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.     

Educating Dutch General Practitioners in Dementia Advance Care Planning: A Cluster Randomized Controlled Trial

ObjectivesAdvance care planning (ACP) is seldom initiated with people with dementia (PWD) and mainly focuses on medical end-of-life decisions. We studied the effects of an educational intervention for general practitioners (GPs) aimed at initiating and optimizing ACP, with a focus on discussing medical and nonmedical preferences of future care.DesignA single-blinded cluster randomized controlled trial.Setting and participantsIn 2016, 38 Dutch GPs (all from different practices) completed the study. They recruited 140 PWD, aged ≥65 years at any stage and with any type of dementia, from their practice.MethodsIntervention group GPs were trained in ACP, including shared decision-making and role-playing exercises. Control group GPs provided usual care. The primary outcome was ACP initiation: the proportion of PWD that had at least 1 ACP conversation documented in their medical file. Key secondary outcomes were the number of medical (ie, resuscitation, hospital admission) and nonmedical (ie, activities, social contacts) preferences discussed. At the 6-month follow-up, subjects' medical records were analyzed using random effect logistics and linear models with correction for GP clustering.Results38 GP clusters (19 intervention; 19 control) included 140 PWD (intervention 73; control 67). Four PWD (2.9%) dropped out on the primary and key secondary outcomes. After 6 months, intervention group GPs initiated ACP with 35 PWD (49.3%), and control group GPs initiated ACP with 9 PWD (13.9%) [odds ratio (OR) 1.99; P = .002]. Intervention group GPs discussed 0.8 more medical [95% confidence interval (CI) 0.3, 1.3; P = .003] and 1.5 more nonmedical (95% CI 0.8, 2.3; P < .001) preferences per person with dementia than control group GPs.Conclusions and ImplicationsOur educational intervention increased ACP initiation, and the number of nonmedical and medical preferences discussed. This intervention has the potential to better align future care of PWD with their preferences but because of the short follow-up, the GPs' long-term adoption remains unknown.     

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.     

Collaboration Toward Service Excellence: A Union-Management and Empowered Employee Partnership

End-of-life care and its planning by individuals, in concert with their families and professional healthcare givers, pose important social, legal, and ethical issues. The authors evaluate the results of a multi-year (1997-2001) collaborative effort among representatives of Georgia healthcare providers, healthcare payers, and the general public that was designed to (a) improve end-of-life care through a community-focused field effort to increase public awareness, execution, and institutional management of advance directives and (b) impact institutional and state government systems and policies around end-of-life care. The authors conclude that a proactive presence of senior management is integral in implementing systematic change in hospital-based end-of-life care and offer practical recommendations to hospital leaders to affect real change in their institutions.     

Advance Directive Preferences Among Terminally Ill Older Patients and Its Facilitators and Barriers in China: A Scoping Review

ObjectivesTo explore advance directive (AD) preferences and the facilitators and barriers of promoting ADs among terminally ill older patients in China.DesignA scoping review was used to identify key themes in ADs.Setting and participantsStudies from 2007 to 2017 were identified from the MEDLINE and Cochrane libraries. Articles concerning important components of ADs in terminally ill older patients were selected.MeasuresEligible articles concerning important components of ADs in terminally ill older patients were thematically synthesized. Later, implementation evidence was identified from core components.ResultsWe used 13 articles and identified key components in ADs: (1) Chinese cultural characteristics; (2) policy support; (3) advance care planning (ACP); (4) hospice-palliative care (HPC); (5) prognosis disclosure and life-sustaining treatment preference; (6) knowledge about ADs for patients and their families; (7) the prevalence of ADs; (8) implementation of ADs; (9) staff experience and training; and (10) effective communication between patients, their families, and health care professionals. Facilitators in implementing ADs included previous comfort-oriented end-of-life care experience of patients or their families, and the enactment of relevant policy. Barriers included traditional Chinese cultural beliefs; lack of policy; lack of knowledge of ADs, ACP, and HPC; and poor communication between physicians, patients, and family members.Conclusions/ImplicationsChinese patients still showed positive preferences toward ADs. The implementation of ADs could be promoted through public education about ADs, the learning of ACP and HPC, and relevant policy development in China.     

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.     

The Effect of Advance Directive Completion on Hospital Care Among Chronically Homeless Persons: a Prospective Cohort Study

Advance care planning is relevant for homeless individuals because they experience high rates of morbidity and mortality. The impact of advance directive interventions on hospital care of homeless individuals has not been studied. The objective of this study was to determine if homeless individuals who complete an advance directive through a shelter-based intervention are more likely to have information from their advance directive documented and used during subsequent hospitalizations. The advance directive included preferences for life-sustaining treatments, resuscitation, and substitute decision maker(s). A total of 205 homeless men from a homeless shelter for men in Toronto, Canada, were enrolled in the study and offered an opportunity to complete an advance directive with the guidance of a trained counselor from April to June 2013. One hundred and three participants chose to complete an advance directive, and 102 participants chose to not complete an advance directive. Participants were provided copies of their advance directives. In addition, advance directives were electronically stored, and hospitals within a 1.0-mile radius of the shelter were provided access to the database. A prospective cohort study was performed using chart reviews to ascertain the documentation, availability, and use of advance directives, end-of-life care preferences, and medical treatments during hospitalizations over a 1-year follow-up period (April 2013 to June 2014) after the shelter-based advance directive intervention. Chart reviewers were blinded as to whether participants had completed an advance directive. The primary outcome was documentation or use of an advance directive during any hospitalization. The secondary outcome was documentation of end-of-life care preferences, without reference to an advance directive, during any hospitalization. After unblinding, charts were studied to determine whether advance directives were available, hospital care was consistent with patient preferences as documented in advance directives, and hospital resource utilization during admission. During the 1-year follow-up period, 38 participants who completed an advance directive and 37 participants who did not complete an advance directive had at least one hospitalization (36.9 vs. 36.2 %, p?=?0.93). Participants who completed an advance directive were significantly more likely to have documentation or use of an advance directive in hospital, compared to participants who did not complete an advance directive (9.7 vs. 2.9 %, p?=?0.047). Without reference to an advance directive, documentation of end-of-life care preferences occurred in 30.1 vs. 30.4 % of participants, respectively (p?=?0.96), most often due to documentation of code status. There were no significant differences in resource utilization between admitted patients who completed and did not complete an advance directive. In conclusion, homeless men who complete an advance directive through a shelter-based intervention are more likely to have their detailed care preferences documented or used during subsequent hospitalizations.     

Conducting an advance care planning group among older adults living in residential care homes: An initiative of social workers in Hong Kong

This study aimed to examine the effects of an advance care planning (ACP) group which was developed by social workers in Hong Kong for older adults. A quasi-experimental study was conducted. Participants were recruited from 14 residential care homes. The ACP intervention group included 59 participants for analyses, and the control group 58. Three major outcomes were measured at two time points: (a) Quality-of-life concerns, (b) End-of-life preference and (c) Advance directive (AD)-related outcomes (awareness of AD, AD completion, willingness to complete AD and communication with family members about AD). Findings indicate that the ACP group enhanced participants’ awareness of AD compared with the control group. Participants were also more willing to complete AD, and more participants communicated with family members about AD after participating in the ACP group. No significant difference was found in other outcomes. This study demonstrates the efforts of social workers in promoting ACP in Hong Kong and the effectiveness of an ACP group for enhancing older adults’ awareness of AD. Findings support the role of social workers in promoting ACP for deprived groups, like frail older adults. The ACP group could be considered a first step in enhancing older adults’ awareness of and willingness to discuss end-of-life issues. Further follow-up is required to develop individualised ACP for older adults.     

End-of-Life Decisions in the Home Care Setting

SUMMARY

Advance directives, which allow a person to record preferences for end-of-life care in case of incapacity, have been underused in home care. In this study, thirty home care clients, who were either elderly or persons with AIDS, were offered the opportunity to execute individualized advance directives and to include issues of specific importance to them. Twenty-three completed and signed their documents; nearly all expressed wishes, fears, and concerns that are both not always adequately addressed and not necessarily capable of “yes” or “no” answers. These are discussed and explained, with guidelines for clinicians.     

End-of-Life Care Issues: A Personal,Economic, Public Policy,and Public Health Crisis

Advance directive documents are free, legal, and readily available, yet too few Americans have completed one. Initiating discussions about death is challenging, but progress in medical technology, which leads to increasingly complex medical care choices, makes this imperative.Advance directives help manage decision-making during medical crises and end-of-life care. They allow personalized care according to individual values and a likely reduction in end-of-life health care costs.We argue that advance directives should be part of the public health policy agenda and health reform.IS END-OF-LIFE CARE A MATTER of personal values, economics, public policy, or a looming public health crisis? Actually, it is all of these. But when we consider the population’s demographic shift to older adults, which is associated with chronic illness and multiple comorbidities, the enormous health care costs consumed in end-of-life care, and complex ethical issues, it is time for the public health community to put this issue squarely on its agenda. Increasing the rate of completion of advance directives is a key step, and specific policy strategies can be identified to accomplish this objective.Advance directives were created by federal and state law to ensure autonomy of patients who eventually become unable to make decisions for themselves.1,2 Advance directives are free, legal, and straightforward forms that can be completed in a few minutes. Typically, advance directives address several areas regarding end-of-life care when a person becomes unable to make medical decisions for himself or herself. First, a person defines the amount and kind of care he or she might receive under various medical circumstances. Second, a person designates a health care agent to make medical decisions when the person can no longer do so. Third, advance directives may also address other end-of-life care issues including organ donation, whole body donation to medical schools, funeral and burial arrangements, legacy recordings for posterity, and—in 3 states (Oregon, Washington, and Montana)—assisted dying.     

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.     

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.     

Advance Directive Completion and Its Associated Factors Among Older Chinese Americans

ObjectivesTo examine the factors of advance directive (AD) completion among older Chinese Americans.DesignCross-sectional survey.Setting and ParticipantsData came from 435 Chinese Americans aged 55 years and older living in 2 metropolitan areas through self-administered questionnaires and research assistant–administered interviews in 2018. Participants' average age was 75 years (standard deviation = 9.4).MethodsLogistic regression was used to examine factors associated with AD completion.ResultsApproximately 14% of participants completed an AD. Older age [odds ratio (OR) 1.07, 95% confidence interval (CI) 1.02-1.12], higher level of acculturation (OR 2.15, 95% CI 1.39-3.33), higher expectation for intergenerational support (OR 1.52, 95% CI 1.02-2.27), and having US citizenship (OR 3.02, 95% CI 1.26-7.23) were positively associated with AD completion. Physical and mental health needs were not significantly associated with AD completion.Conclusions and ImplicationsThis study is among the first focusing on AD completion among Chinese Americans, one of the fastest-growing older minority populations in the United States. Findings highlight the influence of socioeconomic and cultural factors on AD completion and illustrate the importance of developing culturally sensitive interventions to promote end-of-life care decision making among older Chinese Americans.     

Front-Line Hospice Staff Perceptions of Barriers and Opportunities to Discussing Advance Care Planning With Hospice Patients and Their Families

ObjectivesTo understand the facilitators and barriers to hospice staff engagement of patients and surrogates in advance care planning (ACP) conversations.DesignQualitative study conducted with purposive sampling and semistructured interviews using ATLAS.ti software to assist with template analysis.Settings and ParticipantsParticipants included 51 hospice professionals (31 clinicians, 13 leaders, and 7 quality improvement administrators) from 4 geographically distinct nonprofit US hospices serving more than 2700 people.MeasuresInterview domains were derived from the implementation science framework of Capability, Opportunity, Motivation, and Behavior (COM-B), with additional questions soliciting recommendations for behavior change. Differences in themes were reconciled by consensus. The facilitator, barrier, and recommendation themes were organized within the COM-B framework.ResultsCapability was facilitated by interdisciplinary teamwork and specified clinical staff roles and inhibited by lack of self-perceived skill in engaging in ACP conversations. Opportunities for ACP occurred during admission to hospice, acute changes, or deterioration in patient condition. Opportunity-related environmental barriers included time constraints such as short patient stay in hospice and workload expectations that prevented clinicians from spending more time with patients and families. Motivation to discuss ACP was facilitated by the employee’s goal of providing personalized, patient-centered care. Implicit assumptions about patients’ and families’ preferences reduced staff’s motivation to engage in ACP. Hospice staff made recommendations to improve ACP discussions, including training and modeling practice sessions, earlier introduction of ACP concepts by clinicians in prehospice settings, and increasing workforce diversity to reflect the patient populations the organizations want to reach and cultural competency.Conclusions and ImplicationsEven hospice staff can be uncomfortable discussing death and dying. Yet staff were able to identify what worked well. Solutions to increase behavior of ACP engagement included staff training and modeling practice sessions, introducing ACP prior to hospice, and increasing workforce diversity to improve cultural competency.     

Adherence to “No Transfer to Hospital” Advance Directives Among Nursing Home Residents

ObjectivesMany older adults in long-term care (LTC) experience acute health crises but are at high risk of transfer distress and in-hospital morbidity and mortality. Residents often complete advance directives (ADs) regarding future care wishes, including directives for hospital transfers. This study aims to estimate the prevalence of, and adherence to, “no transfer to hospital” ADs in LTC, and to explore the circumstances leading to transfers against previously expressed directives.DesignWe conducted a mixed methods study in 10 nursing homes in Nova Scotia, Canada. A total of 748 resident charts and Emergency Health Services (EHS) database notes were reviewed from 3 time periods spanning implementation of a new primary care model, Care by Design (CBD).MeasuresADs were divided into those requesting transfer to hospital vs on-site management only, which were then analyzed in relation to actual hospital transfers. Reasons for EHS calls, management, and qualitative data were derived from the EHS database. Resident variables were obtained from LTC charts. Measures were compared between time periods.ResultsADs were complete in 92.4% of charts. Paramedics were called for 80.5% of residents, and 73.6% were transferred to hospital, 51.3% of whom had explicit ADs to the contrary. The majority of those were transferred for fall-related injuries, followed by medical illness. Unclear care plans, symptom control, and perceived need for investigations and procedures all influenced transfer decisions.Conclusions/ImplicationsThe use of “no transfer to hospital” directives did not appear to impact the number of residents being transferred to acute care. Half of those transferred to hospital had explicit ADs to the contrary, largely driven by fall-related injury. The high incidence of injury-related transfers highlights an important gap in advance care planning. Clarifying transfer preferences for injury management in advance directives may lead to better end-of-life experiences for residents and improve effective resource utilization.     

Advance care directive prevalence among older Australians and associations with person‐level predictors and quality indicators

BackgroundAdvance care planning (ACP) conversations may result in preferences for medical care being documented.ObjectiveTo explore the uptake and quality of advance care directives (ACDs) among older Australians accessing health and aged care services, by overall ACP documentation prevalence, person‐level predictors and ACD quality indicators.Design and SettingNational multi‐centre health record audit in general practices (GP), hospitals and residential aged care facilities (RACF).ParticipantsA total of 4187 people aged ≥65 years attending their GP (n = 676), admitted to hospital (n = 1122) or residing in a RACF (n = 2389).Main Outcome MeasuresACP documentation prevalence by setting and type including person‐completed ACDs and non‐ACD documents (completed by a health professional or someone else); person‐level predictors and quality indicators of ACDs.ResultsOverall ACP documentation prevalence was 46.5% (29.2% weighted). ACD prevalence was 25.3% (14.2% weighted). Unweighted ACD prevalence was higher in RACFs (37.7%) than in hospitals (11.1%) and GPs (5.5%). 35.8% of ACP documentation was completed by a health professional (9.7% weighted), and 18.1% was completed by someone else (10.6% weighted). Having an ACD was positively associated with being female, older, having two or more medical conditions, receiving palliative care, being divorced/separated and being in a RACF. Only 73% of ACDs included full name, signature, document date and witnessing.Conclusions and ContributionLow ACP documentation prevalence and a lack of accessible, person‐completed and quality ACDs represent an important ACP implementation issue. Low prevalence is complicated by poor document quality and a higher prevalence of documents being completed by someone other than the person.