Leaving a lasting legacy: A scoping review of ethical wills.

OBJECTIVES: Palliative care guidelines recommend an interdisciplinary approach to address patients' awareness of mortality and need for end-of-life preparation. An ethical will is a nonlegal way to address mortality by communicating a lasting and intangible legacy of values to others. The aim of this scoping review is to clarify the operationalization of ethical wills across disciplines and map the purposes and outcomes of creating an ethical will. METHODS: We followed the Joanna Briggs Institute methodology for scoping reviews. We searched 14 databases in November 2019 and January 2021 without filtering publication date or type. Two reviewers independently screened 1,948 publications. We extracted frequently used terms describing content, audience, format, purpose, and outcomes identified in ethical will creation. RESULTS: Fifty-one publications met inclusion criteria. Six (11.7%) were research articles. Twenty-four (47.1%) were lay literature published within law, estate, and financial planning. Collectively, our included studies defined an ethical will as a nonlegal way to express values, beliefs, life lessons and experiences, wisdom, love, history, hope for the future, blessings, apology, or forgiveness using any format (e.g., text, audio, video) that is meant to be shared with family, friends, or community. The most common purposes were to be remembered, address mortality, clarify life's meaning, and communicate what matters most. Creation provided opportunity to learn about self, served as a gift to both writer and recipient, and fostered generativity and sense of symbolic immortality. SIGNIFICANCE OF RESULTS: Our findings highlight interdisciplinary utilization and a lack of research of ethical wills. This review provides supportive evidence for ethical wills as a way for patients to address mortality, renew intergenerational connections, solidify self, and promote transcendence before their final days. Ethical wills have potential to be incorporated into interdisciplinary palliative care in the future to address psychological symptoms for patients anticipating the end of life.

Advance care planning among ethnic/racial minority older adults: Prevalence of and factors associated with informal talks, durable power of attorney for health care, and living will.

OBJECTIVES: Given the ethnic/racial disparities in end-of-life care, this study aimed to describe and identify factors affecting engagement in three types of advance care planning including informal talk, living will, and durable power of attorney for health care among ethnic/racial minority older adults. Living will refers to any written instruction about medical treatments at the end-of-life while durable power of attorney for health care allows someone to make a health care decision when an individual is incapable of making a reasoned decision. DESIGN: We used a subset of racial/ethnic minority groups drawn from the second wave of the National Health Aging and Trends Survey (n = 543) collected in 2012. RESULTS: The descriptive result showed that informal talk (60%) happened most followed by durable power of attorney for health care (30%) and living will (26.5%) completion. Multivariate logistic regression analyses found that higher education and lower preference toward life-sustaining treatment were associated with engagement in all three types of advance care planning. Having multimorbidity and U.S. born were associated with having informal talk. Non-Hispanic others were more likely to have informal talk and complete durable power of attoreny for health care to compared to Blacks. Furthermore, married older adults were more likely to complete living wills compared to those separated/divorced or never married. CONCLUSIONS: Our findings about different factors affecting engagement in advance care planning indicate that we may need targeted approaches to promote each type of advance care planning for ethnic/racial minority older adults.

Advance directives in patients with head and neck cancer - status quo and factors influencing their creation.

BACKGROUND: Advance Care Planning including living wills and durable powers of attorney for healthcare is a highly relevant topic aiming to increase patient autonomy and reduce medical overtreatment. Data from patients with head and neck cancer (HNC) are not currently available. The main objective of this study was to survey the frequency of advance directives (AD) in patients with head and neck cancer. METHODS: In this single center cross-sectional study, we evaluated patients during their regular follow-up consultations at Germany's largest tertiary referral center for head and neck cancer, regarding the frequency, characteristics, and influencing factors for the creation of advance directives using a questionnaire tailored to our cohort. The advance directives included living wills, durable powers of attorney for healthcare, and combined directives. RESULTS: Four hundred and forty-six patients were surveyed from 07/01/2019 to 12/31/2019 (response rate = 68.9%). The mean age was 62.4 years (SD 11.9), 26.9% were women (n = 120). 46.4% of patients (n = 207) reported having authored at least one advance directive. These documents included 16 durable powers of attorney for healthcare (3.6%), 75 living wills (16.8%), and 116 combined directives (26.0%). In multivariate regression analysis, older age (OR ≤ 0.396, 95% CI 0.181-0.868; p = 0.021), regular medication (OR = 1.896, 95% CI 1.029-3.494; p = 0.040), and the marital status ("married": OR = 2.574, 95% CI 1.142-5.802; p = 0.023; and "permanent partnership": OR = 6.900, 95% CI 1.312-36.295; p = 0.023) emerged as significant factors increasing the likelihood of having an advance directive. In contrast, the stage of disease, the therapeutic regimen, the ECOG status, and the time from initial diagnosis did not correlate with the presence of any type of advance directive. Ninety-one patients (44%) with advance directives created their documents before the initial diagnoses of head and neck cancer. Most patients who decide to draw up an advance directive make the decision themselves or are motivated to do so by their immediate environment. Only 7% of patients (n = 16) actively made a conscious decision not create an advance directive. CONCLUSION: Less than half of head and neck cancer patients had created an advance directive, and very few patients have made a conscious decision not to do so. Older and comorbid patients who were married or in a permanent partnership had a higher likelihood of having an appropriate document. Advance directives are an essential component in enhancing patient autonomy and allow patients to be treated according to their wishes even when they are unable to consent. Therefore, maximum efforts are advocated to increase the prevalence of advance directives, especially in head and neck cancer patients, whose disease often takes a crisis-like course.

How widowhood status relates to engagement in advance care planning among older adults: does race/ethnicity matter?

OBJECTIVES: This study investigated whether and to what extent widowhood status is related to engagement in advance care planning (ACP), and further whether race/ethnicity moderated the relation. METHODS: We analyzed a total of 11,257 older Americans from the Health and Retirement Study using random-effect regression models after controlling for covariates and year-fixed effects. RESULTS: We found that both being a widow/widower ever and having been widowed for a longer period of time were associated with a higher probability of engagement in ACP. Specifically, we found that a one-year increase in the number of years since spousal death was associated with 1.02 (p < 0.05, 95% CI = 1.00, 1.03) changes in the odds ratios of informal ACP; however, inclusion of a quadratic term indicated that this association reversed after the peak. Moreover, our findings suggested a moderating effect of race/ethnicity on the relations of the length of time since spousal loss with engagement in ACP. Specifically, the odds of widowed non-Hispanic Blacks discussing with someone the care or medical treatment (informal ACP) and having a living will (formal ACP) were 0.96 (p < 0.05, 95% CI = 0.93, 1.00) and 0.88 (p < 0.05, 95% CI = 0.79, 0.97) times that of non-widowed non-Hispanic Whites. Compared with their non-Hispanic White counterparts, widowed non-Hispanic Blacks were less likely to engage in ACP, and the negative relations were exacerbated when they became widows/widowers. CONCLUSION: We elaborated on these findings and discussed their implications for understanding the moderating effect of race/ethnicity on the relation between late-life widowhood and engagement in ACP. In order to develop programs that enhance engagement in ACP and reduce racial/ethnic disparities, research must incorporate intersectionality theory with attention to motivations and decision-making style among diverse widows/widowers. The findings from this study could help inform policy makers when developing public health programs and health care reimbursement programs that enhance engagement in ACP among widows/widowers.

[Decision-making support for elderly individuals with dementia in a geriatric health service facility: A questionnaire survey on concrete care methods to draw wills of individuals].

PURPOSE: The purpose of this study was to clarify the care methods used by healthcare staff in service facilities to draw up wills for elderly individuals with dementia in daily life and the final stage in decision-making support. METHODS: A questionnaire survey was conducted among healthcare staff in a geriatric health service facility in August 2020. RESULTS: There were 45 subjects (16 males [35.6%]; 29 females [64.4%]). The average age was 42.2 (±12.3) years old, and the mean number of years of experience in a geriatric health service facility was 17.4 (±10.7) years. Deathbed care was provided to ≥90% of the subjects. A factor analysis of items related to decision making in elderly individuals with dementia revealed the first factor to be "support and communication to draw wills", the second factor to be "support and communication for expression to realize decision making", and the third factor to be "understanding, communication, and family support for decision-making realization." The totals of each of these three factors and "having confidence in care focusing on the viewpoint of elderly individuals with dementia" were significantly different. The correction between the Personhood of Approaches to Dementia Questionnaire Japanese version and the three subscales of decision making in elderly individuals with dementia had a significant coefficient of correlation. CONCLUSION: More polite communication methods are necessary for the formation, expression, and realization of the intentions of elderly individuals with dementia to support their decision making.

Creation of a Living Will in Older Adulthood: Differences by Race and Ethnicity.

The purpose of this study was to examine racial differences in the creation of a living will among older adults, guided by the Andersen model of healthcare utilization. Data from the 2018 National Health and Aging Trends Study were used to examine differences between Black and Hispanic older adults compared to Whites. Weighted bivariate analysis and a weighted logistic regression model were used to determine the presence of a living will. After accounting for predisposing, enabling and need factors, Black and Hispanic older adults were significantly less likely to have a living compared to White older adults. Results indicate the need to examine cultural, historical, and systemic factors that could affect engagement in advance care planning among Black and Hispanic older adults.

The role wills and estate planning played in Anne Lister's life1.

Anne Lister became the owner of Shibden Hall in Halifax in 1826, when her Uncle, James Lister, died. Inheriting Shibden was the culmination of a campaign Anne Lister began as a young woman. Lister's journals reflect her thoughts concerning the actions she took to convince her uncle that she was the best choice to ensure that the Shibden estate remained in the Lister family and how she provided for Ann Walker after their commitment in 1834. The journal entries provide an insider's view of the process she engaged in to accomplish her goals. This paper will discuss the wills Anne Lister (1791-1840) and Ann Walker used in preparing for the disposition of their respective estates following their deaths. Lister used wills and other estate planning measures to protect herself and provide for others. The paper also discusses the shortcomings and missed opportunities for adequate legal advice given to Miss Lister and Miss Walker by their lawyer, his failure to consider and advise on the situations that did occur after Lister's death. Anne Lister was prolific in her instructions to her lawyer about her will, but she did not think of everything. The paper also includes a brief background on English law concerning wills, inheritance, and women's rights evolved over many centuries. Considering the various legal aspects of common law and statutes concerning who could inherit under English law, and the restrictions that existed if an owner died intestate, provide a necessary overview of the importance of planning ahead.

Against autonomy: How proposed solutions to the problems of living wills forgot its underlying principle.

Significant criticisms have been raised regarding the ethical and psychological basis of living wills. Various solutions to address these criticisms have been advanced, such as the use of surrogate decision makers alone or data science-driven algorithms. These proposals share a fundamental weakness: they focus on resolving the problems of living wills, and, in the process, lose sight of the underlying ethical principle of advance care planning, autonomy. By suggesting that the same sweeping solutions, without opportunities for choice, be applied to all, individual patients are treated as population-level groups-as a theoretical patient who represents a population, not the specific patient crafting his or her individualized future care plans. Instead, advance care planning can be improved through a multimodal approach that both mitigates cognitive biases and allows for customization of the decision-making process by allowing for the incorporation of a variety of methods of advance care planning.

[Addressing Issues of Living Will and Power of Attorney in Patients With Dementia - A Cross-Sectional Study Among German General Practitioners]. / Hausärztlicher Umgang mit Patientenverfügung und Vorsorgevollmacht bei Demenzpatienten ­ Eine Querschnittsstudie unter deutschen Hausärzten.

OBJECTIVES: Issues of living will and power of attorney must be addressed as early as possible in dementia patients because of their decreasing independence and ability to act for themselves. The aim of this study was to investigate whether general practitioners (GPs), who usually have long-standing and regular contact with this group of patients, address these precautionary measures and if there is any association between this approach and further communication and educational behaviour of doctors. METHODS: A cross-sectional survey, using standardized, written questionnaires, was conducted in a random sample of 982 GPs in North Rhine-Westphalia in western Germany between October 2017 and January 2018. Descriptive statistical as well as logistic regression analyses were carried out using IBM SPSS Statistics, version 24. RESULTS: A total of 339 GPs responded to the survey questionnaire (response rate: 34.5%). A majority of GPs (70.1%) agreed totally or partially that it was necessary to address their dementia patients on living will and power of attorney; GPs who were more confident in communicating a dementia diagnosis reported addressing the issue of documents for the end of life more frequently (aOR: 1.97; 95%-CI: 1.17-3.33). Older GPs with greater knowledge of regional services for dementia patients also tended to address this topic more frequently. CONCLUSIONS: General practitioners make a major contribution to help dementia patients and their relatives to plan ahead at an early stage of the disease. It can be concluded from our results that GPs' knowledge and experiences about dementia and local services, as well as how to deal with those affected should be improved in order to optimise communication on living will and power of attorney as precautionary measures.

Advance Healthcare Directives: Binding or Informational Value?

Advance directives entail a refusal expressed by a still-healthy patient. Three consequences stem from that fact: (a) advance refusal is unspecific, since it is impossible to predict what the patient's conditions and the risk-benefit ratio may be in the foreseeable future; (b) those decisions cannot be as well informed as those formulated while the disease is in progress; (c) while both current consent and refusal can be revoked as the disease unfolds, until the treatment starts out, advance directives become effective when the patient becomes incapable or unconscious; such decisions can therefore not be revoked at any stage of the disease. Therefore, advance directives are binding for doctors only at the stage of advance treatment planning, i.e., only if they refer to an illness already in progress.

Caregiving preferences and advance care planning among older adults living with HIV.

With the increase in the US of the number of older adults living with HIV, more research is needed to understand the caregiving and advance care planning needs of this population. This descriptive study examined the relationship between social support and caregiving preferences and advance care planning. Older adults living with HIV were recruited from clinics in Los Angeles, CA and New Orleans, LA to complete cross-sectional surveys (n = 154). Logistic regression analyses were modeled to determine the characteristics associated with 1) preference for formal short-term term care, 2) preference for formal long-term care, 3) having at least one contact for emergency care, 4) having an advance directive or living will, and 5) having a healthcare proxy or agent. The mean age was 56.8 years. The majority of participants indicated a preference for informal support for both short-term (73.4%) and long-term care (66.2%), 13.2% had no one they could call for emergency care, 26.0% had an advance directive/living will, and 30.5% had a healthcare proxy/agent. In adjusted models, greater social support was associated with preference for informal short-term care and with having at least one emergency contact. Findings suggest that older adults living with HIV prefer informal sources of support for their caregiving needs despite having small social networks and individuals with limited social networks are particularly vulnerable due to lack of access to caregivers in sudden or unexpected health situations.

Do older adults with Alzheimer's disease engage in estate planning and advance care planning preparation?

OBJECTIVES: This study investigated the estate planning and advance care planning (ACP) of older adults diagnosed with Alzheimer's disease (AD) for the presence of (1) a valid will, (2) a durable power of attorney for health care, and (3) a living will. METHOD: We analyzed 10,273 adults aged 65 and older from the 2012 Health and Retirement Study (HRS) using multilevel logistic regression. RESULTS: We found that a diagnosis of AD was significantly associated with the ACP variables. Older adults with AD were more likely to assign a durable power of attorney for health care and have a written living will than older adults without an AD diagnosis. However, we found no significant association between a diagnosis of AD and having a valid will. These findings were robust when adjusting for demographic and socioeconomic variables. Other factors decreased engagement in estate planning and ACP, including lower socioeconomic status, being male, and being a minority. CONCLUSION: Our findings suggest that a diagnosis of AD is associated with more engagement in ACP for individuals and their families, but important barriers exist for people with fewer resources.

A More Directive Living Will for Older Adult Patients with End-Stage Medical Conditions?

OBJECTIVES: Many older adult patients want to be treated aggressively for reversible conditions, even when their current quality of life is limited; however, most standard living wills focus on the very end of life and provide little guidance to acute care providers (ACPs) should their older adult patient be admitted with a potentially treatable acute condition and temporarily lose capacity. We developed what we believe is a more informational and directive living will for this population. We sought to determine whether ACPs would find our pilot living will more helpful when caring for their older adult patients. METHODS: Convenience sample of members of the Society of Hospital Medicine (SHM). Respondents were asked to compare the pilot living will with their state form and then answer five attitudinal questions. RESULTS: In total, 125 providers from 39 states completed the survey: 86% indicated that the pilot living will better helped them understand their patients' general end-of-life preferences, 87.5% indicated the pilot living will would be more helpful in making specific treatment decisions for their patients, and 85% indicated the pilot living will would better facilitate end-of-life discussions with surrogates. CONCLUSIONS: Our results suggest that it is possible to design a functional advanced directive that better reflects the wishes of the older adult patient who wants to be treated aggressively in selected clinical situations. By more clearly defining these wishes, acute providers (eg, hospitalists, intensivists) can make more informed, patient-centered recommendations to surrogates.

[Desired place of death, living will and desired care at end of life: initial results of a survey of nursing home residents]. / Gewünschter Sterbeort, Patientenverfügungen und Versorgungswünsche am Lebensende: erste Ergebnisse einer Befragung von Pflegeheimbewohnern.

BACKGROUND AND PURPOSE: There is little information about the desired place of death of nursing home residents because they are usually not interviewed in population-based representative surveys. In preparation of support services for advance care planning the kind of care and support that nursing home residents desire needs to be systematically determined. METHOD: From October 2016 to January 2017 the residents of 5 nursing homes, municipally owned by Würzburg, were interviewed face-to-face. RESULTS: Of the residents 42.7% could not be interviewed due to cognitive limitations or dementia. The legal guardians of 63 residents declined participation in the study and 68 residents took part in the survey. Of the respondents 43 stated they wanted to pass away in the nursing home (63.2%). If interviewees had a person of trust or felt at home there, the number of those wanting to pass away in a nursing home was significantly higher. A total of 25 interviewees had either a living will, power of attorney for care, or a health care proxy (36.7%) and 55.3% had informed a person of trust in the nursing home about their desired care, usually a nurse (52.8%) or co-resident (36.1%). A total of 50.0% of respondents had informed their general practitioner and 23.5% had not spoken to anyone about their desired care. Especially nurses were specifically mentioned as the appropriate contact person to record desired care (70.4%). DISCUSSION: Residents view their nursing home as the place for dying in a much more positive light compared to frequent discussions contrasting population surveys and actual places of death. End of life prearrangements should be designed as a dynamic process that include persons of trust, nurses and general practitioners.

[Determining Patient's Wishes and Preferences]. / Ermittlung des Patientenwillens.

It is legally required to determine and respect patient preferences and wishes as much as possible under the circumstances given. This also applies to emergency medicine and intensive care, particularly if a patient is unconscious and is not able to give his consent by him-/herself. According to German law, patients' explicit written statements (advance directive, living will) are mandatory. If no advance directive is available, or if the directive does not match the current medical circumstances, other (oral) statements of the individual patient have to be scrutinized to identify presumed wishes and establish presumed consent. Such wishes are equally binding. The article explicates the role of legal proxies (legal guardians, patient representatives) in determining patients' wishes. Detailed instructions and recommendations are given to medical staff on how to support legal representatives and next of kin with respect to shared decision-making and the process of determining patient preferences. This way, patient autonomy and patients' rights can be protected best.

[Advance Care Planning and its Relevance for Emergency and Intensive Care Medicine]. / Behandlung im Voraus planen ­ Bedeutung für die Intensiv- und Notfallmedizin.

Like in other countries, advance care planning (ACP) is currently being implemented in Germany as a new concept to realise valid and effective advance directives. This concept comprises processes to explore and document individual preferences for future treatment, and to honour them at a time when the person is incapacitated. ACP aims to ensure that patients will be treated according to their preferences when they are no longer capable due to acute health crises or chronic diseases. This paper gives an overview of the concept of ACP with a focus on relevant issues for emergency and intensive care medicine.

[Living wills in a nursing home, guaranteeing freedom of expression]. / Les directives anticipées en Ehpad, accompagner la parole.

The drawing up of a living will in a nursing home for elderly people is a complex process. Not only must the resident think about the end of life, which is not easy, but the institution must be fully aware of the law. Guaranteeing the resident's expression is essential. A study enabled this subject to be reviewed in a nursing home where different players are present around the resident. It enabled professionals to reflect on their practices.

[Advance directives in clinical practice : Living will, healthcare power of attorney and care directive]. / Vorausverfügungen im klinischen Alltag : Patientenverfügung, Vorsorgevollmacht und Betreuungsverfügung.

In clinical practice, situations continuously occur in which medical professionals and family members are confronted with decisions on whether to extend or limit treatment for severely ill patients in end of life treatment decisions. In these situations, advance directives are helpful tools in decision making according to the wishes of the patient; however, not every patient has made an advance directive and in our experience medical staff as well as patients are often not familiar with these documents. The purpose of this article is therefore to explain the currently available documents (e.g. living will, healthcare power of attorney and care directive) and the possible (legal) applications and limitations in the routine clinical practice.

[Advance directives in clinical practice : Living will, healthcare power of attorney and care directive]. / Vorausverfügungen im klinischen Alltag : Patientenverfügung, Vorsorgevollmacht und Betreuungsverfügung.

In clinical practice, situations continuously occur in which medical professionals and family members are confronted with decisions on whether to extend or limit treatment for severely ill patients in end of life treatment decisions. In these situations, advance directives are helpful tools in decision making according to the wishes of the patient; however, not every patient has made an advance directive and in our experience medical staff as well as patients are often not familiar with these documents. The purpose of this article is therefore to explain the currently available documents (e.g. living will, healthcare power of attorney and care directive) and the possible (legal) applications and limitations in the routine clinical practice.