Context: Evidence-based resource allocation is receiving increasing attention as we strive for equity, transparency, and cost-effectiveness across health care. In the context of finite resources, which of our patients with terminal illness should be prioritized for urgent palliative care?
Objectives: To develop the scoring system for the novel Responding to Urgency of Need in Palliative Care triage tool.
Methods: Online international discrete choice experiment involving palliative care clinicians to establish the relative importance of seven key attributes of palliative care triage identified during an earlier qualitative study.
Results: Participants (n = 772) were mainly female (79.9%) with a decade of clinical experience. All attributes contributed significantly (all P-values < 0.001) and independently to clinician assessment of urgency. This study found physical suffering (coefficient 3.45; 95% confidence interval: 3.24 to 3.66) was the most important determinant of urgency, followed by imminent dying (coefficient 1.56; 1.43 to 1.69), psychological suffering (coefficient 1.49; 1.37 to 1.60), caregiver distress (coefficient 1.47; 1.35 to 1.59), discrepancy between care needs and care arrangements (coefficient 1.14; 1.02 to 1.26), mismatch between current and desired site of care (coefficient 0.94; 0.85 to 1.03), and unmet communication needs (coefficient 0.84; 0.76 to 0.92).
Conclusion: Palliative care triage, which is complex and contextual, has been made more transparent through this discrete choice experiment. The Responding to Urgency of Need in Palliative Care triage tool provides an important step toward evidence-based assessment of priority for palliative care. Further research is underway to determine the validity of the tool in clinical practice and its impact on patient and caregiver outcomes.
Que ce soit en France ou ailleurs, la question de l'euthanasie divise encore l'opinion publique. La Belgique, en dépénalisant sa pratique depuis 2002, fait figure d'avant-gardiste. Mais au-delà de la polémique, cette question délicate conserve bien souvent une part d'opacité pour les patients et leurs proches, tout comme pour les professionnels de la santé. Engagé depuis quinze ans dans la défense de cette liberté de choix, le docteur François Damas réalise ici un état des lieux des protocoles existants et aborde la réalité du terrain avec humanité et délicatesse.
BACKGROUND: In the Netherlands, Foundation De Einder offers counselling to people who wish to be able to self-determine the timing and manner of their end of life.
AIM: This study explores the experiences with counselling that counselees receive(d) from counsellors facilitated by Foundation De Einder.
METHODS: Open coding and inductive analysis of in-depth interviews with 17 counselees.
RESULTS: Counselling ranged from solely receiving information about lethal medication to combining this with psychological counselling about matters of life and death, and the effects for close ones. Counselees appreciated the availability of the counsellor, their careful and open attitude, feeling respected and being reminded about their own responsibility. Some counselees felt dependent on the counsellor, or questioned their competency. Most counselees collected lethal medication. This gave them peace of mind and increased their quality of life, but also led to new concerns. Few were inclined to use their self-collected medication. Counselling contributed to thinking about if, when and how counselees would like to end their life.
CONCLUSION: Having obtained means to end their lives can offer people feelings of reassurance, which can increase their quality of life, but can also give rise to new concerns. Next to providing information on (collecting) lethal medication, counsellors can play an important role by having an open non-judgemental attitude, providing trustworthy information and being available. These positively valued aspects of counselling are also relevant for physicians taking care of patients who wish to self-determine the timing and manner of their end of life.
Ethical arguments about assisted dying often focus on whether or not respect for an individual's autonomy gives a reason to offer them an assisted death if they want it. In this paper, I present an argument for legalising assisted dying which appeals to the autonomy of people who don't want to die. Adding that option can transform the nature of someone's choice set, enabling them to pursue other options voluntarily where that would otherwise be harder or impossible. This does not contradict the more familiar arguments for legalising assisted dying based on the autonomy of those who seek to die. But it does suggest that a wider constituency of support for that legislative change might be created by emphasising that one need not be in that position to be benefited by the change.
The addition of a do-not-operate (DNO) section to current medical orders for life-sustaining treatment (MOLST) and physician orders for life-sustaining treatment (POLST) medical order forms would more completely document patients' wishes for invasive interventions at the end of life. We propose a modification of the MOLST and POLST forms, in addition to hospital and electronic medical records, to include a DNO section, in addition to preexisting do-not-resuscitate (DNR) and do-not-intubate (DNI) orders, with the goal of reducing suffering from nonbeneficial surgical interventions in patients with severe illness at the end of life.
La bioéthique est née des progrès médicaux d'une part et de la nécessité de se prémunir contre toute répétition des horreurs pratiquées par les expérimentateurs nazies d'autre part. Cela a conduit à des règles très diversement définies dans les différents pays. La France est sous un régime éthique caractérisé par un dirigisme important et des responsabilités confiées essentiellement aux professionnels.
Dans ce livre, il est proposé d'ouvrir un peu plus le champ de la responsabilisation individuelle, de privilégier les droits du malade et d'accroître le respect de la liberté (encadrée) de chacun. En pratique, cela implique notamment moins de restriction dans la possibilité pour les malades en fin de vie de choisir la modalité de leur mort.
Libre et éclairé : voilà comment devrait être un consentement viable, valable et authentique, tant dans le monde de la santé que dans celui des affaires. Mieux même, et plus conforme à l’actualité, est qu’il soit « libre et informé » : cela met en avant la personne concernée plutôt que le message et sa source lumineuse forcément en surplomb. Telles sont en tout cas les conditions qui lui donnent son label aux plans de la loi et de la déontologie, si ce n’est à celui de l’éthique. Pour autant, liberté et information se situent-elles exactement au même niveau fondateur ? Jouent-elles des rôles symétriques dans le processus qui conduit au oui ?
Les soins palliatifs ont le grand mérite d’avoir remis à l’honneur l’usage des conflits. La raison la plus évidente en est que les soins palliatifs confrontent chacun à la finitude de l’existence, au fait d’être mortel et à l’incertitude. Les soins palliatifs dans la médecine moderne, technico-scientifique, présentent une différence notable par rapport à l’accompagnement des mourants que nous connaissions à travers les écrits des philosophes, des historiens, des romanciers, des médecins, des religions. Cette différence réside dans l’idée que nous aurions acquis, maintenant, de décider de l’heure de la mort, de pouvoir en repousser l’heure ou de l’avancer. C’est en partie vrai et faux. La médecine technico-scientifique a, certes, doté l’homme d’un certain pouvoir mais aussi d’une grande illusion. Repousser l’heure de la mort renvoie au mythe de l’immortalité et de la croyance qu’un jour peut-être nous ne mourrons plus. Avancer l’heure de la mort renvoie à la question de notre toute-puissance, du suicide et du suicide assisté et avec cela la plus difficile des questions philosophiques (Camus, 1942).
Le fait est que, dans les années 1980, la prise de conscience des médecins de réanimation d’adultes et d’enfants, du fait que plus de la moitié des décès en réanimation était liée à une décision humaine, a obligé chaque soignant à affronter cette question de l’éthique de la décision et de sa responsabilité. Pendant plusieurs années, cette question avait fait l’objet d’une sorte d’omerta…
Context: Although the early and middle stages of Huntington's disease (HD) and its complications have been well described, less is known about the course of late-stage illness. In particular, little is known about the population of patients who enroll in hospice.
Objectives: Our goal is to describe the characteristics of patients with HD who enrolled in hospice.
Methods: This is a retrospective cohort study of electronic medical record data from 12 not-for-profit hospices in the United States from 2008 to 2012.
Results: Of the 164,032 patients admitted to these hospices, 101 (0.06%) had a primary diagnosis of HD. Their median age was 57 (IQR 48-65) and 53 (52.5%) were women. Most patients were cared for by a spouse (n = 36, 36.6%) or adult child (n = 20, 19.8%). At the time of admission, most patients were living either at home (n = 39, 38.6%) or in a nursing home (n = 41, 40.6%). All were either bedbound or could ambulate only with assistance. The most common symptom reported during enrollment in hospice was pain (n = 34, 33.7%) followed by anxiety (n = 30, 29.7%), nausea (n = 18, 17.8%), and dyspnea (n = 10, 9.9%). Patients had a median length of stay in hospice of 42 days, which was significantly longer than that of other hospice patients in the sample (17 days), P < 0.001. Of the 101 patients who were admitted to hospice, 73 died, 11 were still enrolled at the time of data analysis, and 17 left hospice either because they no longer met eligibility criteria (n = 14, 13.7%) or because they decided to seek treatment for other medical conditions (n = 3, 3.0%). Of the 73 patients who died while on hospice, most died either in a nursing home (n = 29; 40%) or a hospital (n = 27; 37%). Seventeen patients (23%) died at home. No patient that started in a facility died at home.
Conclusion: Patients with HD are admitted to hospice at a younger age compared with other patients (57 vs. 76 years old) but have a significant symptom burden and limited functional status. Although hospice care emphasizes the importance of helping patients to remain in their homes, only a minority of these patients were able to die at home.
Background: We aimed to explore the shared decision-making context at the limit of viability (weeks 22-25 of gestation) through analyzing neonatologist's communication strategies with parents and their possible impact on survival and neurodevelopmental impairment (NDI) outcomes.
Methods: A mixed methods approach was applied where a systematic literature search and in-depth semi-structured interviews with five heads of neonatology departments and one clinical ethicist from the Austrian context were integrated into a literature review. The aim was to identify decision practice models and the choice context specific to Austria.
Results: Professional biases, parental understanding, and the process of information giving were identified as aspects possibly influencing survival and NDI outcomes. Institutions create self-fulfilling prophecies by recommending intensive/palliative care based upon their institutional statistics, yet those vary considerably among high-income countries. Labelling an extremely preterm (EP) infant by the gestational week was shown to skew the estimates for survival while the process of information giving was shown to be subject to framing effect and other cognitive biases.
Conclusion: Communication strategies of choice options to parents may have an impact on the way parents decide and hence also on the outcomes of EP infants.
INTRODUCTION: An Advance Healthcare Directive (AHD) is a written document that contains a patient-in-care's will and preferences concerning the treatment options available to them, should they lack decision-making capacity. AHDs are completed within a broader framework known as Advance Care Planning. No study has explored the viewpoint of Spanish mental healthcare professionals towards AHDs.
AIM: To explore the viewpoint of mental health professionals towards the implementation of AHDs in mental health.
METHOD: A qualitative study was conducted using semi-structured interviews that were thematically analysed.
FINDINGS: Three main themes were identified: care planning culture; barriers for the practical management of AHDs; and reasons to not honour patient-in-care AHDs.
DISCUSSION: Professionals find it pragmatically difficult to stop applying traditional paternalistic practices. To implement AHDs, improving the knowledge and awareness of AHDs and management of non-technical skills through training is required. Such training should include users and families and allow for compliance with United Nations requirements.
IMPLICATIONS FOR PRACTICE: AHDs offer important information regarding user preferences, although they pose challenges for practices. Acquiring an up-to-date perspective on the attitudes of professionals towards AHDs allows organizations to attend to particular aspects that require reinforcement. Wider awareness, staff training, and new ways of relating to users are necessary to implement AHDs in Spanish context.
RELEVANCE STATEMENT: A better understanding of the attitudes of Spanish mental health professionals towards AHDs was achieved. Despite the implementation of AHDs being an important and potentially beneficial initiative, mental health professionals find many pragmatic issues that need addressing before AHDs become a reality in their clinical practice. Wider awareness, staff training, personalized assistance and new ways of relating to users are required to implement AHDs in everyday practice.
Quite well, for cardiopulmonary resuscitation (CPR). Most patients (91%-100%) who select "do not resuscitate" (DNR) on their physician's orders for life-sustaining treatment (POLST) forms are allowed a natural death without attempted CPR across a variety of settings (community, skilled nursing facilities, emergency medical services, and hospice). Few patients (6%) who select "comfort measures only" die in the hospital, whereas more (22%) who choose "limited interventions," and still more (34%) without a POLST form, die in the hospital (strength of recommendation [SOR]: B, large, consistent cross-sectional and cohort studies).
Almost all temporomandibular joint (TMJ) disc displacement disorder care in the US is palliative. Palliative care is directed at symptom reduction. Night guards, occlusal guards, flat-plane appliances, anti-inflammatories, muscle relaxants, and pain medicines, including opioids, are palliative care.
BACKGROUND: This study aimed to analyze the determinants of patients' choice between palliative chemotherapy and best supportive care (BSC) and to investigate how this choice affects overall survival (OS) and length of hospitalization according to Eastern Cooperative Oncology Group (ECOG) performance status (PS).
METHODS: An oncologist explained the palliative chemotherapy and BSC options to 129 patients with incurable cancer during their first consultation. Data on the ECOG PS, treatment decision, OS, and the length of hospitalization were retrospectively collected over 4 years.
RESULTS: Patients with an ECOG PS of 0-2 chose palliative chemotherapy more often than those with an ECOG PS of 3-4 (P<0.01). Patients with 70 years chose palliative chemotherapy more often than those with >70 (P<0.05). And patients with gastric cancer and colon cancer chose palliative chemotherapy more often than those with CUP (carcinoma of unknown primary) (P<0.05, P<0.05 respectively). Factors associated with a significantly poorer OS in an adjusted analysis included the ECOG PS and treatment decision (hazard ratios: 0.18 and 0.43; P<0.001, P<0.01 respectively). In patients with an ECOG PS of 0-2, palliative chemotherapy was not associated with a longer OS compared with BSC (median OS: 14.5 vs. 6.8 months, respectively; P=0.144). In patients with an ECOG PS of 3-4, palliative chemotherapy resulted in a significant survival gain compared to with BSC (median OS: 3.8 vs. 1.4 months, respectively; P<0.05). Strong positive correlations between OS and the length of hospitalization were observed in patients with an ECOG PS of 3-4 who underwent palliative chemotherapy (r2=-0.683) and the length of hospitalization was approximately one-third of their OS.
CONCLUSIONS: The determinants for treatment choice were age, ECOG PS and type of cancer, not sex difference. Oncologists should explain to patients that OS and the length of hospitalization vary according to the ECOG PS when selecting between palliative chemotherapy and BSC.
To implement the National End of Life Care strategy and enable more people to express and achieve their preferences about care at the end of life, senior clinicians outside palliative medicine need to make it a routine part of their practice. However, it is acknowledged that recognising that people are entering the last phase of their illness is not always straightforward, and having conversations about aims of treatment and planning for future care may not be easy. In order to begin to address these challenges, funding was sought from the Yorkshire and the Humber Strategic Health Authority (SHA), and subsequently Health Education England, Yorkshire and the Humber (HEEYH), to pilot a development programme in 2 acute trusts. 2 palliative medicine consultants shared the trainer role at each site, supporting hospital consultants from a range of specialties, with a GP to give a community perspective. The programme involved individual clinicians identifying their own learning needs and specific issues for end-of-life care in their patients. The group met together monthly in action learning sets to discuss issues in a safe yet challenging environment. Following evaluation using a combination of training needs analyses, feedback questionnaires, audits and service evaluations, it was modified slightly and repiloted in 2 further trusts as 'Rethinking Priorities'. This paper describes the programme and its outcomes, especially in relation to participants' learning, service development and leadership. It also highlights the challenges, including different learning styles, the concept of action learning, obtaining funding and dedicated time, and how to evaluate the effectiveness of a programme. Overall, it suggests that an educational initiative based on clinicians identifying their own learning needs, and using an action learning approach to explore issues with other colleagues, with the addition of some targeted sessions, can result in positive change in knowledge, behaviour and clinical practice.
One of the most prominent features of the U.S. labor force is sex segregation among college majors and across career choices. Hegemonic cultural gender beliefs shape career choices and most men and women go into gender typical majors and occupations, even in death care industries. To better understand how cultural gender beliefs shape occupational choice and socialization, this article investigates the gendered pathways to funeral directing, an occupation historically male-dominated and currently feminizing. Using 21 interviews with mortuary science students, the findings indicate gender differences in the pathways to funeral work and highlight how occupational choice and socialization into funeral work is a gendered process.
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: Oklahoma's Advance Directive completion rate is less than 10%. We compared the implementation performance of 2 advance directive forms to determine which form could be more successfully disseminated.
METHODS: The implementation of the Oklahoma Advance Directive (OKAD) and the Five Wishes form were compared in an 8-month pair-matched cluster randomized study in 6 primary care practices. The outcomes measured during the 22-week implementation included form offering rate, acceptance/completion rate by patients, and documentation in the chart. Twenty semistructured interviews with patients and clinicians were conducted to assess intervention experience.
RESULTS: A total of 2748 patient encounters were evaluated. OKAD was offered in 33% of eligible patient visits (493/1494) and accepted 54% of the time (266/493). Five Wishes was offered in 36% of eligible patient visits (450/1254) and accepted 82% of the time (369/450). Unadjusted analyses found no significant difference in offering of advance directive forms between groups. However, the odds of accepting Five Wishes were 3.89 times that of OKAD (95% CI, 2.88 to 5.24; P < .0001). Logistic regression models controlling for several confounders indicated that the acceptance of Five Wishes was favored significantly over OKAD (OR = 1.52; 95% CI, 1.27 to 1.81; P < .0001). Qualitative analyses indicated a clear clinician and patient preference for Five Wishes.
CONCLUSIONS: Results suggest that Five Wishes was more readable, understandable, appealing, and usable. It seemed to capture patient preferences for end-of-life care more effectively and it more readily facilitated patient-clinician conversations.
The debate around assisted dying in the UK shows that patients are not offered enough choice in how illness at the end of life is managed. Yes, for many patients, end of life care is good, but for some it is not how they would choose to end their days.
Assisted dying would let terminally ill people access drugs to end their own lives, under strict conditions. The Suicide Act, which prohibits assisted dying, has been in place since 1961—there is a need now for fresh, informed debate. This is why I welcome the decision by the Royal College of Physicians of London (RCP) to survey its members on assisted dying.4
At present, it is the perceived rigid opposition of doctors that blocks any serious review of the law. Parliamentarians have used the opposition of the BMA and medical royal colleges to justify rejecting legislative change.
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Olivier Abel conclut cet ouvrage en évoquant la double conception de la mort : l'une qui donne le choix de mourir, l'autre protégeant les plus vulnérables jusqu'au bout de la vie. Deux conceptions différentes qui incitent l'auteur à penser des occasions de paroles, "tout un va-et-vient- entre la parole des uns et des autres", et d'accepter durablement de "vivre avec" le problème.