BACKGROUND: The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm is an effective advance care planning tool. However, barriers to implementation persist. In the United States, POLST program development occurs at the state-level. Substantial differences between states has left POLST implementation largely unstandardized. No peer-reviewed studies to date have evaluated state-based POLST program development over time.
OBJECTIVE: To assess and learn from the successes and barriers in state-based POLST program development over time to improve the reach of POLST or similar programs across the United States.
DESIGN: An exploratory, prospective cohort study that utilized semistructured telephone interviews was conducted over a 3-year period (2012-2015). Stakeholder representatives from state POLST coalitions (n = 14) were repeatedly queried on time-relevant successes, barriers, and innovations during POLST program development with levels of legislative and medical barriers rated 1 to 10. Interviews were transcribed and analyzed using techniques grounded in qualitative theory.
RESULTS: All coalition representatives reported continuous POLST expansion with improved outreach and community partnerships. Significant barriers to expansion included difficulty in securing funding for training and infrastructure, lack of statewide metric systems to adequately assess expansion, lack of provider support, and legislative concerns. Medical barriers (mean [standard deviation]: 5.0 [0.2]) were rated higher than legislative (3.0 [0.6]; P < .001).
CONCLUSION: POLST programs continue to grow, but not without barriers. Based on the experiences of developing coalitions, we were able to identify strategies to expand POLST programs and overcome barriers. Ultimately the "lessons learned" in this study can serve as a guide to improve the reach of POLST or similar programs.
BACKGROUND/AIM: Appropriate decision-making in end-of-life (EOL) care is essential for both junior and senior physicians. The aim of this study was to compare the decision-making and attitudes of medical students with those of experienced general practitioners (GP) regarding EOL-care.
MATERIALS AND METHODS: A questionnaire presenting three cancer patient scenarios concerning decisions and ethical aspects of EOL-care was offered to 500 Finnish GPs and 639 graduating medical students in 2015-2016.
RESULTS: Responses were received from 222 (47%) GPs and 402 (63%) students. The GPs withdrew antibiotics (p<0.001) and nasogastric tubes (p=0.007) and withheld resuscitation (p<0.001), blood transfusions (p=0.002) and pleural drainage (p<0.001) more often than did the students. The students considered euthanasia and assisted suicide less reprehensible (p<0.001 in both) than did the GPs.
CONCLUSION: Medical students were more unwilling to withhold and withdraw therapies in EOL-care than were the GPs, but the students considered euthanasia less reprehensible. Medical education should include aspects of decision-making in EOL-care.
OBJECTIVE: To increase knowledge of how doctors perceive futile treatments and scarcity of resources at the end of life. In particular, their perceptions about whether and how resource limitations influence end-of-life decision making. This study builds on previous work that found some doctors include resource limitations in their understanding of the concept of futility.
SETTING: Three tertiary hospitals in metropolitan Brisbane, Australia.
DESIGN: Qualitative study using in-depth, semistructured, face-to-face interviews. Ninety-six doctors were interviewed in 11 medical specialties. Transcripts of the interviews were analysed using thematic analysis.
RESULTS: Doctors' perceptions of whether resource limitations were relevant to their practice varied, and doctors were more comfortable with explicit rather than implicit rationing. Several doctors incorporated resource limitations into their definition of futility. For some, availability of resources was one factor of many in assessing futility, secondary to patient considerations, but a few doctors indicated that the concept of futility concealed rationing. Doctors experienced moral distress due to the resource implications of providing futile treatment and the lack of administrative supports for bedside rationing.
CONCLUSIONS: Doctors' ability to distinguish between futility and rationing would be enhanced through regulatory support for explicit rationing and strategies to support doctors' role in rationing at the bedside. Medical policies should address the distinction between resource limitations and futility to promote legitimacy in end-of-life decision making.
BACKGROUND AND OBJECTIVES: In Bahrain, maintaining life support at all costs is a cultural value considered to be embedded in the Islamic religion. We explore end-of-life decision making for brain dead patients in an Arab country where medical cultures are dominated by Western ideas and the lay culture is Eastern.
METHODS: In-depth interviews were conducted from February to April 2018 with 12 Western-educated Bahraini doctors whose medical practice often included end-of-life decision making. Discussions were about who should make withdrawal of life support decisions, how decisions are made and the context for decision making. To develop results, we used the inductive method of thematic analysis.
RESULTS: Informants considered it difficult to engage non-medical people in end-of-life decisions because of people's reluctance to talk about death and no legal clarity about medical responsibilities. There was disagreement about doctors' roles with some saying that end-of-life decisions were purely medical or purely religious but most maintaining that such decisions need to be collectively owned by medicine, patients, families, religious advisors and society. Informants practised in a legal vacuum that made their ethics interpretations and clinical decision making idiosyncratic regarding end-of-life care for brain dead patients. Participants referred to contrasts between their current practice and previous work in other countries, recognising the influences of religious and cultural dimensions on their practice in Bahrain.
CONCLUSIONS: End-of-life decisions challenge Western-trained doctors in Bahrain as they grapple with aligning respect for local culture with their training in the ethical practice of Western medicine.
BACKGROUND: In Germany, practice patterns of conservative renal care (CRC), dialysis withdrawal (DW), and concomitant palliative care in patients who choose these options are unknown.
METHOD: A survey was designed including 13 structured and one open questions on the management and frequency of CRC and DW, local palliative care structure, and fundamentals of the decision-making process, and addressed to the head physicians of all renal centers (n = 193) of a non-profit renal care provider (KfH - Kuratorium für Dialyse und Nierentransplantation, Neu-Isenburg, Germany).
RESULTS: Response rate was 62.2% (n = 122 centers) comprising 14,197 prevalent dialysis patients and 159,652 renal outpatients. Two-thirds of the respondents were men (85% in the age group between 45 and 64 years). Mean time of experience in renal medicine was 22.2 years in men, 20.8 years in women. 94% of all centers provided CRC with a different frequency and proportion of patients (mean 8.4% of the center population, median 5%, range 0-50%). Mean proportion of DW was 2.85% per year (median 2%, range 1-15%). Physicians and center features were not significantly associated with utilization of CRC or DW. Palliative care management varied including local palliative teams, support by general physicians, or by the renal team itself. Hospice care was only established in patients undergoing CRC. Fundamentals of the decision-making process were the desire of the patient (90% in CRC, 67% in DW). Patients undergoing CRC changed their opinion towards treatment modality "frequently" in 18% of the cases, "occasionally" in 73%. Physicians' decisions were mostly driven by presumed fatal prognosis and poor physical or mental conditions of the individual patient. Different barriers to provide palliative care for the renal population like lack of education in palliative medicine, shortness of staff, lack of financial resources, and local palliative care structures were reported.
CONCLUSION: Compared to international numbers, in Germany, proportion of CRC and DW reported by non-profit renal centers is in the lower range. Center practice of palliative care management varies and is driven by availability of local palliative care resources and presumably by attitudes of the renal teams. Quality of palliative care and the decision-making process need further evaluation.
Qu'est-ce que le consentement à la décision médicale pour le patient ? L'auteur revient sur plusieurs notions : consentement, volonté, décision médicale, soins pour ensuite développer son propos sur les populations concernées par le consentement, le cadre, la qualité ou l'intégrité du consentement dans un cadre de soins.
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.
Questions related to end-of-life decision making are common in clinical ethics and may be exceedingly difficult. Chief among these are the provision of cardiopulmonary resuscitation (CPR) and do-not-resuscitate orders (DNRs). To better address such questions, clarity is needed on the values of medical ethics that underlie CPR and the relevant moral framework for making treatment decisions. An informed consent model is insufficient to provide justification for CPR. Instead, ethical justification for CPR rests on the rule of rescue and on substituted interest judgments. Patients' known wishes and values are relevant, particularly in protecting them from unwanted CPR. Clinicians should rescue patients with the means at their disposal, as a prima facie moral imperative, unless there are compelling reasons to refrain. We present a moral framework for making decisions regarding CPR and DNR.
BACKGROUND: Research demonstrates that the attitudes of religious physicians toward end-of-life care treatment can differ substantially from their nonreligious colleagues. While there are various religious perspectives regarding treatment near the end of life, the attitudes of Muslim physicians in this area are largely unknown.
OBJECTIVE: This article attempts to fill in this gap by presenting American Muslim physician attitudes toward end-of-life care decision-making and by examining associations between physician religiosity and these attitudes.
METHODS: A randomized national sample of 626 Muslim physicians completed a mailed questionnaire assessing religiosity and end-of-life care attitudes. Religiosity, religious practice, and bioethics resource utilization were analyzed as predictors of quality-of-life considerations, attitudes regarding withholding and withdrawing life-sustaining treatment, and end-of-life treatment recommendations at the bivariate and multivariable level.
RESULTS: Two-hundred fifty-five (41% response rate) respondents completed surveys. Most physicians reported that religion was either very or the most important part of their life (89%). Physicians who reported consulting Islamic bioethics literature more often had higher odds of recommending active treatment over hospice care in an end-of-life case vignette. Physicians who were more religious had higher odds of viewing withdrawal of life-sustaining treatment more ethically and psychologically challenging than withholding it and had lower odds of agreeing that one should always comply with a competent patient's request to withdraw life-sustaining treatment.
DISCUSSION: Religiosity appears to impact Muslim physician attitudes toward various aspects of end-of-life health-care decision-making. Greater research is needed to evaluate how this relationship manifests itself in patient care conversations and shared clinical decision-making in the hospital.
OBJECTIVE: This article sought to explore ethical issues associated with prioritization decisions in palliative care.
METHODS: As part of a broader series of studies of triage in palliative care, this qualitative substudy was conducted via semi-structured focus groups and individual interviews. Transcripts were subjected to thematic analysis.
SETTING/PARTICIPANTS:: Twenty health professionals working across disciplines (primary, specialist; medicine, nursing, and allied health), service types (inpatient, hospital liaison, and community), and locations (metropolitan and rural) in Victoria, Australia.
RESULTS:: Four themes emerged from the data: (1) Clinicians understood the tension between maintaining service quality with the delivery of a compromised service that sought to respond to demand. (2) They were aware of the influences of relationships and responsibilities upon patient waiting list prioritization, and (3) reported a hierarchy of suffering with certain types of clinical problems viewed as more urgent than others, for example, pain being more urgent than existential distress. (4) Clinicians noted a lack of transparency around waiting lists as they currently exist.
CONCLUSIONS: This study revealed key ethical decision-making issues associated with prioritizing access to palliative care services. Making explicit the processes and influences upon decision-making provides greater transparency of health-care utilization at the end of life.
La décision partagée est celle que le patient prend avec son médecin. Lorsqu’il ne peut plus exprimer sa volonté, la décision est prise par ce dernier à l’issue d’une procédure collégiale. Au sein de ce dispositif, les directives anticipées sont consultées et le témoignage de la personne de confiance pris en compte, à défaut celui des proches. Complétée par la concertation au sein de l’équipe de soins, la procédure constitue une démarche partagée sur le plan de la réflexion et de la responsabilité éthique.
La prise de décision partagée correspond à l’un des modèles de décision médicale où patient et professionnels de santé délibèrent autour des options disponibles et les hiérarchisent selon les préférences du patient. Des aides à la décision peuvent les aider dans ce dialogue. Elles participent à l’amélioration de la qualité des soins.
La prise en charge d’un patient en fin de vie à son domicile demande une réflexion pluridisciplinaire de tous les intervenants. L’information de la personne et de ses proches ainsi que la prise en compte de tous les aspects de l’accompagnement doivent mener à des prises de décision collégiales. La prise en charge est alors globale autour d’un projet de soins concerté.
This perspective review considers analytic features of the design of a longitudinal trial regarding antimicrobial therapy in older terminal cancer patients receiving palliative care. We first overview antimicrobial use at the end of life; both the potential hazards and benefits. Antimicrobial prescribing should consider both initiation as well as cessation of medications when analyzing the burden of medications. Approaches to decision making regarding antimicrobial use are presented and the importance of health literacy in these decision processes. We next present aspects of both feasibility and comparative trial design with a health literacy intervention to reduce antimicrobial use in older terminal cancer patients receiving palliative care. Considerations to clustered randomization and given that infections can reoccur over a trial period, we share suggestions of longitudinal modeling of clustered randomized trial data.
La décision médicale partagée est un processus complexe, notamment concernant l’arrêt des traitements spécifiques en oncologie. D’une part, le patient, plus vulnérable du fait d’une maladie avancée, et ses proches, redoutent cette interruption. D’autre part, l’oncologue dispose de plus en plus de possibilités thérapeutiques grâce aux avancées médicales réalisées ces dernières années. Une étude prospective observationnelle a été menée en oncologie. Elle s’est intéressée aux motifs faisant émerger le questionnement, au degré de concordance entre les différents interlocuteurs (équipe de soins palliatifs, oncologue, patients et proches) et à la décision finalement prise.
La décision médicale d’un prélèvement d’organes est un acte que la loi tend à réduire et à soumettre à une simple logique juridique. La complexité et l’extrême sensibilité des principes, valeurs et sentiments humains en jeu ne s’accommodent pas de cette simplification. Le processus décisionnel fait intervenir plusieurs parties et respecte la temporalité des familles.
Le diagnostic anténatal aboutit parfois à une décision d’interruption médicale de grossesse (IMG). Il s’agit d’une décision partagée par le corps médical et le couple concernant leur futur enfant, juridiquement reconnu comme fœtus tout au long de la grossesse. Les IMG pour indications fœtales ne peuvent être décidées qu’à l’issue d’un parcours de soins où patientes, couples et soignants se doivent d’aboutir à un projet d’avenir “digne et acceptable” pour l’enfant attendu.
Le concept de décision médicale partagée est particulièrement adapté aux soins palliatifs. Dans les équipes, le rôle des psychologues s’articule au quotidien avec celui des médecins et des soignants pour prendre en considération le sujet dans sa globalité et sa singularité. L’accompagnement d’une patiente âgée de 29 ans illustre les enjeux de cette prise de décision.
La loi Leonetti du 22 avril 2005 a posé un cadre législatif définissant l’obstination déraisonnable, que l’on nommait précédemment l’acharnement thérapeutique. La décision de ce qui est raisonnable ou non dans la mise en place ou la poursuite de traitements soit curatifs soit de maintien artificiel de la vie renvoie à une question éthique sur la fin de vie. C’est en interrogeant cette éthique de fin de vie que l’aide-soignante peut parvenir à vivre au mieux toute décision médicale en lien avec une problématique d’obstination déraisonnable.