and 36%, respectively, while Do Not Resuscitate (DNR) wishes were documented in 48% of PD and 26% of AD. After implementation of the Pathways Tool, completion rates increased to 99% for both PD and AD. Documented DNR wishes decreased to 38% of PD and increased to 66% of AD. Qualitative choices for care (Longevity vs Function vs Palliation) changed toward a palliation pathway for AD (from 9% to 53%). The rate of dying at home increased from 24% to 65%. Compliance with end-of-life wishes increased from 72% to 96%. These are statistically significant. CONCLUSION: Introduction of a novel pathways method of documenting HCW in a PACE site was associated with increased completion, preferences toward less invasive levels of care at life's end, and increased compliance with participants' wishes and deaths at home. Future research to validate the methodology employed in this intervention should be conducted in other long-term care settings.