Background: The high burden of disease-oriented drugs among older adults with limited life expectancy raises important questions about the potential futility of care.
Aim: To describe the use of drugs of questionable clinical benefit during the last 3 months of life of older adults who died from life-limiting conditions.
Design: Longitudinal, retrospective cohort study of decedents. Death certificate data were linked to administrative and healthcare registries with national coverage in Sweden.
Setting: Older adults (=75 years) who died from conditions potentially amenable to palliative care between 1 January and 31 December 2015 in Sweden. We identified drugs of questionable clinical benefit from a set of consensus-based criteria.
Results: A total of 58,415 decedents were included (mean age, 87.0 years). During their last 3 months of life, they received on average 8.9 different drugs. Overall, 32.0% of older adults continued and 14.0% initiated at least one drug of questionable clinical benefit (e.g. statins, calcium supplements, vitamin D, bisphosphonates, antidementia drugs). These proportions were highest among younger individuals (i.e. aged 75–84 years), among people who died from organ failure and among those with a large number of coexisting chronic conditions. Excluding people who died from acute and potentially unpredictable fatal events had little influence on the results.
Conclusion: A substantial share of older persons with life-limiting diseases receive drugs of questionable clinical benefit during their last months of life. Adequate training, guidance and resources are needed to rationalize and deprescribe drug treatments for older adults near the end of life.
This article argues that while the presence and influence of "futility" as a concept in medical decision-making has declined over the past decade, medicine is seeing the rise of a new concept with similar features: suffering. Like futility, suffering may appear to have a consistent meaning, but in actuality, the concept is colloquially invoked to refer to very different experiences. Like "futility," claims of patient "suffering" have been used (perhaps sometimes consciously, but most often unconsciously) to smuggle value judgments about quality of life into decision-making. And like "futility," it would behoove us to recognize the need for new, clearer terminology. This article will focus specifically on secondhand claims of patient suffering in pediatrics, but the conclusions could be similarly applied to medical decisions for adults being made by surrogate decision-makers. While I will argue that suffering, like futility, is not sufficient wholesale justification for making unilateral treatment decisions, I will also argue that claims of patient suffering cannot be ignored, and that they almost always deserve some kind of response. In the final section, I offer practical suggestions for how to respond to claims of patient suffering.
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.
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.
Background: Futile or potentially inappropriate care (futile/PIC) for dying inpatients leads to negative outcomes for patients and clinicians. In the setting of rising end-of-life health care costs and increasing physician burnout, it is important to understand the causes of futile/PIC, how it impacts on care and relates to burnout.
Objectives: Examine causes of futile/PIC, determine whether clinicians report compensatory or avoidant behaviors as a result of such care and assess whether these behaviors are associated with burnout.
Design: Online, cross-sectional questionnaire.
Setting/Subjects: Clinicians at two academic hospitals in New York City.
Methods: Respondents were asked the frequency with which they observed or provided futile/PIC and whether they demonstrated compensatory or avoidant behaviors as a result. A validated screen was used to assess burnout.
Measurements: Descriptive statistics, odds ratios, linear regressions.
Results: Surveys were completed by 349 subjects. A majority of clinicians (91.3%) felt they had provided or “possibly” provided futile/PIC in the past six months. The most frequent reason cited for PIC (61.0%) was the insistence of the patient's family. Both witnessing and providing PIC were statistically significantly (p < 0.05) associated with compensatory and avoidant behaviors, but more strongly associated with avoidant behaviors. Provision of PIC increased the likelihood of avoiding the patient's loved ones by a factor of 2.40 (1.82–3.19), avoiding the patient by a factor of 1.83 (1.32–2.55), and avoiding colleagues by a factor of 2.56 (1.57–4.20) (all p < 0.001). Avoiding the patient's loved ones (ß = 0.55, SE = 0.12, p < 0.001), avoiding the patient (ß = 0.38, SE = 0.17; p = 0.03), and avoiding colleagues (ß = 0.78, SE = 0.28; p = 0.01) were significantly associated with burnout.
Conclusions: Futile/PIC, provided or observed, is associated with avoidance of patients, families, and colleagues and those behaviors are associated with burnout.
Do not attempt cardiopulmonary resuscitation decisions (DNACPR) are considered good medical practice for those dying at the end of natural life. They avoid intrusive and inappropriate intervention. Historically, informing patients of these decisions was discretionary to avoid undue distress. Recent legal rulings have altered clinical guidance: disclosure is now all but obligatory. The basis for these legal judgments was respect for the patient's autonomy as an expression of their human rights. Through critical analysis, this paper explores other bioethical considerations and the potential harms if they are ignored. Arguably, disclosure of DNACPR status on its own will do little to improve patient experience. A focus on good communication with those identified as approaching end-of-life will facilitate personalized care. Discussions around DNACPR may still occur, but only if likely to be beneficial and at a patient-appropriate pace (not dictated by the need to activate the decision).
Après trois ans de contentieux, l'affaire Vincent L. a permis de définir les premières limites d'un régime jurisprudentiel de contestation des décisions médicales en matière de fin de vie. Cette jurisprudence devient un outil procédural, dans un contentieux amené à se développer, et dont l'originalité principale était la contestation devant le tribunal administratif de décisions prises par des médecins.
Origine : BDSP. Notice produite par APHPDOC oR0xGrmm. Diffusion soumise à autorisation
Historiquement et étymologiquement, euthanasie n'est pas un mot grec classique. Les grecs avaient forgé un adverbe, un verbe puis un substantif qui signifiaient que la mort était douce ou belle, mais ils ne leur donnaient pas le même sens assez restrictif qu'on lui donne aujourd'hui, avec intervention d'un tiers. Pourtant, l'Antiquité a bien connu le suicide sous la forme d'une euthanasie. Puis une longue période interdit et condamne sans appel le suicide comme l'euthanasie et les religions juives, chrétiennes et musulmanes partagent toutes le respect absolu de la vie humaine, créée par Dieu. Il lui faut attendre le siècle des Lumières pour voir ressurgir le mot deuthanasie et le XIXe siècle pour que la médecine et les mentalités évoluent. Ce n'est qu'au XXe siècle que l'on osera enfin se (re)poser la question du libre choix de la mort pour la personne concernée ou pour son entourage quand elle ne peut plus s'exprimer, mais avec d'infinies précautions que seul le vocabulaire le plus explicite peut traduire. Aujourd'hui, les pays légifèrent, les uns après les autres, sur le sujet de l'euthanasie, le plus souvent sous la pression de l'opinion publique et des interrogations individuelles et sociologiques. Ainsi se fait jour la diversité des législations et des positions religieuses, pour la plupart inchangées depuis des siècles, mais qui témoignent toutes du caractère toujours infiniment délicat de l'euthanasie. Les êtres humains veulent bien mourir, mais de mort douce !
Le 22 avril 2005, était promulgée la loi "relative aux droits des malades et à la fin de vie". Son examen au Sénat avait été tumultueux, mais le débat à l'Assemblée nationale avait été marqué par une grande sérénité et la volonté de dépasser les oppositions partisanes. Cela mérite d'être relevé et apprécié à sa juste valeur, d'autant que le temps d'élaboration de la loi avait été précédé par une période de profonde émotion collective entretenue par l'intense médiatisation d'un fait divers promu au rang de drame national.
INTRODUCTION: Acute neurological illness often results in severe disability. Five-year life expectancy is around 40%; half the survivors become completely dependent on outside help.
OBJECTIVE: Evaluate the symptoms of patients admitted to a Hospital ward with a diagnosis of stroke, subarachnoid hemorrhage or subdural hematoma, and analyze the role of an In-Hospital Palliative Care Support Team.
MATERIAL AND METHODS: Retrospective, observational study with a sample consisting of all patients admitted with acute neurological illness and with a guidance request made to the In-Hospital Palliative Care Support Team of a tertiary Hospital, over 5 years (2012-2016).
RESULTS: A total of 66 patients were evaluated, with an age median of 83 years old. Amongst them, there were 41 ischaemic strokes, 12 intracranial bleedings, 12 subdural hematomas, and 5 subarachnoid hemorrhages. The median of delay between admission and guidance request was 14 days. On the first evaluation by the team, the GCS score median was 6/15 and the Palliative Performance Scale (PPS) median 10%. Dysphagia (96.8%) and bronchorrhea (48.4%) were the most prevalent symptoms. A total of 56 patients had a feeding tube (84.8%), 33 had vital sign monitoring (50.0%), 24 were hypocoagulated (36.3%), 25 lacked opioid or anti-muscarinic therapy for symptom control (37,9%); 6 patients retained orotracheal intubation, which was removed. In-hospital mortality was 72.7% (n=48).
DISCUSSION AND CONCLUSION: Patients were severely debilitated, in many cases futile interventions persisted, yet several were under-medicated for symptom control. The delay between admission and collaboration request was high. Due to the high morbidity associated with acute neurological illness, palliative care should always be timely provided.
Management of patients with terminal brain disorders can be medically, socially, and ethically complex. Although a growing number of feasible treatment options may exist, there are times when further treatment can no longer meaningfully improve either quality or length of life. Clinicians and patients should discuss goals of care while patients are capable of making their own decisions. However, because such discussions can be challenging, they are often postponed. These discussions are then conducted with patients' health care proxies after patients lose the capacity to make their own decisions. Disagreements may arise when a patient's surrogate desires continued aggressive interventions that are either biologically futile (incapable of producing the intended physiologic result) or potentially inappropriate (potentially capable of producing the patient's intended effect but in conflict with the medical team's ethical principles). This article explores best practices in addressing these types of conflicts in the critical care unit, but these concepts also broadly apply to other sites of care.
Lors d'une mission en Haiti avec Médecins du Monde, le chirurgien qui nous accompagnait pensait avoir diagnostiqué une maladie de Hirschprung chez un bébé de huit mois. Sans possibilité de faire une manométrie rectale ou une biopsie, il conseilla une colostomie. Mais en faitt lorsque les chirurgiens ouvrirent l'abdomen, les masses palpées s'avérèrent être des tumeurs. L'enfant mourut quatre jours plus tard sans avoir reçu aucun traitement.
Est-ce de la médecine palliative ? Oui, dans la mesure où il n'y avait pas de traitement curatif disponible. Non dans la mesure où on a abandonné le patient à ses parents parce qu'on ne pouvait rien faire pour le guérir.
[Début de l'article]
Limiting intensive care is paid increasing attention. In the echoing call for physicians' ethical self-restriction, it is easily overlooked, however, that ethics needs a critical epistemological analysis before it can suffice as an emergency brake to futile treatment. This analysis is provided by the present essay. The authors suggest that the difficulties of resolving moral dilemmas related to limiting intensive care may just be due to the unclarified epistemological status of moral claims. Even if normative ethics cannot prescribe right decisions, but only draw conclusions from defined premises, the premises may or may not be true. Their intertwined descriptive and normative evidence is endorsed in an academic and political discourse. There will necessarily be various demands for rationality in prudent decisions between physicians, their patients and society. These demands are formulated dialogically through critical questions and justified answers. A good argument is the convincing one that, finally and ideally, leads to the absence of open objections. Thus, in the end the rightness of a given decision does not depend on axiomatic moral principles, but is comparative and conditional, as it is given in an omnilateral argument. Neither is it the democratic process of shared decision making that we should evaluate, but rather the argumentative state itself, when we judge the morality of health politics and clinical practice.
BACKGROUND: Acute-on-chronic liver failure (ACLF) is a severe complication of cirrhosis and is defined by organ failure and high rates of short-term mortality. Patients with ACLF are managed with multiorgan support in the intensive care unit (ICU). Currently, it is unclear when this supportive care becomes futile, particularly in patients who are not candidates for liver transplant. The aim of this study was to determine whether the currently available prognostic scores can identify patients with ACLF in whom prolonged ICU care is likely to be futile despite maximal treatment efforts.
METHODS: Data of 202 consecutive patients with ACLF admitted to the ICU at the Royal Free Hospital London between 2005 and 2012 were retrospectively analyzed. Prognostic scores for chronic liver diseases, such as Child-Pugh, Model for End-Stage Liver Disease (MELD), European Foundation for the study of chronic liver failure (CLIF-C) organ failure (OF), and CLIF-C ACLF, were calculated 48 hours after ICU admission and correlated with patient outcome after 28 days.
RESULTS: The CLIF-C ACLF score, compared with all other scores, most accurately predicted 28-day mortality, with an area under the receiver operator characteristic of 0.8 (CLIF-C OF, 0.75; MELD, 0.68; Child-Pugh, 0.66). A CLIF-C ACLF score cutoff = 70 identified patients with a 100% mortality within 28 days. These patients had elevated inflammatory parameters representing a systemic inflammatory response, most often renal failure, compared with patients below this cutoff.
CONCLUSIONS: Patients with ACLF and high CLIF-C ACLF score (= 70) after 48 hours of intensive care may reach a threshold of futility for further ongoing intensive support. The best treatment options in this scenario remain to be determined but may include palliative care.
Allowing physicians to write a do not resuscitate (DNR) or do not administer cardiopulmonary resuscitation order after properly informing patients and their families that death would be irreversible offers a more rational and compassionate approach than traditional shared decision making in establishing a DNR status for some hospitalized patients.
OBJECTIVES: This study determined attitudes of four groups-Korean patients with cancer, their family caregivers, physicians and the general Korean population-towards five critical end-of-life (EOL) interventions-active pain control, withdrawal of futile life-sustaining treatment (LST), passive euthanasia, active euthanasia and physician-assisted suicide.
DESIGN AND SETTING: We enrolled 1001 patients with cancer and 1006 caregivers from 12 large hospitals in Korea, 1241 members of the general population and 928 physicians from each of the 12 hospitals and the Korean Medical Association. We analysed the associations of demographic factors, attitudes towards death and the important components of a 'good death' with critical interventions at EoL care.
RESULTS: All participant groups strongly favoured active pain control and withdrawal of futile LST but differed in attitudes towards the other four EoL interventions. Physicians (98.9%) favoured passive euthanasia more than the other three groups. Lower proportions of the four groups favoured active euthanasia or PAS. Multiple logistic regression showed that education (adjusted OR (aOR) 1.77, 95% CI 1.33 to 2.36), caregiver role (aOR 1.67, 95% CI 1.34 to 2.08) and considering death as the ending of life (aOR 1.66, 95% CI 1.05 to 1.61) were associated with preference for active pain control. Attitudes towards death, including belief in being remembered (aOR 2.03, 95% CI 1.48 to 2.79) and feeling ‘life was meaningful’ (aOR 2.56, 95% CI 1.58 to 4.15) were both strong correlates of withdrawal of LST with the level of monthly income (aOR 2.56, 95% CI 1.58 to 4.15). Believing ‘freedom from pain’ negatively predicted preference for passive euthanasia (aOR 0.69, 95% CI 0.55 to 0.85). In addition, ‘not being a burden to the family’ was positively related to preferences for active euthanasia (aOR 1.62, 95% CI 1.39 to 1.90) and PAS (aOR 1.61, 95% CI 1.37 to 1.89).
CONCLUSION: Groups differed in their attitudes towards the five EoL interventions, and those attitudes were significantly associated with various attitudes towards death.
Advances in critical care and technology capabilities may lead to new ethical encounters in paediatrics, especially in the paediatric intensive care unit (PICU). As each patient has unique psychosocial and clinical condition interactions, paediatricians and healthcare providers must develop and adopt a suitable approach for ethical decision-making in the PICU. The healthcare provider needs to balance the four ethical domains of autonomy, beneficence, non-maleficence and justice, and apply these principles to clinical decision-making. One chief factor for ethical decision-making is to have a patient-centered and family-oriented management that is respectful of cultural background. Healthcare providers also need to observe professional ethical conduct and the applicable national laws. Applying these ethical guidelines in paediatric care ensures a more holistic approach to care, whether in the paediatric wards or the highly technical environment of the PICU. We describe two situations in which the parents of twins with a confirmed lethal disease changed their attitude towards end-of-life from full support to "do not resuscitate" and palliative care, after experiencing the palliative care of the first twin, rather than the futile effect of cardiopulmonary resuscitation in the other twin.
The Act on Decisions on Life-Sustaining Treatment for Patients in Hospice and Palliative Care or at the End of Life came into effect on February 4th, 2018, in South Korea. Based on the Act, all Koreans over the age of 19 years can decide whether to refuse life-sustaining treatments at the end of life via advance directive or physician orders. Hemodialysis is one of the options designated in the Act as a life-sustaining treatment that can be withheld or withdrawn near death. However, hemodialysis has unique features. So, it is not easy to determine the best candidates for withholding/withdrawing hemodialysis at the end of life. Thus, it is necessary to investigate the meaning and implications of hemodialysis at the end of life with ethical consideration of futility and withholding or withdrawal of intervention.
PURPOSE OF REVIEW: This review aims to discuss situations where patients would prefer to consider dying rather than survive, particularly in the context of choosing whether to be subjected to active medical management aimed at increasing their life span.
RECENT FINDINGS: Obviously, there are no randomized trials on evaluating whether patients would choose death rather than life. Moreover, the topic of the review is rarely addressed in a conventional scientific way. Instead, we review the suffering that people may go through when receiving futile care in both the short and long-term in acute hospitals and how this may influence people's decisions about their own Goals of Care.
SUMMARY: The review describes the failure of acute hospitals to recognize people at the end of life until very late and, when they are recognized, the failure to manage the dying process well. The inference is that if patients were genuinely aware of the potential short and long-term suffering involved in futile care, they would consider those states worse, may be worse than death, especially when death is almost certainly inevitable with or without conventional treatment.
BACKGROUND: Futile or potentially inappropriate care (futile/PIC) has been suggested as a factor contributing to clinician well-being; however, little is known about this association.
OBJECTIVE: To determine whether futile/PIC provision is associated with measures of clinician well-being.
DESIGN: Cross-sectional, self-administered, online questionnaire.
SETTING: Two New York City Hospitals.
PARTICIPANTS: Attending physicians, residents, nurses, and physician assistants in the fields of internal medicine, surgery, neurology, or intensive care. Exposure(s): Provision of perceived futile/PIC.
MEASUREMENTS: Main outcomes included (1) clinician burnout, measured using the Physician Worklife Study screen; (2) clinician depression, measured using the Patient Health Questionnaire; and (3) intention to quit, measured using questions assessing thoughts of quitting and how seriously it is being considered.
RESULTS: Of 1784 clinicians who received surveys, 349 participated. Across all clinicians, 91% reported that they either had or had possibly provided futile/PIC to a patient. Overall, 43.4% of clinicians screened positive for burnout syndrome, 7.8% screened positive for depression, and 35.5% reported thoughts of leaving their job as a result of futile/PIC. The amount of perceived futile/PIC provided was associated with burnout (odds ratio [OR] 3.8 [16-30 patients vs 1-2 patients]; 95% confidence interval [CI]: 1.1-12.8) and having thoughts of quitting (OR, 7.4 [16-30 patients vs 1-2 patients]; 95% CI: 2.0-27), independent of depression, position, department, and the number of dying patients cared for.
CONCLUSIONS: A large majority of clinicians report providing futile/PIC, and such care is associated with measures of clinician well-being, including burnout and intention to quit.