Stages of change for the component behaviors of advance care planning

OBJECTIVES: To develop stages‐of‐change measures for advance care planning (ACP), conceptualized as a group of interrelated but separate behaviors, and to use these measures to characterize older persons' engagement in and factors associated with readiness to participate in ACP. DESIGN: Observational cohort study. SETTING: Community. PARTICIPANTS: Persons aged 65 and older recruited from physician offices and a senior center. MEASUREMENTS: Stages of change for six ACP behaviors: completion of a living will and healthcare proxy, communication with loved ones regarding use of life‐sustaining treatments and quantity versus quality of life, and communication with physicians about these same issues. RESULTS: Readiness to participate in ACP varied widely across behaviors. Whereas between approximately 50% and 60% of participants were in the action or maintenance stage for communicating with loved ones about life‐sustaining treatment and completing a living will, 40% were in the precontemplation stage for communicating with loved ones about quantity versus quality of life, and 70% and 75% were in the precontemplation stage for communicating with physicians. Participants were frequently in different stages for different behaviors. Few sociodemographic, health, or psychosocial factors were associated with stages of change for completing a living will, but a broader range of factors was associated with stages of change for communication with loved ones about quantity versus quality of life. CONCLUSION: Older persons show a range of readiness to engage in different aspects of ACP. Individualized assessment and interventions targeted to stage of behavior change for each component of ACP may be an effective strategy to increase participation in ACP.     

Initiating advance care planning on end-of-life issues in dementia: Ambiguity among UK and Dutch physicians

BackgroundIn dementia, advance care planning (ACP) of end-of-life issues may start as early as possible in view of the patient’s decreasing ability to participate in decision making. We aimed to assess whether practicing physicians in the Netherlands and the United Kingdom who provide most of the end-of-life care, differ in finding that ACP in dementia should start at diagnosis.MethodsIn a cross-sectional study, we surveyed 188 Dutch elderly care physicians who are on the staff of nursing homes and 133 general practitioners from Northern Ireland. We compared difference by country in the outcome (perception of ACP timing), rated on a 1–5 agreement scale. Regression analyses examined whether a country difference can be explained by contrasts in demographics, presence, exposure and role perceptions.ResultsThere was wide variability in agreement with the initiation of ACP at dementia diagnosis, in particular in the UK but also in the Netherlands (60.8% agreed, 25.3% disagreed and 14.0% neither agreed, nor disagreed). Large differences in physician characteristics (Dutch physicians being more present, exposed and adopting a stronger role perception) hardly explained the modest country difference. The perception that the physician should take the initiative was independently associated with agreeing with ACP at diagnosis.ConclusionsThere is considerable ambiguity about initiating ACP in dementia at diagnosis among physicians practicing in two different European health care systems and caring for different patient populations. ACP strategies should accommodate not only variations in readiness to engage in ACP early among patient and families, but also among physicians.     

Advance care planning and end-of-life care for hospitalized nursing home residents

OBJECTIVES: To describe advance care planning (ACP) and end-of-life care for nursing home residents who are hospitalized in the last 6 weeks of life. DESIGN: Constant comparative analysis of deceased nursing home resident cases.SETTING: A not-for-profit Jewish nursing home. PARTICIPANTS: Forty-three deceased residents hospitalized within the last 6 weeks of life at a tertiary medical center. MEASUREMENTS: Trained nurse reviewers abstracted data from nursing home records and gerontological advanced practice nurse field notes. Clinical and outcome data from the original study were used to describe the sample. Data were analyzed using the constant comparative method and validated in interviews with a gerontological advanced practice nurse and social worker. RESULTS: The analysis revealed distinct characteristics and identifiable transition points in ACP and end-of-life care with frail nursing home residents. ACP was addressed by social workers as part of the nursing home admission process, focused primarily on cardiopulmonary resuscitation preference, and reviewed only after the crisis of acute illness and hospitalization. Advance directive forms specifying preferences or limitations for life-sustaining treatment contained inconsistent language and vague conditions for implementation. ACP review generally resulted in gradual limitation of life-sustaining treatment. Transition points included nursing home admission, acute illness or hospitalization, and decline toward death. Relatively few nursing home residents received hospice services, with most hospice referrals and palliative care treatment delayed until the week before death. Most residents in this sample died without family present and with little documented evidence of pain or symptom management. CONCLUSION: Limiting discussion of advance care plans to cardiopulmonary resuscitation falsely dichotomized and oversimplified the choices about medical treatment and care at end-of-life, especially palliative care alternatives, for these older nursing home residents. Formal hospice services were underutilized, and palliative care efforts by nursing home staff were often inconsistent with accepted standards. These results reinforce the need for research and program initiatives in long-term care to improve and facilitate individualized ACP and palliative care at end of life.     

End‐of‐life communication in Korean older adults: With focus on advance care planning and advance directives

The present article aimed to provide a comprehensive review of current status of end‐of‐life (EOL) care and sociocultural considerations in Korea, with focus on the EOL communication and use of advance directives (AD) in elderly Koreans. Through literature review, we discuss the current status of EOL care and sociocultural considerations in Korea, and provide a look‐ahead. In Korea, patients often receive life‐sustaining treatment until the very end of life. Advance care planning is rare, and most do‐not‐resuscitate decisions are made between the family and physician at the very end of patient's life. Koreans, influenced mainly by Confucian tradition, prefer a natural death and discontinuation of life‐sustaining treatment. Although Koreans generally believe that death is natural and unavoidable, they tend not to think about or discuss death, and regard preparation for death as unnecessary. As a result, AD are completed by just 4.7% of the general adult population. This situation can be explained by several sociocultural characteristics including opting for natural death, wish not to burden others, preference for family involvement and trust in doctor, avoidance of talking about death, and filial piety. Patients often receive life‐sustaining treatment until the very EOL, advance care planning and the use of AD is not common in Korea. This was related to unique sociocultural characteristics of Korea. A more active role of physicians, development of a more deliberate EOL discussion process, development of culturally appropriate AD and promotion of advance care planning might be required to provide good EOL care in Korea. Geriatr Gerontol Int 2016; 16: 407‐415.     

Prevalence and correlates of advance care planning among Australian hospital inpatients

The prevalence and factors associated with advance care planning (ACP) documents for Australian public hospital inpatients were determined through cross-sectional study of 123 Victorian hospitals between July 2016 and December 2018. Of the 611 786 included patients, 2.9% had an ACP document. Odds increased significantly in those comorbid, unpartnered, regional and >5 admissions, which supports future ACP conversations and document creation.     

From advance directives to advance care planning: current legal status, ethical rationales and a new research agenda

This paper uses a case example to review the current legal status of advance directives, as well as their ethical rationale. We draw attention to ongoing efforts to institutionalize advance directives, and to some of the tractable and intractable reasons why advance directives are ineffective. We then introduce the concept of advance care planning, and argue that we should not assume that advance care directives have a place in this process. We conclude by offering three reasons why this assumption may operate, and by suggesting that contingency and uncertainty may sometimes overwhelm all rational approaches to medical care.     

Perspectives on advance care planning and palliative care among adults with congenital heart disease

Background: Patients with adult congenital heart disease (ACHD) report that ad‐ vance care planning (ACP) is important, and that they want information about prog‐ nosis. However, recognizing importance and being willing to participate are different constructs, and how and when to begin ACP and palliative care discussions remains ill‐defined.
Methods: We conducted a cross‐sectional survey of 150 consecutive outpatients to assess willingness to participate in ACP, with whom, and important barriers and facili‐ tators to these discussions.
Results: The majority of participants (69%) reported being willing to participate in ACP; 79% to have a meeting to discuss goals and care preferences; and 91% to speak to a clinician who specializes in palliative care. Being married and anticipating a shorter lifespan were associated with increased reported willingness to participate in ACP. The health care provider with whom most participants preferred to have these discussions was their ACHD clinician. Participants identified important barriers and facilitators to these discussions.
Conclusion: Patients with ACHD report being willing to participate in ACP and pallia‐ tive care discussions. Patients prefer to have these discussions with their ACHD clini‐ cians, thus ACHD clinicians need to be prepared to address these issues as part of routine care.     

Agreement between older persons and their surrogate decision-makers regarding participation in advance care planning

OBJECTIVES: To examine agreement between older persons and their surrogates regarding participation in advance care planning (ACP). DESIGN: Observational cohort study. SETTING: Community. PARTICIPANTS: Persons aged 65 and older and the individual they identified as most likely to make treatment decisions on their behalf. MEASUREMENTS: Older persons were asked about participation in four activities: completion of living will, completion of healthcare proxy, communication regarding views about life‐sustaining treatment, and communication regarding views about quality versus quantity of life. Surrogates were asked whether they believed the older person had completed these activities. RESULTS: Of 216 pairs, 81% agreed about whether a living will had been completed (κ=0.61, 95% confidence interval (CI) 0.51–0.72). Only 68% of pairs agreed about whether a healthcare proxy had been completed (κ=0.39, 95% CI 0.29–0.50), 64% agreed about whether they had communicated regarding life‐sustaining treatment (κ=0.22, 95% CI 0.09–0.35), and 62% agreed about whether they had communicated regarding quality versus quantity of life (κ=0.23, 95% CI 0.11–0.35). CONCLUSION: Although agreement between older persons and their surrogates regarding living will completion was good, agreement about participation in other aspects of ACP was fair to poor. Additional study is necessary to determine who is providing the most accurate report of objective ACP components and whether agreement regarding participation in ACP is associated with greater shared understanding of patient preferences.     

Disparities in advance care planning among older US immigrants

Background

Despite known racial disparities in advance care planning (ACP), little is known about ACP disparities experienced by US immigrants.

Methods

We used data from the 2016 wave of the Health and Retirement Study. We defined ACP engagement as self-reported end-of-life (EOL) discussions, designation of a power of attorney (DPOA), documented living will, or “any” of the three behaviors. Immigration status was determined by respondent-reported birth outside the United States. Time in the United States was calculated by subtracting the year of arrival in the United States from the survey year of 2016. We used multivariable logistic regression to estimate the association between ACP engagement and immigration status and the relationship of acculturation to ACP engagement, adjusting for sociodemographics, religiosity, and life expectancy.

Results

Of the total cohort (N = 9928), 10% were immigrants; 45% of immigrants identified as Hispanic. After adjustment, immigrants had significantly lower adjusted probability of any ACP engagement (immigrants: 74% vs. US-born: 83%, p < 0.001), EOL discussions (67% vs. 77%, p < 0.001), DPOA designation (50% vs. 59%, p = 0.001) and living will documentation (50% vs. 56%, p = 0.03). Among immigrants, each year in the United States was associated with a 4% increase in the odds of any ACP engagement (aOR 1.04, 95% CI 1.03–1.06), ranging from 36% engaged 10 years after immigration to 78% after 70 years.

Conclusion

ACP engagement was lower for US immigrants compared to US-born older adults, particularly for those that recently immigrated. Future studies should explore strategies to reduce disparities in ACP and the unique ACP needs among different immigrant populations.