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.

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.

Understanding the Role of Knowledge in Advance Care Planning Engagement.

CONTEXT: Advance care planning remains underutilized. A better understanding of the role of education in promoting engagement is needed. OBJECTIVES: To examine advance care planning knowledge and its relationship to engagement in middle-aged and older adults. METHODS: This cross-sectional study utilized baseline data from 921 participants age ≥55 years enrolled in the STAMP randomized controlled trial, including a knowledge scale consisting of seven questions regarding the purpose and mechanisms of advance care planning and measures of participation. RESULTS: Only 11.9% of participants answered all 7 questions correctly, and 25.6% of participants answered ≤3 correctly (defined as "low knowledge"). Low knowledge was independently associated with male gender (odds ratio [OR] 2.1, 95% confidence interval [CI]: 1.5, 3.0), non-white race (OR 1.5, 95% CI: 1.1, 2.2), older age (OR 2.2, 95% CI: 1.4, 3.4), lower income (OR 1.5, 95% CI: 1.1, 2.1), and lower education level (OR 2.9, 95% CI: 2.0, 4.1). Higher knowledge was independently associated with communicating with a loved one about quality versus quantity of life (OR 1.7, 95% CI: 1.2, 2.4) and with living will completion (OR 1.6, 95% CI: 1.0, 2.5), but not with healthcare agent assignment. Factors including race and education remained associated with engagement after accounting for knowledge. CONCLUSION: Knowledge deficits regarding advance care planning are common and associated with the same sociodemographic factors linked to other healthcare disparities. While improving knowledge is an important component of intervention, it is unlikely sufficient in and of itself to increase engagement.

Racial Disparities of Possessing Healthcare Power Attorney and Living Will Among Older Americans: Do SES and Health Matter?

CONTEXT: Most previous studies considered advance directives (AD) as one outcome, which conceals possible variations of individuals' decisions on two AD documents-living will (LW) and durable power of attorney for health care (PA). OBJECTIVES: To address this issue, this study examined how completions of PA and LW are associated with race, and whether SES and health can partially explain the racial disparities of AD possession. METHODS: The sample included 9902 older adults from the 2016 wave of the Health and Retirement Study. AD completion was coded as a four-category variable, including no PA or LW, no PA, no LW, and both PA and LW. Race was categorized as non-Hispanic white, non-Hispanic black, Hispanic, and Asian or Native American. Socioeconomic status (SES) was measured by education and household wealth. Health was indicated by chronic conditions and functional limitations. Multinomial logistic regression models were used to examine the racial effects of AD possession and the effects of SES and health conditions. RESULTS: Older adults who only have PA or only have LW significantly differed in racial identity, SES and health. The regression results show that being a racial minority was associated with a lower likelihood to have both ADs and only PA. SES partially buffered racial disparities in AD possession, while the moderation of health was not consistently significant. DISCUSSION: The findings highlight the importance of examining the completions of two AD documents and indicate the necessity of developing distinct and concrete strategies to promote the completion of PA and LW.

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.

The Supreme Court of India on euthanasia: Too little, too late.

On Friday, March 9, 2018 the five-judge Constitution Bench (CB) of the Supreme Court of India (SCI) chaired by Dipak Misra, the Chief Justice of India, pronounced its judgment (1) (henceforth CC judgment) granting, for the first time in India, legal recognition to "advanced medical directives" or "living wills", ie, a person's decision communicated in advance on withdrawal of life-saving treatment under certain conditions, which should be respected by the treating doctor/s and the hospital. It also reiterates the legal recognition of the right to "passive euthanasia"; and draws upon Article 21 - the right to life - of the Constitution of India (henceforth Constitution) (2) interpreting robustly that the "right to life" includes the "right to die with dignity". Justices Misra and Khanwilkar disposed of the writ petition filed in 2005 by Common Cause (3) (henceforth CC petition) saying, "The directive and guidelines shall remain in force till the Parliament brings a legislation in the field" (1:p 192).

Ordem de não reanimar sob a perspectiva depacientes oncológicos e seus familiares / Do not resuscitate orders from the perspective of oncology patients and their relatives

O presente estudo objetivou verificar a perspectiva dos pacientes oncológicos e familiares em relação à Ordem deNão Reanimar (ONR). Foram entrevistados 104 pacientes oncológicos e 100 familiares que frequentavam o serviço deoncologia do Hospital Universitário Santa Terezinha, Joaçaba, Santa Catarina, Brasil, no ano de 2014. Os termos ONReram desconhecidos por 81,73% dos pacientes e por 82% dos familiares. Após esclarecimento do significado, 65,4%dos pacientes e 67% dos familiares mostraram-se favoráveis à ONR em caso de parada cardiorrespiratória de pacienteem fase final de doença terminal. A decisão compartilhada entre pacientes, familiares e médico obteve a preferência de58,65% dos pacientes e de 73% dos familiares, por iniciativa do médico que acompanha o tratamento, segundo 60,58%dos pacientes e 72% dos familiares. A realização de sua própria ONR foi considerada importante por 63,47% dospacientes e 68,63% dos familiares e a implantação da Ordem de não reanimar no Brasil por 75% dos pacientes e 74%dos familiares. Concluiu-se que a maioria dos pacientes e familiares desconhecia os termos ordem de não reanimar, masera favorável à implantação do procedimento no Brasil, à realização pessoal por meio de decisão compartilhada e quea abordagem ocorresse durante as consultas médicas. Os resultados deste estudo permitem inferir a necessidade de seampliar a discussão sobre a Ordem de Não Reanimar, no âmbito ético e social, com a finalidade de se emitir orientaçõespara assegurar a autonomia dos pacientes que se encontram na terminalidade da vida(AU)

This study aims to determine the perspective of oncological patients and their families in relation to the Do Not ResuscitateOrder (DNR). A questionnaire was applied to 104 oncological patients and 100 relatives, who were attended to by theoncology service of Hospital Universitário Santa Terezinha, Joaçaba, Santa Catarina, Brazil in 2014. The term DNR wasunknown by 81.73% of the patients and by 82% of the relatives. After clarifying its meaning, 65.4% of patients and 67%of the relatives were favorable towards DNR in the event of cardiorespiratory failure of the patient, in the final phase ofthe terminal disease. A shared decision between the patients, their relatives, and the doctor was preferred by 58.65%of patients and 73% of the relatives; a decision prompted by the initiative of the doctor accompanying the treatmentwas preferred by 60.58% of the patients and 72% of the relatives. The execution of the DNR by the patient him/herselfwas considered important by 63.47% of the patients and 68.63% of the relatives, and the introduction of the DNR inBrazil was considered important by 75% of the patients and 74% of the relatives. It is concluded that the majority ofthe patients and relatives did not know the term “Do Not Resuscitate Order”, but were favorable to the introduction ofthe procedure in Brazil, the personal realization through the shared decision, and that the approach would occur duringmedical visits. The results of this study enable us to infer the need to broaden the discussion on DNR, in the ethical socialscope, in order to issue guidance to ensure the autonomy of patients who are in the terminal phases of life(AU)

O registro das Diretivas Antecipadas de Vontade:opinião dos tabeliães da cidade de Porto Alegre - RS / dvance Directive of Will: opinion of notaries of Porto Alegre city/RS

A Diretiva Antecipada de Vontade diz respeito à manifestação de vontade de forma antecipada, em relação aos cuidadose tratamentos para momentos em que a pessoa está incapacitada de se manifestar. O objetivo deste estudo foi verificarcomo estavam ocorrendo estas manifestações em tabelionatos e se os notários estavam cientes do seu conteúdo,abrangência e necessidades da sociedade em registrá-la. Formulou-se um questionário para entrevista semiestruturada,em uma pesquisa qualitativa, para verificar como estão ocorrendo estes procedimentos nos tabelionatos de PortoAlegre/RS. Foram entrevistados os 12 responsáveis pelos respectivos tabelionatos que manifestaram, na sua maioria(66,7%), conhecer as Diretivas Antecipadas de Vontade, mas pouco registrá-las (registros inferiores à 3 por tabelionato).Verificou-se, portanto, que apesar das DAV terem emergido do anseio da sociedade, ainda é pouca a procura nostabelionatos. Ressaltou-se que, embora não haja obrigatoriedade deste registro, nem lei que imponha esta necessidadeaos tabeliães, há segurança jurídica atribuída aos atos firmados perante notário, o que deveria configurar uma maiorprocura por parte dos interessados, nos órgãos competentes.(AU)

The Advance Directive of Will (ADW), concerns the manifestation of will in advance in relation to care and treatmentduring times when the person is unable to manifest themselves. The aim of this study was to determine how these eventswere occurring in notary public offices, if the notaries were aware of its content, comprehensiveness and the needs ofsociety to put it on record. A questionnaire was formulated for a semi-structured interview, part of a qualitative study,to verify how procedures are being executed at notary public offices in Porto Alegre/ RS. Twelve people responsiblefor notary public offices were interviewed, the majority (66,7%) of whom knew about the Advance Directive of Will(ADW); however, a low number of registrations occurred (less than three registrations per notary public office). It can behighlighted that, despite the fact that ADWs were created in response to needs posed by society, this instrument is littleused. It was highlighted that, although registration is not mandatory and that there is not a law which imposes this needon notary public officials, there is a legal security aspect attributed to acts signed before notary public officials, whichshould promote a higher demand by the interested parties at competent organs.(AU)

Why I wrote my advance decision to refuse life-prolonging treatment: and why the law on sanctity of life remains problematic.

This paper, pursuing themes indefatigably defended in this journal and elsewhere by Professors Jenny and Celia Kitzinger, explains what led me to write my own advance decision (AD) to refuse life-prolonging treatment if I become legally incapacitated to make my own healthcare decisions for longer than 3 months and am medically assessed as very unlikely to regain such legal capacity. I attach my Advance Decision to Refuse Life Prolonging Treatment to the online version of this paper for comment advice and possible general interest. I argue that while a Supreme Court judgement in 2013, followed by a Court of Protection judgement in 2015 greatly ameliorate my earlier concerns about excessive judicial emphasis on the sanctity of life, certain current requirements in the Code of Practice to the Mental Capacity Act 2005 and in the Rules of the Court of Protection, especially Practice Direction 9E, concerning permanent vegetative state and minimally conscious state, seem clearly to contradict aspects of that Supreme Court judgement. If the logical implications of those legal requirements were thoroughly implemented medical practice would be substantially and undesirably skewed towards provision of treatments to prolong life that are unwanted, non-beneficial and wasteful of healthcare resources. I urge that these legal requirements are modified to make them consistent with the Supreme Court's judgement in Aintree v James.

Bioética e processos de religiosidade entre os pacientes com doenças terminais no Brasil / Bioethics and religious processes among terminally ill patients in Brazil

Os avanços tecnocientíficos das últimas décadas contribuíram para o aumento do número de pacientes com doenças terminais no mundo. Em decorrência da milenar conexão entre a fase de terminalidade de vida e os processos espiritualistas, esse fato assumiu aspectos peculiares no Brasil, país em que o número de segmentos religiosos/espiritualistas multiplicou-se nas últimas décadas. Este trabalho procura mostrar que a diversificação das necessidades de pacientes brasileiros com referência ao bemestar espiritual na fase final da vida pode gerar dilemas bioéticos novos para o profissional da saúde que não conheça os fundamentos das principais correntes espiritualistas do país. Defendendo que tal conhecimento é ferramenta útil para o profissional da saúde que quer observar os princípios da beneficência e do respeito à autonomia do paciente, o texto disponibiliza algumas orientações básicas das principais linhas espiritualistas brasileiras sobre os processos da morte e do morrer...

The techno scientific advances in the last decades have contributed to increase the number of terminally ill patients in the world. Given the millenary connection between life's terminal phase and spiritualist processes, this fact has gained peculiar shades in Brazil, a country where the number of religious/spiritualist-oriented segments has also multiplied in the last decades. This study seeks to demonstrate that the diversification of Brazilian terminally ill patients' needs regarding the spiritual wellbeing may bring about new bioethical dilemmas for health professionals who are not familiar with the tenets of the current main spiritualist followings in Brazil. Supporting the fact that this knowledge is an important tool for health professionals who seek to observe the principles of beneficence and patient's autonomy, this paper provides some basic orientations of the main Brazilian spiritualist tenets about the processes of death and dying...

Los avances tecnocientíficos de las últimas décadas contribuyeron para aumentar la cantidad de pacientes con enfermedades terminales en el mundo. Por consecuencia de la milenaria conexión entre la fase de terminación de la vida y los procesos espiritualistas, este hecho adquirió aspectos peculiares en Brasil, país en que el número de segmentos religiosos/espiritualistas se multiplicó los últimos años. El presente trabajo busca mostrar que la diversificación de las necesidades de pacientes brasileños en relación al bienestar espiritual en la fase final de la vida puede generar nuevos dilemas bioéticos al profesional de salud que ignore los fundamentos de las principales corrientes espiritualistas del país. Defendiendo que este conocimiento se constituya en herramienta útil para el profesional de sanidad que desee observar los principios de beneficencia y respeto a la autonomía del paciente, el texto dispone las orientaciones básicas de las principales líneas espiritualistas brasileñas sobre los procesos de muerte y de morir...

[Ethical issues of artificial nutritional support]. / Ethische Fragen der künstlichen Ernährung.

This review article discusses some ethical issues of clinical nutrition according to the Beauchamp and Childress principles of bioethics: "respect for autonomy, nonmaleficence, beneficence, and justice".

TRIAD III: nationwide assessment of living wills and do not resuscitate orders.

BACKGROUND: Concern exists that living wills are misinterpreted and may result in compromised patient safety. OBJECTIVE: To determine whether adding code status to a living will improves understanding and treatment decisions. METHODS: An Internet survey was conducted of General Surgery, and Family, Internal, and Emergency Medicine residencies between May and December 2009. The survey posed a fictitious living will with and without additional clarification in the form of code status. An emergent patient care scenario was then presented that included medical history and signs/symptoms. Respondents were asked to assign a code status and choose appropriate intervention. Questions were formatted as dichotomous responses. Correct response rate was based on legal statute. Significance of changes in response due to the addition of either clinical context (past medical history/signs/symptoms) or code status was assessed by contingency table analysis. RESULTS: Seven hundred sixty-eight faculty and residents at accredited training centers in 34 states responded. At baseline, 22% denoted "full code" as the code status for a typical living will, and 36% equated "full care" with a code status DNR. Adding clinical context improved correct responses by 21%. Specifying code status further improved correct interpretation by 28% to 34%. Treatment decisions were either improved 12-17% by adding code status ("Full Code," "Hospice Care") or worsened 22% ("DNR"). CONCLUSION: Misunderstanding of advance directives is a nationwide problem. Addition of code status may help to resolve the problem. Further research is required to ensure safety, understanding, and appropriate care to patients.

[Patients unable to give consent and without a power of attorney or legal guardian in the geriatric department]. / Der einwilligungsunfähige Patient ohne Bevollmächtigten oder Betreuer in der Akutgeriatrie.

BACKGROUND: The importance of powers of attorney and legal guardians for patients in hospitals who are unable to make decisions for themselves is growing. Without an authorized person in these cases, treatment and discharge are more difficult. The goal of this study was to describe the problem from the point of view of an acute geriatric department and discuss the problems with respect to duration and expense of hospitalization. In addition, an attempt was undertaken to improve cooperation with the legal authorities in order to reduce the time required to process the request for the appointment of a legal guardian. MATERIALS AND METHOD: A total of 24 consecutive patients appointed a legal guardian during their hospitalization were compared with 25 patients after the intervention. RESULTS: Of all patients treated in 2008, 2.1% needed an application for an appointed legal guardian (4.6% in 2009). These patients were more seriously ill and treated longer in the hospital compared to all patients. The intervention reduced the length of stay on average by 2.8 days. Independent risk factors for longer treatment were more seriously ill patients and later submission of the application after admittance to the hospital. For patients above the maximum length of stay, the move to a nursing home and the need of a professional legal guardian prolonged significantly the hospital treatment compared to those below the maximum length of stay. CONCLUSION: The data demonstrate that the German DRG system does not sufficiently consider the difficult management caused by patients without the ability to give consent to treatment and without a valid power of attorney. The time required until a professional legal guardian is appointed is too long for patients in a hospital. The necessity of a power of attorney has to be promoted more intensely to the public. Currently, the only two ways to minimize the problem is to identify the patients without, but needing a power of attorney as quickly as possible and to remain in close contact with the legal authorities.