Advance directives and end-of-life care: knowledge and preferences of patients with brain Tumours from Anhui, China.

BACKGROUND: In Mainland China, advance directives (ADs) and end-of-life care for patients with tumours, especially patients with brain tumours who may have lost consciousness or the ability to speak at the early stage of their illness, have been poorly acknowledged. Thus, this study aimed to clarify the knowledge and preferences of ADs and end-of-life care in patients with brain tumours and to investigate predictors of patient preferences. METHODS: This was a population-based cross-sectional survey that was conducted via face-to-face interviews. Information on sociodemographic factors, brain tumour illness, knowledge and preferences of the advanced decisions and end-of-life care of the patients was collected. RESULTS: A total of 88.61% of participants had never heard of ADs, but 65.18% reported that they would like to make ADs. Knowledge of ADs, receiving surgical treatment or radiotherapy, being younger than 70 years old, being male, having educational qualifications of college or beyond, being childless, having medical insurance for nonworking or working urban residents and self-paying medical expenses were predictors of preference for making ADs. A total of 79.43% of participants wanted to discuss end-of-life arrangements with medical staff, and 63.29% of participants were willing to receive end-of-life care, even though it would not delay death. A total of 65.82% of patients with brain tumours wanted resuscitation, and as many as 45.45% of the patients thought that they did not need life support if they were in a persistent vegetative state. Brain primary tumours, being younger than 70 years old, male sex, educational qualification of junior middle school or below, having children, having new rural cooperative medical insurance and having medical expenses paid by children or spouses were predictors of choosing appropriate palliative care. CONCLUSIONS: ADs and end-of-life care have been poorly acknowledged among patients with brain tumours in mainland China. Additional efforts should be encouraged amongst patients with primary brain tumours, those who are undergoing surgery and radiotherapy and those who have low socioeconomic status. A longitudinal and comprehensive study is encouraged to promote disease-specific ADs among Chinese patients with brain tumours.

Advance care planning: the future.

OBJECTIVES: There is increased global focus on advance care planning (ACP) with attention from policymakers, more education programmes, laws and public awareness campaigns. METHODS: We provide a summary of the evidence about what ACP is, and how it should be conducted. We also address its barriers and facilitators and discuss current and future models of ACP, including a wider look at how to best integrate those who have diminished decisional capacity. RESULTS: Different models are analysed, including new work in Wales (future care planning which includes best interest decision-making for those without decisional capacity), Asia and in people with dementia. CONCLUSIONS: ACP practices are evolving. While ACP is a joint responsibility of patients, relatives and healthcare professionals, more clarity on how to apply best ACP practices to include people with diminished capacity will further improve patient-centred care.

Stakeholder perspective on barrier to the implementation of Advance Care Planning in a traditionally paternalistic healthcare system.

BACKGROUND: Advance psychiatric agreements could guide medical teams in providing care consistent with the incapacitated service user's wishes. However, these types of agreements are rarely completed in Asian settings. What challenges can a traditionally paternalistic healthcare system expect to encounter when attempting to implement psychiatric advance directives? METHODS: We answered this research question by exploring the cultural, administrative and logistical challenges that might impede the implementation of the system supporting the service. We interviewed key stakeholders, 28 service users and 22 service providers, to seek their views and interests in the implementation of directives. We structured our analyses along a literature-review-based framework designed to guide further implementation studies, proposed by Nicaise and colleagues (2013). Accordingly, we divided our inductively generated themes into four longitudinal categories: pre-development stage, development stage, implementation stage, post-implementation stage. RESULTS: Overall, the findings indicated that many service users and service providers are interested in advance care planning. They believed that foreseeable challenges could be overcome with appropriate measures. However, the multiple challenges of implementation led some service providers to be ambivalent about their implementation and led service users to dismiss them. Specifically, factors related to the local culture in Singapore necessitated adjustments to the content and structure of the directives. These include language barriers in a multicultural society, conflicting wishes in a collectivist society, taboos for speaking about undesirable outcomes in a traditionalist society, and time limitations in a fast-paced society. CONCLUSION: While culture-specific changes may be required to enable service users in a small Asian country to employ existing advance psychiatric agreement approaches, service providers and service users see their benefits. However, service providers must be mindful not to assume that service users are willing to defer every decision to their physician.

Advance Research Directives: Legal and Ethical Issues and Insights from a National Survey of Dementia Researchers in Australia.

Advance research directives (ARDs) are a means by which people can document their wishes about research participation in the event of future incapacity. ARDs have been endorsed in some ethics guidelines and position statements, however, formal legal recognition is limited. A few empirical studies have investigated the views of researchers and other stakeholders on ARDs and tested strategies to implement such directives. To further knowledge in this area, we undertook a survey of dementia researchers in Australia (n= 63) to examine their views on ARDs. Most of the survey respondents (>80%) thought ARDs would promote autonomy in decision-making and enable opportunities for people with cognitive impairment to be included in research. Respondents indicated concern about directives not being available when needed (71%) and that ethics committees would not accept ARDs (60%). Few respondents had used ARDs, but a majority (from 57-80%) would be willing to offer ARDs for a range of research activities, such as observing behaviour and taking measures, blood samples or scans. Nearly all respondents (92%) agreed that current dissent should override prior wishes stated in an ARD. The survey findings are contextualised with attention to ethics guidelines, laws and practices to support advance research planning.

Associations of Advance Directive Knowledge, Attitudes, and Barriers/Benefits With Preferences for Advance Treatment Directives Among Patients With Heart Failure and Their Caregivers.

BACKGROUND: Patients with heart failure (HF) have not been considered as major beneficiaries of advance directives (ADs). We analyzed factors affecting the preferences for the adoption of ADs by patients with HF and their caregivers. METHODS AND RESULTS: Seventy-one patient (mean age: 68 years)-caregiver (mean age: 55 years) dyads were enrolled during clinic visits for routine care at a single institution and completed questionnaires during in-person visits. Cohen's kappa coefficients and generalized estimating equation models were used to analyze the data. The agreement on dyadic perspectives for aggressive treatments was poor or fair, whereas agreement relative to hospice care was moderate (k = 0.42, 95% confidence interval = 0.087-0.754). Both patients and caregivers demonstrated poor knowledge of ADs and similar levels of perceived benefits and barriers to advance care planning. However, the caregivers had more positive attitudes toward ADs than patients. Patients and caregivers who were older and/or males had greater odds of preferring aggressive treatments and/or hospice care. Further, those with depressive symptoms had lower odds of preferring hospice care. CONCLUSION: The dyadic agreement was moderately high only for hospice care preferences. Both patients and caregivers demonstrated knowledge of shortfalls regarding ADs. Timely AD discussions could increase dyadic agreement and enhance informed and shared decision-making regarding medical care.

Advance directives of lung cancer patients and caregivers in China: A cross sectional survey.

BACKGROUND: This study aimed to investigate lung cancer patients and attitudes of their caregivers toward advance directives (ADs) in China. METHODS: A cross sectional study was conducted in the Department of Oncology outpatient clinic in West China Hospital, Sichuan University. A questionnaire was used to survey the attitudes of lung cancer patients and caregivers toward ADs. RESULTS: A total of 148 lung cancer patients and 149 caregivers were enrolled into the study. Of these, 94.6% and 89.9% of patients and caregivers had not heard of AD and none of those in the study had ever signed an AD. A total of 79.7% patients and 75.2% caregivers were willing to sign ADs after they were provided with information. Patients who preferred the end of life period to sign ADs were 5.4 times more likely to have ADs than patients who chose to sign ADs when their disease was diagnosed (P < 0.05, 95%CI [1.27-22.93]). Caregivers who were reluctant to undergo chemotherapy when diagnosed with cancer were 2.16 times more likely to sign ADs than those willing to receive chemotherapy (P < 0.05, 95%CI [1.20-3.90]). CONCLUSIONS: In China, lung cancer patients and their caregivers showed lack of knowledge about ADs, and the completion rate of ADs was extremely low. However, participants were positive about ADs and public education on ADs may help to increase the completion rate of ADs in China.

Healthcare professionals' perceptions about the Italian law on advance directives.

BACKGROUND: In the variegated legislative framework on advance directives, the first specific regulation in Italy on this issue came into force only in 2018. RESEARCH OBJECTIVE: This qualitative study aimed to investigate the implications of the new Italian law on advance directives in clinical practice from the perspective of those who deal with this delicate ethical issue on an everyday basis, that is, Italian healthcare professionals. RESEARCH DESIGN: A qualitative research design using semi-structured audio-recorded interviews was adopted. The data collection and analysis were performed according to the Grounded Theory approach. PARTICIPANTS: Nineteen healthcare professionals (16 nurses, 3 physicians) working in a palliative care unit of a research and clinical institute in Italy. ETHICAL CONSIDERATIONS: The study is part of the WeDistress HELL Project (WEllness and DISTRESS in HEalth care professionals dealing with end of Life and bioethicaL issues) approved by the Ethical Committee of ICS Maugeri - Institute of Pavia (Italy). FINDINGS: The authors identified a main overall category, 'Pros and Cons of the Italian law on advance directives', composed of six constituent categories: Positive welcome, Self-determination and protection, Prompts for future betterment, Uncertainties, Lack of knowledge, and Neutrality and no suggestions. DISCUSSION: The Italian law n. 219/2017 on advance directives was seen as a legal instrument possessing both strengths and weaknesses, but able to guarantee the patient's self-determination and support healthcare professionals in providing care according to patients' wishes. CONCLUSION: An understanding of the healthcare providers' perspective may support the discussion on advance directives and bridge the gaps that currently persist in handling ethical issues.

Are older and seriously ill inpatients planning ahead for future medical care?

BACKGROUND: Despite the perceived ethical, personal and health service benefits of advance care planning (ACP), the extent to which older and seriously ill Australian inpatients have considered future health decisions remains uncertain. This study aimed to determine in a sample of older and seriously ill inpatients, the proportion who had: 1) engaged in four advance care planning (ACP) activities; 2) not engaged in ACP activities but wanted to; and 3) reasons why they had not engaged. METHODS: Cross-sectional face-to-face standardised interview survey with inpatients in a tertiary referral centre who were either: aged 80+ years; aged 55+ years with progressive chronic disease(s); or judged by treating clinicians as having a life expectancy of less than 12 months. Patients indicated whether they had engaged in four ACP activities: (1) appointed medical substitute-decision-maker(s), (2) recorded end-of-life wishes in an advance directive or care plan; and talked about their end-of-life wishes with their: (3) support persons and/or (4) doctors. Patients who had not engaged in activities were asked whether they wished this to occur and reasons why. RESULTS: One hundred eighty-six inpatients consented to the study (80% of approached). Of these, 9% (n = 16) had engaged in four ACP activities; 27% (n = 50) had not engaged in any. Half (n = 94, 52%) had appointed a medical substitute-decision-maker, 27% (n = 50) had recorded wishes in an advance directive or care plan, 51% (n = 90) had talked about their end-of-life wishes with support persons and 27% (n = 48) had talked with their doctor. Patients who wanted to, but had not, engaged in the four ACP activities were unaware they could record wishes or appoint decision-makers, or indicated providers had not initiated conversations. CONCLUSION: Relatively few inpatients had engaged in all four ACP activities. More inpatients had discussed end of life issues with family and appointed substitute decision makers, than completed written documents or talked with doctors. Community education and a more active role for community and hospital-based providers in supporting patients and families to collaboratively resolve end-of-life decisions may increase the probability wishes are known and followed.

Psychiatric Advance Directives: Origins, Benefits, Challenges, and Future Directions.

Psychiatric advance directives (PADs) are legal documents that allow individuals with psychiatric illness to designate decisions, while competent, about their future psychiatric care were they to lose competency due to psychiatric illness in the future. Among other items, these documents often include preferences regarding a surrogate decision-maker, types of medications, doses and routes of medications, seclusion and restraints, electroconvulsive therapy, and instructions for care of their property while incapacitated. While the concept and legal recognition of PADs has existed in the United States for several decades, use of PADs by patients and familiarity with PADs among mental health providers remain limited. This column reviews the origin of PADs, discusses several commonly considered arguments for and against the use of these documents, and concludes with a discussion of how PADs are currently used in the United States and their potential future role in mental health treatment.

Culturally Acceptable Advance Care Planning and Advance Directives for Persons Experiencing Homelessness.

Although the process of dying is a universal human experience, it often magnifies individuals' unique cultural differences. Persons experiencing homelessness (PEHs) have unique barriers, challenges, and wishes for end-of-life care. There is insufficient evidence about how to provide culturally congruent advance care planning (ACP) through advance directive (AD) completion for PEHs. This study addressed this knowledge gap, and its findings serve as the basis for developing additional strategies to promote a satisfying ACP experience for this population when they complete an AD. The purpose of this study was to discover if an AD form recreated for PEHs would positively affect their completion of the AD as well as their overall experience with ACP. Guided by the culture care theory and qualitative ethnonursing methodology, 38 individuals (30 PEHs and 8 student nurses) were interviewed. Data were analyzed using the 4 phases of ethnonursing analysis. The 3 themes abstracted were (1) "it needs to be done," (2) the presence or absence of trusted family support, and (3) ACP for PEHs is facilitated by an AD workshop. Nursing interventions based on study findings can be used to help promote a dignified, meaningful ACP experience for vulnerable populations.

Approaches and reflexions on advance healthcare directives in Brazil.

OBJECTIVE: to explain the approaches and discussions about the Advance Healthcare Directives spread among health professionals, lawyers and society. METHOD: bibliographic search in the databases SciELO, LILACS, BDENF, in Portuguese, carried out from December 2017 to January 2018. RESULTS: 22 articles were considered for analysis with interviews and testimonies of physicians, intensivists and geriatricians, nurses, technicians and Nursing auxiliaries, Medical students, lawyers and Law students. CONCLUSION: there is a small number of papers on the Advance Healthcare Directives in Brazil, and a wide range of approaches that have not yet been clarified. The theme is not widely spread and little clarified in its essence.

Approaches and reflexions on advance healthcare directives in Brazil / Enfoques y reflexiones sobre las directivas anticipadas en Brasil / Abordagens e reflexões sobre diretivas antecipadas da vontade no Brasil

ABSTRACT Objective: to explain the approaches and discussions about the Advance Healthcare Directives spread among health professionals, lawyers and society. Method: bibliographic search in the databases SciELO, LILACS, BDENF, in Portuguese, carried out from December 2017 to January 2018. Results: 22 articles were considered for analysis with interviews and testimonies of physicians, intensivists and geriatricians, nurses, technicians and Nursing auxiliaries, Medical students, lawyers and Law students. Conclusion: there is a small number of papers on the Advance Healthcare Directives in Brazil, and a wide range of approaches that have not yet been clarified. The theme is not widely spread and little clarified in its essence.

RESUMEN Objetivo: explicitar los enfoques y discusiones sobre las Directivas Anticipadas difundidas entre los profesionales de la salud, los abogados y la sociedad. Método: investigación bibliográfica realizada en las bases de datos SciELO, LILACS, BDENF, en portugués, del diciembre 2017 hasta enero 2018. Resultados: se consideraron 22 artículos para el análisis con entrevistas y testimonios médicos, intensivistas y geriatras, enfermeros, técnicos y auxiliares de Enfermería, estudiantes de Medicina, de Derecho y abogados. Conclusión: hay un pequeño número de trabajos sobre las Directivas Anticipadas en Brasil, y una amplia gama de enfoques poco elucidados. El tema sigue siendo poco difundido y poco esclarecido en su esencia.

RESUMO Objetivo: explicitar as abordagens e discussões sobre as Diretivas Antecipadas da Vontade difundidas entre os profissionais de saúde, advogados e a sociedade. Método: pesquisa bibliográfica nas bases de dados SciELO, LILACS, BDENF, em Língua Portuguesa, realizada no período de dezembro de 2017 a janeiro de 2018. Resultados: foram considerados 22 artigos para análise com entrevistas e depoimentos de médicos, intensivistas e geriatras, enfermeiros, técnicos e auxiliares de Enfermagem, estudantes de Medicina, de Direito e advogados. Conclusão: há um pequeno número de trabalhos sobre as Diretivas Antecipadas da Vontade no Brasil, e uma ampla gama de abordagens ainda pouco elucidadas. O tema ainda é pouco difundido e pouco esclarecido em sua essência.

Forecasting and foreclosing futures: The temporal dissonance of advance care directives.

Advance care directives situate persons as rational and self-determining actors who can make anticipatory plans about their futures. This paper critically examines how people interpret individual and future-oriented approaches to medical decision-making with limited access to information and knowledge, and reduced opportunities to prepare and document their care preferences. Based on ethnographic research with Asian migrant families living in Adelaide, South Australia (August 2015-July 2018), it reveals a discord between planning for a finite future and the contingencies and continuities of social life. It unsettles the detached reasoning that is privileged in end-of-life decision-making and reveals limitations to "do-it-yourself" approaches to advance care directives which, it will be argued, not only forecasts potential futures but also forecloses them. Taking Derrida's critique of death and decision-making as a point of departure, it develops the concept of temporal dissonance as a theoretical framework to articulate the tensions that are constituted in advance care directives. The paper suggests that attention to temporal incongruities may help to shed light on the many complex interpretations of advance care directives and the difficulties of promoting them in diverse contexts.

[Dementia from a palliative care perspective: why a disease-specific advance care planning is necessary]. / Demenz aus palliativmedizinischer Perspektive: warum ein krankheitsspezifisches Advance Care Planning wichtig ist.

Dementia from a palliative care perspective: why a disease-specific advance care planning is necessary Abstract. Palliative Care has to transform profoundly in the context of population aging in many countries around the globe. It has to collaborate increasingly with geriatric medicine and incorporate geriatric expertise. One of the pivotal challenges of geriatric palliative care is ethically appropriate decision making for patients who have lost decision-making capacity. While the traditional approach to advance directives (living wills) has demonstrably proven ineffective, the new approach that is currently being embraced, including in German-speaking countries, is the systemic process of advance care planning (ACP). In this article, ACP is first presented with its general aims, elements and effects. Second, it is shown why we need an adapted ACP program for people with dementia and what such a dementia-specific ACP must entail.

Whose job? The staffing of advance care planning support in twelve international healthcare organizations: a qualitative interview study.

BACKGROUND: ACP involving a facilitated conversation with a health or care professional is more effective than document completion alone. In policy, there is an expectation that health and care professionals will provide ACP support, commonly within their existing roles. However, the potential contributions of different professionals are outlined only broadly in policy and guidance. Research on opportunities and barriers for involving different professionals in providing ACP support, and feasible models for doing so, is currently lacking. METHODS: We identified twelve healthcare organizations aiming to offer system-wide ACP support in the United States, Canada, Australia and New Zealand. In each, we conducted an average 13 in-depth interviews with senior managers, ACP leads, dedicated ACP facilitators, physicians, nurses, social workers and other clinical and non-clinical staff. Interviews were analyzed thematically using NVivo software. RESULTS: Organizations emphasized leadership for ACP support, including strategic support from senior managers and intensive day-to-day support from ACP leads, to support staff to deliver ACP support within their existing roles. Over-reliance on dedicated facilitators was not considered sustainable or scalable. We found many professionals, from all backgrounds, providing ACP support. However, there remained barriers, particularly for facilitating ACP conversations. A significant barrier for all professionals was lack of time. Physicians sometimes had poor communication skills, misunderstood medico-legal aspects and tended to have conversations of limited scope late in the disease trajectory. However, they could also have concerns about the appropriateness of ACP conversations conducted by others. Social workers had good facilitation skills and understood legal aspects but needed more clinical support than nurses. While ACP support provided alongside and as part of other care was common, ACP conversations in this context could easily get squeezed out or become fragmented. Referrals to other professionals could be insecure. Team-based models involving a physician and a nurse or social worker were considered cost-effective and supportive of good quality care but could require some additional resource. CONCLUSIONS: Effective staffing of ACP support is likely to require intensive local leadership, attention to physician concerns while avoiding an entirely physician-led approach, some additional resource and team-based frameworks, including in evolving models of care for chronic illness and end of life.

Nonstandard Advance Directives in Emergency Medicine: What Should We Do?

BACKGROUND: Critically ill or injured emergency department or prehospital patients who lack decision-making capacity sometimes present with a non-standard advance directive, such as a "Do Not Resuscitate" tattoo or medallion. Emergency clinicians must immediately address the question of whether to withhold treatment based on what may or may not be a valid patient directive. DISCUSSION: Advance directives have been standardized for a good reason. Emergency department or prehospital healthcare providers must be able to immediately interpret and act on them without needing a legal interpretation. When faced with non-standard directives, physicians can follow them, ignore them, or simply use them as an additional piece of information about the individual's wishes for some situations at one point in his or her life. Absent the patient's input or that of aknowledgeable surrogate, both the patient's initial reasons for their non-standard directive and his or her present wishes concerning resuscitation cannot be independently known. Therefore, healthcare providers must initiate treatment while they buy time, attempt to return the patient to lucidity, and search for probative information regarding their current wishes concerning medical treatment. Without such additional information, the moral weight will always favor initiating treatment, since withholding treatment is often irreversible and any treatment instituted can later be withdrawn.

Directing citizens to create advance directives.

This article describes the Swiss law on advance directives that was passed at the beginning of 2013 and led to more certainty about the legally binding character of such directives. However, for various reasons the drafting of advance directives is not yet widespread in Switzerland, and many resources might be put to better use if this became a common practice. A recent proposal by members of a political party to make the discussion, although not the actual drafting, of advance directives mandatory was rejected by the Swiss Federal Parliament, and the proposal was written off after having been pending for 2 years. We consider that the rejection of this proposal was not justified and that discussion of advance directives should become mandatory, so that individuals can fully assume their role as responsible citizens taking proactive decisions. The decision not to draft advance directives should be a deliberate one, marking a shift from the current "opt-in" approach to an "opt-out" scenario.

A review of paper-based advance care planning aids.

BACKGROUND: Advance care planning (ACP) aids can help prepare patients, family members, and physicians for in-the-moment medical decision-making. We wished to describe the content and approach of paper-based ACP aids in order to characterize existing aids and inform the development of a new ACP aid. METHODS: Paper-based ACP aids were identified through an environmental scan and screened for eligibility. ACP conceptual frameworks and data were gathered via stakeholder engagement and used to inform the coding framework that two investigators used to independently code each aid. A directed content analysis was conducted on these eligible aids. Aids were categorized through a deliberative process with an investigator abstracting general information for each aid. RESULTS: Fifteen aids met the eligibility criteria. They ranged in length from 6 to 78 pages with the average aid written at an eighth-grade reading level. The content analysis revealed that many aids encouraged choosing a surrogate decision maker and informed users about legal medical documents. Fewer than half of the aids facilitated patient clarification of values regarding quality of life issues. The authors identified and termed the following three categories of aids: informative; semi-action oriented; and action-oriented. It was often unclear whether patients contributed to the development or testing of the ACP aids reviewed. CONCLUSIONS: Most existing paper-based ACP aids address legal matters such as completing an advance directive. Only a minority elicited patient values and it was unclear whether any were developed in partnership with patients. Future development of ACP aids should account for patient preferences with a goal of supporting in-the-moment medical decision-making.

Advance directives from haematology departments: the patient's freedom of choice and communication with families. A qualitative analysis of 35 written documents.

BACKGROUND: In France, advance directives are favourably perceived by most of the population, although the drafting rate is low. This ambivalence is challenging because advance directives are meant to promote the autonomy and freedom of choice of patients. The purpose of this study was to analyse the content of advance directives written by patients suffering from malignant haemopathies to better understand how patients put them into practice. These could be relevant as early as the initial diagnosis of haematological malignancies because of the uncertain course of the disease. METHODS: This was a multicentre, qualitative, descriptive study. The advance directives written by patients with malignant haemopathies treated in one of the six French hospital departments were included in the study from 01/06/2008 to 15/04/2016. A thematic analysis of the advance directives was performed by two researchers: a senior haematologist and a research assistant. RESULTS: The median age of the patients was 69. Most were women (sex ratio: 0.59), living as a couple (57%), with lymphoid pathologies (66%), who were still alive two years after the instructions were written (63%) and had nominated a health care proxy (88.6%). Free texts (62.9%) were richer in content than pre-defined forms. The advance directives were used in three ways: for a purely legal purpose, to focus on medical treatments or actions, or to communicate a message to the family. Three main themes emerged: (1) refusal of medical treatment (100%), in which patients express refusal of life-sustaining care (97.1%). The actual treatments or the moment when they should be limited or stopped were not always mentioned in detail. (2) A desire for effective pain relief to avoid suffering (57.1%) and (3) messages for their family (34.3%), such as funeral arrangements (17.1%) and messages of love or trust (14.3%). CONCLUSIONS: Patients who write advance directives are not necessarily at the end of their lives. Their content mainly conveys treatment wishes, although patients also use them to pass on personal messages to their close family. This emerging role of advance directives to communicate messages within the family should be valued, even if it is not their original purpose.