BACKGROUND: End-of-life (EOL) care for Latinos with chronic illness is a critically important problem. Latinos with chronic illness suffer worse health outcomes and poorer quality of care due to various issues occurring in care delivery systems. Latinos are less likely than non-Hispanic whites to prepare an advance directive (AD) for health-care decision-making that impacts treatment decisions for when EOL is near. Advance care planning (ACP) interventions tailored specifically for Latinos have rarely been implemented.
OBJECTIVE: The primary aim examines whether a motivational interviewing (MI) intervention increased rates of AD documentation among older Latinos. The secondary aim was to examine whether MI improved communication with providers and family members.
METHODS: We pilot tested a randomized controlled trial with older Latinos >50 years with one or more chronic illnesses, including cancer. Participants were randomly assigned to usual care (UC) receiving ACP education alone versus treatment (TX), which received ACP education, plus MI counseling including interactive decisional support, emotional support, and barrier navigation.
RESULTS: Results of logistic regression indicate TX group participants were significantly more likely to document an AD than UC, however were less ready to talk with health-care providers or family members. Those reporting navigational barriers for talking about dying is difficult showed a significant negative relationship for AD completion even with significant intervention effects.
CONCLUSION: When using MI to motivate individuals toward ACP EOL conversations other factors are important to consider. Further research is needed, especially among Latinos to understand best practices for ACP education and counseling for EOL care.
This article will explore whether the law should allow people with anorexia nervosa to refuse nutrition and hydration with special reference to the English decision in Re E (Medical Treatment: Anorexia). It argues that the judge in that case made the correct decision in holding that the patient, who suffered from severe anorexia nervosa, lacked capacity to make valid advance directives under the Mental Capacity Act 2005 of the United Kingdom, and that medical procedures that are apparently against her wishes should be carried out for the sake of preserving her life. The law should generally not permit patients with anorexia nervosa to decline nutrition and hydration, precisely because their autonomous ability to make such decisions has been substantially circumscribed by this psychiatric condition.
The number of people living with Alzheimer disease and other dementias continues to grow because of the aging of the US population. Increasingly, the issue of patient- and/or surrogate-directed withholding of oral, hand-fed food and fluids in cases of late-stage dementia is confronting caregivers. Major media outlets have covered several cases wherein patients with explicit directives or clear surrogate decision making were not allowed to face the end of their lives according to their wishes. Ethical and legal scholars, as well as many end-of-life advocacy groups, are working to develop a framework and provide guidance in these cases. A local hospice organization was faced with these ethical deliberations when an activated proxy decision maker advocated for caregivers to stop hand feeding an incapacitated patient with end-stage dementia. In this article, this case is summarized, and this important ethical issue is presented in the setting of a literature review and nursing implications.
BACKGROUND: End-of-life care practices in long-term care facilities (LTCFs) are the focus of growing attention in Europe, due to rapidly increasing number of older persons living in LTCFs. The knowledge about end-of-life discussions or existence of written advance directives in the European LTCFs is scarce. This study's aim is to investigate the prevalence of written advance directives and their sociodemographic associates, among recently deceased LTCF residents, in six European countries.
METHODS: Data from the European Union-funded PACE database were collected from 322 LTCFs in six European countries in 2014. The assessments were performed by using two questionnaires designed for LTCF administrative staff and for staff member.LTCFs were selected within each country by using proportional stratified random sampling procedure. Facilities with certain types and sizes were included from each country.Multilevel multivariate analyses were performed to evaluate associations between written advance directives and selected predictors.
RESULTS: In total, 32.5 % of the 1384 deceased LTCF residents had a written advance directive with a range from 0% to 77 % between countries. The proportion of the most common advance directive, 'Do not resuscitate in case of cardiac or respiratory arrest (DNR)', varied correspondingly from 0% to 75%.LTCF type (OR 2.86 95% CI 1.59 to 5.23) and capability of expressing at the time of admission (OR 3.26 95% CI 2.26 to 4.71) were the independent predictors for advance directive. Residents living in LTCFs where physician was available were less likely to have advance directive compared with residents from LTCFs where physician was not available.
CONCLUSION: Extensive differences for prevalence of written advance directive exist between countries among older LTCF residents in Europe. Timely and appropriate response to LTCF resident's health needs and preferences efforts advance care planning.
BACKGROUND AND OBJECTIVES: The development of advance care plans (Plans) in general practice can be time consuming. End-of-life care should reflect an individual’s documented preferences. The aim of this study was to examine the content and implementation of Plans in hospital during end-of-life care.
METHODS: A retrospective cohort study of the hospital medical records of decedents aged =75 years was performed to assess Plan content and implementation.
RESULTS: Of the 536 decedents, 52 had a Plan. There were 17 cases where life-prolonging treatment was given and contradicted preferences listed in the Plan. This included instances of intubation, surgery and curative medication.
DISCUSSION: General practice staff investment in advance care planning should be reflected in the utilisation of Plans and, where medically indicated, respect for patients’ preferences.
With the ratification of the landmark United Nations Convention on Rights of Persons with Disabilities by India, it was imperative to revamp the mental health-care legislation, among other changes. Most notably, a presumption of mental capacity has been introduced, which means a paradigm shift in the client and provider relationship. The Mental Healthcare Act, 2017 empowers all persons to make advance directives (AD) and nominate representatives for shared decision-making. Psychiatric ADs (PADs) also seem to improve the information exchange between the care provider and the service user. PADs may also be used as a vehicle of consent to future treatments. While drafting the PAD, the drafter must also plan how such directed care would be financed. Insurance companies have not been mandated to comply with ADs. In the eventuality that the drafter's family refuse support for treatment specified in the PAD, the drafter would be left holding an unimplementable PAD. The AD saw its origins in the care of the terminally ill and decades later came to be utilized in mental health care. After nearly three decades of use in developed countries, evidence at best remains mixed or inconclusive. This review focuses on the AD from the Indian perspective.
Background: Advance directives (ADs) are seldom discussed between primary care physicians (PCPs) and their patients, especially those with noncancer diseases. The aim was to identify the factors associated with discussing AD by noncancer patients with their physicians.
Methods: This cross-sectional study was conducted in a hospital or clinic from October to December 2017. Physicians chose eligible noncancer patients aged 20 years or older to respond to an anonymous self-completed questionnaire inquiring about the objective variable "I want to discuss AD with my doctor," as well as basic characteristics, and facilitators and barriers to discussing AD identified in previous studies. The physicians responded to a survey comprising the Palliative Performance Scale (PPS) and inquiring about the disease category for each patient. Data were analyzed using binomial logistic regression analysis.
Results: A total of 270 patients (valid response rate, 79.6%) were included. Multivariate analysis identified a period of visit to the study site = 3 years (odds ratio [OR], 2.07; 95% confidence interval [CI], 1.05-4.10), physicians who are very good at taking care of patients’ disease (OR, 12.68; 95% CI, 1.12-143.22), and patients’ worry about their quality of life (QOL) in the future (OR, 2.69; 95% CI, 1.30-5.57) as facilitators for discussing AD with physicians, and PPS = 90 (OR, 0.51; 95% CI, 0.26-0.98) as a barrier.
Conclusions: Our study indicates that patients' future QOL concerns, a long period of visit to a hospital, and the presence of physical symptoms were associated with the willingness of noncancer patients to discuss AD with PCPs.
il y a une gigantesque évolution de la relation patient-soignant depuis une trentaine d'années en France. L'auteur s'appuie sur son cham de compétences, à savoir la philosophie du droit pour en parler. Il développe son propos en trois points : évolution du droit français en lien avec l'évolution de la place du patient, articulation entre responsabilité juridique des soignants et droits des malades et pour terminer statut des directives anticipées pour comprendre la nature de la volonté du patient.
Depuis le début des années 2000, l’une des priorités du législateur réside dans le respect de la volonté du patient, cela même si ce dernier n’est plus en mesure de l’exprimer. Or, comment tenir compte de la volonté d’une personne qui n’est plus en capacité de la faire connaître ? Les mesures anticipatives ont pour raison d’être d’apporter une réponse à cette question. Ainsi, diverses institutions coexistent dans notre paysage juridique, afin de permettre aux personnes d’organiser leur vie future pour le cas où elles viendraient à ne plus pouvoir gouverner par elles-mêmes leur existence et pourvoir seules à leurs intérêts : le mandat de protection future, la désignation d’une personne de confiance et les directives anticipées.
Cet article montre que le processus d’individualisation de la fin de vie ne peut être dissocié de l’émergence récente de nouvelles formes de socialisation à la mort et au mourir. Si l’individu contemporain s’est affranchi des liens traditionnels, il doit davantage se plier aux contraintes de nouvelles instances ou institutions (hôpital, profession médicale, associations, entreprises de pompes funèbres...) qui jouent désormais un rôle essentiel. Il peut redéfinir, aménager, personnaliser dans une certaine mesure, les modalités de sa prise en charge mais ces instances occupent aujourd’hui une place centrale, comme en témoignent le développement des soins palliatifs, les dispositifs de soutien aux endeuillés, la préparation de ses propres obsèques, ou encore les démarches d’adhésion à l’euthanasie. On propose, dans ce qui suit, de s’interroger sur la diversité des formes de socialisation qui conditionnent ou orientent l’expérience individuelle et sociale du mourir.
Pour les patients admis en unité de soins palliatifs (USP), les directives anticipées (DA) pourraient être un outil permettant de connaître leurs volontés et de s'inscrire dans le respect de leur autonomie. Cependant, les DA sont rarement rédigées ou peu contributives. Cette étude a pour objectif d'évaluer la faisabilité de la co-construction des DA en USP. La méthode utilisée est qualitative, celle d'une recherche-action. Elle a été réalisée sur deux mois dans l'USP du CHU de Bordeaux. Il a été proposé à des patients éligibles de co-construire leurs DA avec l'aide d'un médecin au cours d'un entretien semi-directif à propos des soins et de l'accompagnement de leur fin de vie. Une analyse de contenu des entretiens a été réalisée, suivie d'une évaluation du processus par un questionnaire de satisfaction. Sur les 28 patients hospitalisés dans l'USP sur cette période, douze étaient éligibles pour participer à l'étude. Sept patients ont accepté, mais l'état de santé de cinq d'entre eux s'est rapidement aggravé et seulement deux entretiens ont finalement pu être réalisés. Les difficultés mises en évidence pour la réalisation des DA sont le choix du moment adéquat pour initier la démarche et la nécessité d'adaptation au patient et à la situation. Néanmoins, cette co-construction a semblé permettre une meilleure contextualisation des DA dans le sens d'une démarche globale. La rédaction des DA a été difficilement réalisable du fait de la phase avancée de la maladie chez les personnes concernées. Il semblerait nécessaire d'anticiper l'information sur les DA plus précocement, comme par exemple durant la phase des traitements spécifiques. De plus, une co-construction des DA pourrait améliorer leur pertinence et leur utilité.
Sous-couvert de principe d'autonomie, où nous nous devons d'informer le malade, de suivre ses directives, ne sommes-nous pas en train d'induire une angoisse supplémentaire au patient en fin de vie ? Qu'en est-il de nos possibilités d'accompagner ? Quelle place pour les professionnels de santé; en soins palliatifs, dans ce contexte ? L'influence du corps médical à rédiger les directives anticipées peut avoir l'effet inverse d'empêcher le singulier et d'être dans des conduites prédéterminées. Il semble important de se questionner sur nos intentions quand nous demandons à un patient en fin de vie de rédiger ses directives anticipées.
La sclérose latérale amyotrophique (SLA) est une maladie neurodégénérative incurable. Elle est responsable d'une dépendance croissante au cours de son évolution et nécessite le recours à des techniques de suppléance vitales. Elle peut constituer un modèle relevant d'une prise en charge palliative. Celle-ci est pourtant tardive. Il existe de véritables enjeux légaux et éthiques à aborder précocement ce type de soins. L'élaboration de directives anticipées permet de respecter l'autonomie du patient. La maladie grave rend pourtant leur élaboration difficile. L'information du patient sur les possibilités thérapeutiques curatives mais aussi palliatives peut faciliter l'expression de ses souhaits. L'approche palliative précoce dans la SLA facilite le dialogue autour de la fin de vie et pourrait faciliter les choix du patient mais aussi du médecin.
BACKGROUND: With India enacting the Mental Health Care Act (MHCA; No. 10 of 2017a), Psychiatric Advance Directives (PADs) have been legalised and have become binding orders for psychiatrists treating patients. There is a paucity of research into acceptability of PADs in Indian mental health care, likely due to a lack of awareness. There are no educational measures about PADs provided for in this Act. Facilitators and facilitation methods have not been elaborated upon as well.
AIM: The aim of this study is (a) to develop/evaluate the effectiveness of a structured Education-cum-Assessment Tool (EAT) in providing information regarding PADs and (b) to evaluate modes of facilitation required by patients to complete PADs.
METHODS: A tool was developed as per provisions regarding PADs in the Mental Health Care Bill of 2013. This tool was administered to patients (n = 100), purposively sampled from the adult psychiatry review out-patient department (OPD). Patients were evaluated on retention of information, completion of PADs, modes of facilitation and time taken to write one.
RESULTS: Mean years of education was 8.28 (±5.74) years and mean duration of illness was 8.30 (±7.04) years. In all, 65% had Below-Poverty Line (BPL) status. All participants completed valid PADs in an average of 15 minutes. About 93% required facilitation via assistance in writing and reminding. The mean EAT scores implied above 70% retention but did not relate to types of facilitation.
CONCLUSIONS: EAT scores can be used as an approximate measure of the patient's ability to understand and retain information which is a part of decisional capacity. Types of facilitation can help in understanding patient's ability to communicate their choices. Service providers may find EAT a time-effective tool for uniformly educating service users regarding PADs and indirectly assessing competence.
This study was conducted to enhance the rate of advance care planning (ACP) conversations and documentation in a dementia specialty practice by increasing physician knowledge, attitudes, and skills. We used a pre- and postintervention paired design for physicians and 2 independent groups for patients. The ACP dementia educational program encompassed 3 objectives: (1) to understand the relevance of ACP to the dementia specialty practice, (2) to provide a framework to discuss ACP with patients and caregivers, and (3) to discuss ways to improve ACP documentation and billing in the electronic medical record. A 10-item survey was utilized pre- and posteducational intervention to assess knowledge, attitudes, and skill. The prevalence of ACP documentation was assessed through chart review 3 months pre- and postintervention. The educational intervention was associated with increased confidence in ability to discuss ACP ( P = .033), belief that ACP improves outcomes in dementia ( P = .035), knowledge about ACP Medicare billing codes and requirements ( P = .002), and belief that they have support from other personnel to implement ACP ( P = .017). In 2 independent groups of patients with dementia, documentation rates of an advance directive increased from 13.6% to 19.7% ( P = .045) and the Medical Order for Life-Sustaining Treatment (MOLST) increased from 11.0% to 19.0% ( P = .006). The MOLST documentation in 2 independent groups of patients with nondementia increased from 7.3% to 10.7% ( P = .046). Continuing efforts to initiate educational interventions are warranted to increase the effectiveness ACP documentation and future care of persons with dementia.
This paper argues that existing English and Welsh mental health legislation (The Mental Health Act 1983 (MHA)) should be changed to make provision for advance decision-making (ADM) within statute and makes detailed recommendations as to what should constitute this statutory provision. The recommendations seek to enable a culture change in relation to written statements made with capacity such that they are developed within mental health services and involve joint working on mental health requests as well as potential refusals. In formulating our recommendations, we consider the historical background of ADM, similarities and differences between physical and mental health, a taxonomy of ADM, the evidence base for mental health ADM, the ethics of ADM, the necessity for statutory ADM and the possibility of capacity based ‘fusion’ law on ADM. It is argued that the introduction of mental health ADM into the MHA will provide clarity within what has become a confusing area and will enable and promote the development and realisation of ADM as a form of self-determination. The paper originated as a report commissioned by, and submitted to, the UK Government's 2018 Independent Review of the Mental Health Act 1983.
AIMS: To develop a culturally relevant conceptual map to discover perceptions of a statutory form of advance directive for Hong Kong Chinese.
DESIGN: This was the first study on advance directive using a concept mapping approach with two phases.
METHODS: The data collection of the two phases were conducted from February 2016 - February 2017. In Phase I, 96 participants were recruited using purposive sampling. In Phase II, multi-dimensional scaling and hierarchical cluster analysis were used to create a concept map based on quantitative data.
RESULTS: The map depicted six clusters of factors affecting the acceptance of advance directive, with their importance rating in decreasing order: Conditional factor, value system, process of AD, physical and illness factor, personal situation factor and socio-cultural factor.
CONCLUSION: The study adopted a comprehensive approach to unfolding the multi-faceted factors affecting the acceptance of advance directives by stakeholders. Strategies targeting the clusters could be developed to facilitate the discussion and completion of advance directive.