Ce n'est pas le suicide, la rationalité ou la liberté dont il serait parfois l'expression, qui est ici mon objet, mais l'appréciation de la nature de l'aide apportée à quiconque réclame assistance au suicide. Il s'agit bien de l'assistance au suicide et non de l'euthanasie, car ces deux situations, qui présentent des similitudes, doivent être différenciées : fournir à une personne les moyens de se supprimer n'est pas la supprimer. Dans le cas du suicide assisté, le tiers n'occupe pas la même place que dans l'euthanasie puisqu'il met à disposition le produit toxique destiné à être absorbé par le patient au lieu de pratiquer lui-même l'injection létale. Lors d'un geste euthanasique, un tiers est nécessairement présent et c'est lui qui met fin aux jours de la personne. Ce n'est pas le cas du suicide assisté où le tiers peut être absent.
Cruse Bereavement Care is marking its 60th year with events throughout 2019. In July the anniversary conference Bereavement Care – Past Present and Future hosted an international line-up of speakers. Former Cruse CEO Debbie Kerslake hosted the final panel session which looked to the future.
In this article Cruse Life President Colin Murray Parkes describes the early days of Cruse and how pioneers brought about the science of the care of the dying and bereaved, tracing the development of grief counselling and the body of Cruse volunteers who provide today’s invaluable work.
C'est l'histoire d'un jeune homme de 17 ans, Parker Santé. Depuis le décès de son père il y a 5 ans, il n'a pas prononcé un mot. Pendant que ses camarades de classe postulent à l'université, lui sèche les cours du lycée et traîne dans les hôtels chics de San Francisco pour parfaire sa technique de pickpocket. Un jour, il rencontre Zelda Toth aux cheveux argentés. Il dérobe de l'argent dans son sac à main. Mais il est très surpris, elle ne le dénonce pas et lui dit qu'elle n'en aura bientôt plus l'utilité. Le livre décrit leur cheminement commun pour redonner goût à la vie l'un à l'autre.
In 1900, most Americans gave birth and died at home, with minimal medical intervention. By contrast, most Americans today begin and end their lives in hospitals. The medicalization we now see is due in large part to federal and state policies that draw patients away from community-based providers, such as birth centers and hospice care, and toward the most intensive and costliest kinds of care. But the evidence suggests that birthing and dying people receive too much—even harmful—medical intervention.
In The Medicalization of Birth and Death, political scientist Lauren K. Hall describes how and why birth and death became medicalized events. While hospitalization provides certain benefits, she acknowledges, it also creates harms, limiting patient autonomy, driving up costs, and causing a cascade of interventions, many with serious side effects. Tracing the regulatory, legal, and financial policies that centralize care during birth and death, Hall argues that medicalization reduces competition, stifles innovation, and prevents individuals from accessing the most appropriate care during their most vulnerable moments. She also examines the profound implications of policy-enforced medicalization on informed consent and shows how medicalization challenges the healthcare community's most foundational ethical commitments.
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In 2010, the American Academy of Neurology (AAN) published updated official guidelines for specific practices involved in the determination of death by neurologic criteria for adult patients, otherwise known as brain death. Most states, however, do not have laws mandating the standard adoption of the AAN guidelines. The responsibilities for creating and implementing brain death determination policies thus falls on individual hospitals. As a result, significant variability in practice exists between hospitals and even between providers. This review highlights the ways in which and the extent to which adult brain death determination varies across the US, while also making the case that such persistent levels of heterogeneity call for improvements in standardizing training in brain death determination.
CONTEXT: Most of the 20,000 US children dying of serious illnesses annually die in the hospital. It is unknown if this hospital death predominance reflects family wishes or systemic issues such as lack of hospice access. Hence, we need to better understand location of death preferences for children and their families.
OBJECTIVE: To better understand location of death preferences in North America, we reviewed the literature to examine the evidence for and against home death in seriously ill children (0-18years).
METHODS: We searched English articles in PubMed, PsycINFO, and Embase published 2000-2018 for articles related to parental, child/adolescent, and provider preference for death location and articles that correlated death location with bereavement or quality of life outcomes.
RESULTS: The search results (n=877 articles and n=58 abstracts of interest) were reviewed and 34 relevant articles were identified. Parent, child, and provider preferences, bereavement outcomes, and associated factors all point to some preference for home death. These findings should be interpreted with several caveats: 1) Many studies are small and prone to selection bias, 2) Not all families prefer home death and some that do are not able to achieve home death due to inadequate home support, 3) Studies of bereavement outcomes are lacking.
CONCLUSION: Adequate resources are needed to ensure children can die in their chosen location - be that home, hospital, or free-standing hospice. This review highlights research areas needed to better understand death location preference and programs and policies that will support home death for those that desire it.
Background: Heart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers. Families are rarely prepared for worsening HF and are not informed about end-of-life and palliative care (EOLPC) conservative comfort options especially during the end stage. West Virginia (WV) has the highest rate of HF deaths in the U.S. where 14% of the population over 65 years have HF. Thus, there is a need to investigate a new family EOLPC intervention (FamPALcare), where nurses coach family-managed advanced HF care at home.
Methods: This study uses a randomized controlled trial (RCT) design stratified by gender to determine any differences in the FamPALcare HF patients and their family caregiver outcomes versus standard care group outcomes (N = 72). Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for advanced HF. Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials. Intervention group will receive routine standard care, plus 5-weekly FamPALcare intervention delivered by community-based nurses. The intervention sessions involve coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions based on patients’ preferences. Data are collected at baseline, 3, and 6 months. Recruitment is from sites affiliated with a large regional hospital in WV and community centers across the state.
Discussion: The outcomes of this clinical trial will result in new knowledge on coaching techniques for EOLPC and approaches to palliative and end-of-life rural home care. The HF population in WV will benefit from a reduction in suffering from the most common advanced HF symptoms, selecting their preferred EOLPC care options, determining their advance directives, and increasing skills and resources for advanced HF home care. The study will provide a long-term collaboration with rural community leaders, and collection of data on the implementation and research procedures for a subsequent large multi-site clinical trial of the FamPALcare intervention. Multidisciplinary students have opportunity to engage in the research process.
Although palliative care (PC) has become increasingly familiar, considerable gaps persist in access to and use of services. Community-based programs remain rare, and low-income, minority communities significantly under-utilize hospice and palliative services. We used community-based participatory research (CBPR) methods to conduct a mixed-methods community needs assessment of seriously-ill older adults (n=100) and providers from community-based programs and churches (n=41) in an urban medically-underserved community in the U.S. to explore: (I) the prevalence and severity of illness-related symptoms and psychosocial-spiritual concerns; (II) the scope and quality of community supports helping older adults manage their symptoms; and (III) the perceptions and utilization of palliative and supportive care services among older adults and community-based service providers. Participants reported high rates of chronic illness-related symptoms (i.e., pain, fatigue, sleeping difficulties, depression, and anxiety), and many described unmet needs around symptom management. Few had ever utilized PC or pain management services, and most relied primarily on family, friends, and faith communities to help them manage burdensome symptoms. Barriers included lack of familiarity with PC, limited access and financial concerns. Older adults were largely unfamiliar with PC, and many described unmet needs and desire for help with symptom burden. Findings support the need to further explore community-level and cultural barriers to PC among diverse, underserved older adults. Development of innovative community partnerships may help raise awareness of PC and address the physical and psychosocial-spiritual challenges facing chronically-ill minority older adults and their families.
The question of a physician's involvement in aid in dying (or "assisted suicide") is being debated across the country. This article adopts no one position because its authors hold contrasting views. It aims instead to articulate the strongest arguments in favor of aid in dying and the strongest arguments opposed. It also addresses relevant terminology and reviews the history of its legalization in the United States.
The goal of this work is to assess the beliefs of US physicians about the national legalization of physician-assisted suicide (PAS). We sent a survey to 1000 randomly chosen physicians from around the US. Our survey indicates that 60% of physicians thought PAS should be legal, and of that 60%, 13% answered "yes" when asked if they would perform the practice if it were legal. Next, 49% of physicians agreed that most patients who seek PAS do so because of pain, and 58% agreed that the current safeguards in place for PAS, in general, are adequate to protect patients. With respect to specific safeguards, 60% disagreed with the statement that physicians who are not psychiatrists are adequately trained to screen for depression in patients seeking PAS, and 60% disagreed with the idea that physicians can predict with certainty whether a patient seeking PAS has 6 months or less to live. Finally, about one-third (30%) of physicians thought that the legalization of PAS would lead to the legalization of euthanasia, and 46% agreed that insurance companies would preferentially cover PAS over possible life-saving treatments if PAS was legalized nationally. Our survey results suggest several conclusions about physicians' beliefs about PAS. The first is that there is a discrepancy between willingness to endorse and willingness to practice PAS. Second, physicians are generally misinformed with regard to why patients seek PAS, and they are uncertain about the adequacy of safeguards. Third, physicians are still wary of the slippery slope with respect to the legalization of PAS nationwide.
OBJECTIVES: Reliable national estimates of hospice use and underuse are needed. Additionally, drivers of hospice use in the United States are poorly understood, especially among noncancer populations. Thus the objectives of this study were to (1) provide reliable estimates of hospice use among adults in the United States; and (2) identify factors predicting use among decedents and within subsamples of cancer and noncancer deaths.
DESIGN: We conducted a prospective cohort study using the Health and Retirement Study survey. Excluding sudden deaths, we used data from the 2012 survey wave to predict hospice use in general, and then separately for cancer and non-cancer deaths.
SETTING: Study data were provided by a population-based sample of older adults from the U.S.
PARTICIPANTS: We constructed a sample of 1,209 participants who died between the 2012 and 2014 survey waves.
MEASUREMENTS: Hospice utilization was reported by proxy. Exposure variables included demographics, functionality (activities of daily living [ADLs]), health, depression, dementia, advance directives, nursing home residency, and cause of death.
RESULTS: Hospice utilization rate was 52.4% for the sample with 70.8% for cancer deaths and 45.4% for noncancer deaths. Fully adjusted model results showed being older (odds ratio [OR] = 1.54), less healthy (OR = .79), having dementia (OR = 1.52), and having cancer (OR = 5.47) were linked to greater odds of receiving hospice. Among cancer deaths, being older (OR = 1.64) and female (OR = 2.54) were the only predictors of hospice use. Among noncancer deaths, increased age (OR = 1.58), more education (OR = 1.56), being widowed (OR = 1.55), needing help with ADLs (OR = 1.13), and poor health (OR = .77) were associated with hospice utilization.
CONCLUSION: Findings suggest hospice remains underutilized, especially among individuals with noncancer illness. Extrapolating results to the US population, we estimate that annually nearly a million individuals who are likely eligible for hospice die without its services. Most (84%) of these decedents have a noncancer condition. Interventions are needed to increase appropriate hospice utilization, particularly in noncancer care settings.
CONTEXT: A central approach of palliative care has been to provide holistic care for people who are dying, terminally ill or facing life-limiting illnesses while neither hastening nor postponing death. Assisted dying laws allow eligible individuals to receive medically administered or self-administered medication from a health provider to end their life. The implementation of these laws in a growing number of jurisdictions therefore poses certain challenges for palliative care.
OBJECTIVES: To analyse the research literature about the relationship of assisted dying with palliative care, in countries where it is lawful.
METHODS: A five-stage scoping review process was adapted from the Joanna Briggs Institute. Data sources searched through October 2018 were MEDLINE, CINAHL, PsychINFO, SCOPUS, and ProQuest dissertations and theses, with additional material identified through hand searching. Research studies of any design were included, but editorials or opinion articles were excluded.
RESULTS: After reviewing 5778 references from searches, 105 were subject to full-text review. 16 studies were included: from Belgium (4), Canada (1), Switzerland (2) and the United States (9). We found the relationship between assisted dying and palliative care practices in these locations took varied and sometimes combined forms: supportive, neutral, coexisting, not mutually exclusive, integrated, synergistic, cooperative, collaborative, opposed, ambivalent and conflicted.
CONCLUSION: The studies in this review cast only partial light on challenges faced by palliative care when assisted dying is legal. There is pressing need for more research on the involvement of palliative care in the developing practices of assisted dying, across a growing number of jurisdictions.
Background: As of 2019, ten jurisdictions in the United States have authorized physicians to prescribe a lethal dose of medication to a terminally ill patient for the purpose of hastening death. Relatively little bioethics scholarship has addressed the question of whether physicians have an obligation to inform qualifying patients about aid-in-dying (AID) in permissive jurisdictions and little is known about providers' actual communication practices with respect to this issue.
Methods: One hundred and forty-four in-depth, semi-structured interviews were conducted and analyzed using an inductive analytic approach as part of the Vermont Study on Aid-in-Dying.
Results: Seventeen respondents, 14 physicians and 3 nurse practitioners, met the inclusion criteria for this sub-study. Eleven respondents indicated that they at least sometimes inform patients about AID. Respondents described multiple factors that influence whether or not they might initiate discussions of AID, including the importance of informing patients of their options for end-of-life care, worries about undue influence, and worries about the potential effects on the patient-provider relationship. For those providers who do initiate discussion of AID at least some of the time, attention to the particulars of each individual patient's situation and the context of the discussion appear to play a role in shaping communication about AID.
Conclusions: While initiating a clinical discussion of AID is undoubtedly challenging, our study provides compelling descriptive evidence that some medical providers who support AID do not unilaterally follow the conventional bioethics wisdom holding that they ought to wait for patients to introduce the topic of AID. Future research should investigate how to approach these discussions so as to minimize ethical worries about undue influence or potential negative consequences.
Importance: Overall, 1 of 5 decedents in the United States is admitted to an intensive care unit (ICU) before death.
Objective: To describe structures, processes, and variability of end-of-life care delivered in ICUs in the United States.
Design, Setting, and Participants: This nationwide cohort study used data on 16 945 adults who were cared for in ICUs that participated in the 68-unit ICU Liberation Collaborative quality improvement project from January 2015 through April 2017. Data were analyzed between August 2018 and June 2019.
Main Outcomes and Measures: Published quality measures and end-of-life events, organized by key domains of end-of-life care in the ICU.
Results: Of 16 945 eligible patients in the collaborative, 1536 (9.1%) died during their initial ICU stay. Of decedents, 654 (42.6%) were women, 1037 (67.5%) were 60 years or older, and 1088 (70.8%) were identified as white individuals. Wide unit-level variation in end-of-life care delivery was found. For example, the median unit-stratified rate of cardiopulmonary resuscitation avoidance in the last hour of life was 89.5% (interquartile range, 83.3%-96.1%; range, 50.0%-100%). Median rates of patients who were pain free and delirium free in last 24 hours of life were 75.1% (interquartile range, 66.0%-85.7%; range, 0-100%) and 60.0% (interquartile range, 43.7%-85.2%; range, 9.1%-100%), respectively. Ascertainment of an advance directive was associated with lower odds of cardiopulmonary resuscitation in the last hour of life (odds ratio, 0.70; 95% CI, 0.49-0.99; P = .04), and a documented offer or delivery of spiritual support was associated with higher odds of family presence at the time of death (odds ratio, 1.95; 95% CI, 1.37-2.77; P < .001). Death in a unit with an open visitation policy was associated with higher odds of pain in the last 24 hours of life (odds ratio, 2.21; 95% CI, 1.15-4.27; P = .02). Unsupervised cluster analysis revealed 3 mutually exclusive unit-level patterns of end-of-life care delivery among 63 ICUs with complete data. Cluster 1 units (14 units [22.2%]) had the lowest rate of cardiopulmonary resuscitation avoidance but achieved the highest pain-free rate. Cluster 2 (25 units [39.7%]) had the lowest delirium-free rate but achieved high rates of all other end-of-life events. Cluster 3 (24 units [38.1%]) achieved high rates across all favorable end-of-life events.
Conclusions and Relevance: In this study, end-of-life care delivery varied substantially among ICUs in the United States, and the patterns of care observed suggest that units can be characterized as higher and lower performing. To achieve optimal care for patients who die in an ICU, future research should target unit-level variation and disseminate the successes of higher-performing units.
Individuals with terminal illness are dying behind bars and many state prison administrators have incorporated on-site hospice and palliative care services. Little is known, however, about these programs since a 2010 study of prison hospice characteristics. We provide an updated description and reflection of current hospice and palliative care programs in state prisons serving incarcerated persons with terminal illness. A cross-sectional survey was sent to representatives of all known prisons offering hospice and palliative care programs and services (N = 113). Questions were drawn from an earlier iteration regarding interdisciplinary team (IDT) membership, training length and topics, peer caregivers, visitation policies, bereavement services, perceived stakeholder support, and pain management strategies. Additional questions were added such as estimated operational costs, peer caregiver input in patient care, and the strengths and weaknesses of such programs. Frequency distributions were calculated for all study variables. Responding representatives (n = 33) indicated IDTs remain integral to care, peer caregivers continue to support dying patients, and perceived public support for these programs remains low. Reduced enthusiasm for the programs may negatively influence administrative decision-making and program resources. Further, peer caregiver roles appear to be changing with caregivers charged with fewer of the identified tasks, compared with the 2010 study.
BACKGROUND: Social isolation is a risk factor for poor health that influences the well-being older adults.
OBJECTIVE: We compare advance care planning (ACP) engagement of older adults who were severely socially isolated, socially isolated, and not socially isolated.
DESIGN: Cross-sectional analysis of the 2012 National Health and Aging Trends Study (NHATS).
SETTING: United States of America.
PARTICIPANTS: A total of 2015 older adults (aged =65 years) randomly selected from a representative sample of community-dwelling Medicare beneficiaries to participate in an ACP module as part of an annual in-person interview.
MEASUREMENTS: We classified participants in three groups: severely socially isolated, socially isolated, or not socially isolated. ACP refers to three (yes/no) questions regarding whether a participant had a: (1) prior discussion about care preferences in the case of serious illness (EOL Discussion); (2) durable power of attorney (DPOA); and (3) advance directive (AD). We performed logistic regression analyses to examine the association between social isolation and ACP.
RESULTS: Approximately 23% of older adults were either severely socially isolated or socially isolated. Older adults who experienced social isolation were less likely to engage in ACP than those who were not socially isolated. In adjusted analysis, older adults who were socially isolated had lower odds of having an EOL discussion (adjusted odds ratio [AOR] = 0.65; 95% confidence interval [CI] = 0.49-0.87) or having a DPOA (AOR = 0.71; 95% CI = 0.53-0.96) compared to those who were not socially isolated.
CONCLUSION: Social isolation is associated with lower engagement in ACP. Clinicians should identify older adults who are at risk for or experience social isolation as they may benefit from targeted ACP efforts.
OBJECTIVES: To determine the prevalence of clinician perception of inappropriate cardiopulmonary resuscitation (CPR) regarding the last out--of-hospital cardiac arrest (OHCA) encountered in an adult 80 years or older and its relationship to patient outcome.
DESIGN: Subanalysis of an international multicenter cross-sectional survey (REAPPROPRIATE).
SETTING: Out-of-hospital CPR attempts registered in Europe, Israel, Japan, and the United States in adults 80 years or older.
PARTICIPANTS: A total of 611 clinicians of whom 176 (28.8%) were doctors, 123 (20.1%) were nurses, and 312 (51.1%) were emergency medical technicians/paramedics.
RESULTS AND MEASUREMENTS: The last CPR attempt among patients 80 years or older was perceived as appropriate by 320 (52.4%) of the clinicians; 178 (29.1%) were uncertain about the appropriateness, and 113 (18.5%) perceived the CPR attempt as inappropriate. The survival to hospital discharge for the “appropriate” subgroup was 8 of 265 (3.0%), 1 of 164 (.6%) in the “uncertain” subgroup, and 2 of 107 (1.9%) in the “inappropriate” subgroup (P = .23); 503 of 564 (89.2%) CPR attempts involved non-shockable rhythms.
CPR attempts in nursing homes accounted for 124 of 590 (21.0%) of the patients and were perceived as appropriate by 44 (35.5%) of the clinicians; 45 (36.3%) were uncertain about the appropriateness; and 35 (28.2%) perceived the CPR attempt as inappropriate. The survival to hospital discharge for the nursing home patients was 0 of 107 (0%); 104 of 111 (93.7%) CPR attempts involved non-shockable rhythms.
verall, 36 of 543 (6.6%) CPR attempts were undertaken despite a known written do not attempt resuscitation decision; 14 of 36 (38.9%) clinicians considered this appropriate, 9 of 36 (25.0%) were uncertain about its appropriateness, and 13 of 36 (36.1%) considered this inappropriate.
CONCLUSION: Our findings show that despite generally poor outcomes for older patients undergoing CPR, many emergency clinicians do not consider these attempts at resuscitation to be inappropriate. A professional and societal debate is urgently needed to ensure that first we do not harm older patients by futile CPR attempts.
BACKGROUND: Racial and ethnic minorities are at risk for disparities in quality of care after out-of-hospital cardiopulmonary arrest (OHCA). As such, we examined associations between race and ethnicity and use of guideline-recommended and life-sustaining procedures during hospitalizations for OHCA.
METHODS: This was a retrospective study of hospitalizations for OHCA in all acute-care, non-federal California hospitals from 2009 to 2011. Associations between the use of (1) guideline-recommended procedures (cardiac catheterization for ventricular fibrillation/tachycardia, therapeutic hypothermia), (2) life-sustaining procedures (percutaneous endoscopic gastrostomy (PEG)/tracheostomy, renal replacement therapy (RRT)), and (3) palliative care and race/ethnicity were examined using hierarchical logistic regression analysis.
RESULTS: Among 51,198 hospitalizations for OHCA, unadjusted rates of cardiac catheterization were 34.9% in Whites, 19.8% in Blacks, 27.2% in Hispanics, and 30.9% in Asians (P < 0.01). Rates of therapeutic hypothermia were 2.3% in Whites, 1.1% in Blacks, 1.3% in Hispanics, and 1.9% in Asians (P < 0.01). Rates of PEG/tracheostomy and RRT were 2.2% and 9.8% in Whites, 5.7% and 19.9% in Blacks, 4.2% and 19.9% in Hispanics, and 3.4% and 18.2% in Asians, respectively (P < 0.01). Rates of palliative care were 14.8% in Whites, 9.6% in Blacks, 10.1% in Hispanics, and 14.3% in Asians (P < 0.01). Differences in utilization of procedures persisted after adjustment for patient and hospital-related factors.
CONCLUSION: Racial and ethnic minorities are less likely to receive guideline-recommended interventions and palliative care, and more likely to receive life-sustaining treatments following OHCA. These findings suggest that significant disparities exist in medical care after OHCA.