Nous proposons une réflexion autour de l'accompagnement éducatif de personnes affectées par une maladie grave incurable accueillies en Maison d'accueil spécialisée. Dans l'objectif de problématiser la rencontre entre deux champs professionnels, celui des soins palliatifs et celui du handicap, nous proposons quelques repères nécessaires pour penser et construire la pratique professionnelle dans ce contexte.
OBJECTIVE: The objective of this paper is to explore the ethical and legal validity of advance directives that request the voluntary stopping of eating and drinking against a backdrop of late-stage dementia.
METHOD: Doctrinal research and analysis of primary and secondary materials including Australian legislation, Australian case law and journal articles was undertaken.
RESULTS: There is legal uncertainty in Australia around whether an advance directive to voluntarily stop eating and drinking will be followed should the adult become incompetent.
CONCLUSION: Voluntary stopping of eating and drinking should be viewed in law as a form of "treatment" that competent adults can nominate in advance directives, thereby providing dementia patients with the opportunity to choose in advance, if they wish, to end their life legally, with dignity and comfort, and in a manner that does not implicate others in criminal behaviour such as assisted suicide, acceleration of death or euthanasia.
Context: Programs identifying patients needing palliative care and promoting advance care planning (ACP) are rare in Asia.
Objectives: This interventional cohort study aimed to identify hospitalized patients with palliative care needs using a validated Palliative Care Screening Tool (PCST), examine the ability of the PCST to predict mortality, and explore effects of a pragmatic ACP program targeted by PCST on the utilisation of life-sustaining treatment during the last three months of life.
Methods: In this prospective study, we used PCST to evaluate patients’ palliative care needs between 2015 and 2016 and followed patients for 3 months. ACP with advance directives (AD) were systematically offered to all patients with PCST score =4.
Results: Of 47,153 hospitalized patients, 10.4% had PCST score =4. During follow-up, 2,121 individuals died within three months of palliative care screening: 1,225 (25.0%) with PCST score =4 and 896 (2.1%) with PCST score <4. After controlling for co-variates, PCST score =4 was significantly associated with a higher mortality within 3 months of screening (adjusted odds ratio [AOR], 6.86; 95% confident interval [CI], 6.16-7.63). Moreover, ACP consultation (AOR=0.78, 95%CI: (0.66-0.92) and AD completion (AOR=0.49, 95%CI: 0.36-0.65) were associated with a lower likelihood of receiving life-sustaining treatments during the last 3 months of life.
Conclusions: We demonstrated the feasibility of implementing a comprehensive palliative care program to identify patients with palliative care needs and promote ACP and AD in East Asia. ACP consultation and AD completion were associated with reduced utilization of life-sustaining treatments during the last 3 months of life.
AIM: To describe general practitioners' (GPs) perspectives on end-of-life care of nursing home residents.
METHODS: We carried out a cross-sectional study. A questionnaire was sent to a random sample of 1121 GPs in the German federal states of Bremen and Lower Saxony in 2018. Data were compared between GPs with a qualification in palliative medicine and those without such qualifications, and multivariable logistic regression was performed.
RESULTS: Overall, 375 questionnaires were returned (response rate 34%). The majority of GPs (71%) agreed that nursing home residents are treated too often in hospitals at the end of life, and more than half rated end-of-life care in nursing homes as "rather poor" (54%). For both questions, GPs with a qualification in palliative medicine showed higher agreements. In the multivariable analysis, a prior qualification in palliative medicine was also strongly associated with rating end-of-life care as "rather poor" (OR 1.89, 95% CI 1.10-3.23). Respondents cited higher staffing ratios and better trained nursing staff as the most important measures to improve end-of-life care. Furthermore, it was estimated that just 37% of residents have an advance directive, with only one-third including valid information on end-of-life hospitalizations.
CONCLUSIONS: This study showed that GPs tend to be critical regarding end-of-life care in nursing homes. To improve end-of-life care, better training in palliative care for nursing staff and GPs might be warranted. In addition, advance care planning can help to ensure that residents' wishes are respected.
During a mental health crisis, patients with psychiatric diagnoses tend to suffer a loss of cognitive function and decision-making faculties. Psychiatric advance directives (PADs) are designed to ensure that these patients maintain some level of autonomy over their medical decisions even if they cannot retain decision-making power during a mental health crisis. This article explores the regulatory landscape surrouding PADs, including their legal foundation and barriers to their effective use in practice.
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BACKGROUND: In recent decades, issues related to end-of-life care and advance care planning (ACP) have attracted popular attention. Advance care planning has been broadly discussed as one of the potential solutions to protect a patient's rights, autonomy, and dignity at the end of life. To better understand publishing on this topic, we conducted this study to demonstrate the worldwide research productivity, trends, and citations of ACP in the past 3 decades by bibliometric analysis.
METHODS: Articles published on ACP were retrieved from the Web of Science Core Collection database, and the subject terms included "advance directive," or "advance care planning."
RESULTS: Overall, 2126 publications on ACP were retrieved until January 22, 2019. North America, Western Europe, and Australia were the most productive regions. The top 15 countries published 95.9% of the total number of articles. The United States accounted for approximately three-fifths (61.0%) of all publications. When adjusted for population size, Australia had the highest number of articles per million persons (6.64), followed by the Netherlands (6.14) and Belgium (4.61). The most productive authors were Sudore (n = 37), Deliens (n = 29), and Green (n = 24).
CONCLUSIONS: The current study revealed that research in terms of publications on ACP has rapidly increased over the past 3 decades. Developed countries, especially the United States, were more concerned with the ACP research field than developing countries were.
With the growing number of individuals with Autism Spectrum Disorder (ASD) reaching the age of consent, health-care providers must be prepared to bridge gaps in their knowledge of ASD. This is especially true for clinicians who may have to determine if a person with ASD has the capacity to engage in end-of-life decision making, complete advance directives, or act as a surrogate decision maker for someone else. This paper provides an overview of the unique characteristics of autism as related to the communication, cognitive processing, and the capability to participate in advance care planning and, when acting as a surrogate decision maker, to consider the values and preferences of others. In addition, we examine the roles and responsibilities of clinician as facilitator of shared health-care decision making communication with the individual who has autism. Consideration is given to determining capacity, planning for atypical responses, the impact or lack of influence of the framing effect, and strategies for presenting information. Finally, we will offer health-care providers information and examples for adapting their existing end-of-life decision-making tools and conversation guides to meet the communication needs of persons with ASD.
We undertook a retrospective review of a subset of expired patients at our community hospital to evaluate end-of-life care patterns and the use of advanced care planning tools among patients who died in the hospital. These 162 expired patients fell into 1 of the 3 diagnosis-related groups of cardiac, respiratory, or infectious disease. Seventy-nine percent of patients arrived to the hospital with no requested limitations in the extent of resuscitative efforts, even though 98% of all patients had major or extreme severity of illness and risk of mortality scores. The presence of an advance directive requesting a limitation of resuscitative efforts modestly impacted resources and procedures, even though utilization in this group was high. Among the 21% of patients with preexisting limits, 21% requested more aggressive support during their course. Critical care unit utilization was seen in 69% of patients for a median of 48 hours. A request for palliative care consultation was received in 44% of patients but only occurred in 30% of all patients due to the short period between the consultation request and patient death (median 37 hours). Among this group of dying patients, engagement of the palliative care team came too late in the course of many patients, suggesting that automated tools embedded in the electronic medical record might be helpful in the identification of appropriate patients earlier.
Dans le cadre de la prise en charge des personnes en fin de vie, la mise en application des dispositions relatives aux directives anticipées reste une difficulté sur le terrain. Une équipe soignante de Saône-et-Loire a mené un travail de recherche sur cette question et ainsi éclairé plusieurs freins, dont une : méconnaissance de la loi et un, manque d’information du public. Des pistes de réflexion prolongent ces travaux.
Background: Advance directives have been established as a legal document that ensures patients' wishes are followed if/when they cannot make medical decisions for themselves. The concept, advance directive, is rooted in the ethical principle of patient's autonomy. New York State recognizes three types of advance directives: New York State Health Care Proxy, Living Wills, and Do Not Resuscitate (DNR) order. A common misnomer in healthcare is the idea that advance directives are for the elderly or patients with terminal illness. As per New York State statutes, everyone older than 18-years-old should have an advance directive to avoid conflicts in times of crisis. It has been shown that most patients believe it is their physician's responsibility to initiate an advance directive discussion and residents are at the forefront of most health facilities.
Objective: To assess the knowledge and attitude of internal medicine residents towards advance directive and to improve residents' skills and confidence on advance directive discussion.
Design: We carried out a prospective study to assess the knowledge and attitude of the internal medicine residents towards advance directive to validate the need to implement didactic sessions and simulations. Results: Fifty out of the 75 internal medicine residents of Harlem Hospital Center participated in the study. Most of the responders indicated that they lacked sufficient knowledge in advance directive discussion and indicated that they were interested in didactic sessions and simulations related to how to help patients with advance directives.
Conclusion: Our study showed that most of the residents lacked sufficient knowledge in advance directives discussions and the importance of its incorporation into residency training education.
Background: Patients receiving palliative care often interact with a variety of health care providers across various settings. While patients may experience good care from these services, the connection between these can be disjointed as care providers may work siloed from each other. This is particularly true in out-of-hospital and hospital emergency settings, where providers have no prior knowledge of the patient, particularly their advanced directives (ADs) and goals of care. In the Emergency Department or when paramedics respond to the home, ADs are further challenged by issues of cnt, contextual relevance, and accessibility.larity of conte
Objectives: (1) What content should be in AD for medical emergencies, and (2) what would ensure the AD is accessible in times of crisis?
Design: Phase 1 involved a review of existing AD and published literature to generate a list of candidate elements. Phase 2 presented these in an online survey using modified Delphi method to paramedics, emergency nurses, and physicians. During phase 3, a focus group with palliative and emergency care providers and information technology experts was held regarding current accessibility of AD and a vision for improvement. The detailed focus group notes were coded using inductive analysis.
Results: Fifty-five candidate elements were provided for the Delphi. After three rounds, 36 panelists achieved consensus on 46 elements. Participation was greater than 80% in all rounds. From the focus group on access, six themes emerged; (1) imprecise language, (2) mismatch of protocols, (3) lack of understanding by patients/families, (4) lack of AD, (5) difficulty accessing AD, and (6) opportunities: database, education.
Conclusion: This project makes recommendations to improve palliative care in emergency or crisis situations and facilitate care consistent with patient's goals: (1) a consensus-based template for AD content; and (2) development of a centralized database. These findings served as the e iding Palliative Care at Home" program.
BACKGROUND: Primary care clinics need sustainable, population-based approaches to engage patients in advance care planning (ACP). Patient portal-based ACP tools may provide an option for patient engagement.
OBJECTIVE: To increase ACP outcomes by engaging older adults through portal-based ACP tools, including an electronic Medical Durable Power of Attorney (MDPOA) form.
METHODS: Geriatric clinic pilot of a multi-modal population-based outreach strategy for portal-based ACP tools. Outreach was to patients (n = 105) who were 65 years and older with an active portal account, no cognitive impairment, and no MDPOA on file. Patients received a motivational message via the portal and, if not read within 2 weeks, a mailed postcard about the portal-based ACP tools. Primary outcome was composite of any ACP action at 1-year including 1) new advance directive (AD) in the electronic health record, 2) use of portal-based ACP tools, or 3) documented ACP discussion with a provider.
RESULTS: Sixty-five older adults read the electronic message at 12 months. Seventeen (16%) engaged in at least 1 ACP action. Fourteen of 17 engaged by adding an AD to their record. More patients completed an AD on article or brought a previously completed AD to clinic, compared with choosing to complete an electronic MDPOA via the portal.
CONCLUSIONS: Brief motivational messages about ACP via a patient portal is feasible and may increase ACP outcomes for older adults in primary care. Future studies should evaluate population-based portal outreach strategies in combination with team-based workflows to enhance patient engagement in ACP.
OBJECTIVE: Advance care planning (ACP) assists people to identify their goals, values and treatment preferences for future care. Ideally, preferences are documented in an advance care directive (ACD) and used by doctors to guide medical decision-making should the patient subsequently lose their decision-making capacity. However, studies demonstrate that ACDs are not always adhered to by doctors in clinical practice. We aim to describe the attitudes and perspectives of doctors regarding ACD adherence and the utility of ACDs in clinical practice.
DESIGN: Face-to-face semistructured interviews were conducted using three case-based vignettes to explore doctors' decision-making and attitudes towards ACDs. Transcripts were analysed using a thematic analysis.
SETTING: Doctors from a variety of medical specialties and with varying experience levels were recruited from a large tertiary hospital in Melbourne, Australia.
PARTICIPANTS: A total of 21 doctors were interviewed, 48% female (10/21). Most (19/21) reported having experience using ACDs.
RESULTS: Four themes were identified: aligning with patient preferences (avoiding unwanted care, prioritising autonomy and anticipating family opposition), advocating best interests (defining futile care, relying on clinical judgement, rejecting unreasonable decisions and disregarding legal consequences), establishing validity (doubting rigour of the decision-making process, questioning patients' ability to understand treatment decisions, distrusting outdated preferences and seeking confirmation) and translating written preferences into practice (contextualising patient preferences, applying subjective terminology and prioritising emergency medical treatment).
CONCLUSIONS: ACDs provide doctors with opportunities to align patient preferences with treatment and uphold patient autonomy. However, doctors experience decisional conflict when attempting to adhere to ACDs in practice, especially when they believe that adhering to the ACD is not in the patients' best interests, or if they doubt the validity of the ACD. Future ACP programmes should consider approaches to improve the validity and applicability of ACDs. In addition, there is a need for ethical and legal education to support doctors' knowledge and confidence in ACP and enacting ACDs.
This article examines the evolution of advance care planning (ACP) in Singapore through the development of a less-formal, communications-based model - the Living Matters program - and its experience with local cultural and community responses to the process and its outcomes. Living Matters is, in practice, arguably a communitarian approach to ACP. The article then examines the challenges Living Matters poses to the overarching legal framework for ACP and suggests improvements to the proxy decision-making framework under the Mental Capacity Act (Singapore, cap 177A, 2010 rev ed), offering more flexible legal tools for ACP, and more regulatory support for the means to implement ACP outcomes effectively.
Contrary to expectations of joint decision-making, a substantial minority of older married couples report only one spouse possessing an advance directive. Using Health and Retirement Study data, the authors examined advance directive discordance among heterosexual married couples in which at least one spouse had completed an advance directive. It was predicted that spouses who differed in age, self-rated health, or race/ethnicity would be more apt to adopt individualistic as opposed to relational motivational stances, resulting in higher odds of nonmatching advance directive status. Heterogamy did not account for discordance, but couples in which one or both spouses attended some college were more likely to report advance directive concordance. In contrast, couples in which one or both spouses were non-White were more likely to display advance directive discordance. Study results raise concerns about the effectiveness and reach of advance care planning promotion efforts among low-education and non-White older married adults.
BACKGROUND: In the variegated legislative framework on advance directives, the first specific regulation in Italy on this issue came into force only in 2018.
RESEARCH OBJECTIVE: This qualitative study aimed to investigate the implications of the new Italian law on advance directives in clinical practice from the perspective of those who deal with this delicate ethical issue on an everyday basis, that is, Italian healthcare professionals.
RESEARCH DESIGN: A qualitative research design using semi-structured audio-recorded interviews was adopted. The data collection and analysis were performed according to the Grounded Theory approach.
PARTICIPANTS: Nineteen healthcare professionals (16 nurses, 3 physicians) working in a palliative care unit of a research and clinical institute in Italy.
ETHICAL CONSIDERATIONS: The study is part of the WeDistress HELL Project (WEllness and DISTRESS in HEalth care professionals dealing with end of Life and bioethicaL issues) approved by the Ethical Committee of ICS Maugeri - Institute of Pavia (Italy).
FINDINGS: The authors identified a main overall category, 'Pros and Cons of the Italian law on advance directives', composed of six constituent categories: Positive welcome, Self-determination and protection, Prompts for future betterment, Uncertainties, Lack of knowledge, and Neutrality and no suggestions.
DISCUSSION: The Italian law n. 219/2017 on advance directives was seen as a legal instrument possessing both strengths and weaknesses, but able to guarantee the patient's self-determination and support healthcare professionals in providing care according to patients' wishes.
CONCLUSION: An understanding of the healthcare providers' perspective may support the discussion on advance directives and bridge the gaps that currently persist in handling ethical issues.
The objective of this study was to identify the variables that influence physicians to implement Advance Directives and assess their impact on end-of-life care. It is a narrative literature review of 25 articles published between 1997 and 2018, in the following databases: CAPES, EBSCOhost, BDTD, VHL, Google Scholar, MEDLINE®/PubMed. The keywords utilized were: "advance directives", "living wills", "physicians", "attitude", "decision making", "advance care planning". The main factors that influenced physicians to implemente the directives were patients prognosis, medical paternalism, and patients understanding of their medical condition. Respect for autonomy, lack of knowledge and experience with directives, legal concerns, family influence, cultural and religious factors also contributed to medical decision. Most studies (86%) showed that having a directive led to lower rates of invasive interventions in the last days of patient´s life. Physicians were interested in respecting their patients' autonomy and agreed that having an advance directive helped in the decision-making process; however, they stated other factors were also taken into account, mainly prognosis and reversibility conditions. Having directives contributed to reducing the use of life support therapies and adoption of comfort measures.
The Ethics Subcommittee of AMDA-The Society for Post-Acute and Long-Term Care Medicine ("The Society") presents arguments for and against Stopping Eating and Drinking by Advance Directives (SED by AD). SED by AD is a type of advance directive in which a proxy is instructed to stop offering food and fluids to a person when they reach a certain stage of dementia. Although most conversations regarding SED by AD focus on patient autonomy and the right to determine one's care, we propose that the ethical principle of justice-the obligation to treat all individuals equally regardless of race, gender, and physical or cognitive ability-is the decisive principle in this controversy. We also suggest that implementing SED by AD can violate a physician's obligation to beneficence and nonmaleficence. On the other hand, we identify with the families of our patients who see the refusal to follow an advance directive as an injustice of the highest order. In the end, The Society is convinced that no choice can be made here without practicing an injustice: if one refuses to implement SED by AD, one violates the autonomy of the person who drew up the advance directive. If, on the other hand, one refuses food and fluid to a resident who still accepts food, one risks practicing an injustice against that person as they are now. Recognizing that we have the greatest responsibility to our patients as they present to us in the residential setting, The Society recommends against implementing SED by AD in residents who still accept food and fluids, implementing instead, a policy of comfort feeding for those with advanced dementia.
BACKGROUND: "End of life" is a difficult topic of conversation in East Asian cultures, even among patients and doctors who share a good rapport. In 2016, the Hospice, Palliative Care, and Life-Sustaining Treatment Decision-Making Act, which took the form of "Physician Orders for Life-Sustaining Treatment," was introduced in South Korea. This study was conducted to investigate the completion rate of Physician Orders for Life-Sustaining Treatment in patients with advanced cancer on the active recommendation of physicians, as well as patients' general attitudes toward end-of-life care.
METHODS: We conducted a preliminary, cross-sectional descriptive survey on patients with advanced cancer. A total of 101 patients with advanced solid cancer agreed to participate in the study. The primary endpoint was the rate of completion of Physician Orders for Life-Sustaining Treatment based on a doctor's suggestion. Written interviews were conducted to understand the perceptions and factors influencing patients' decisions.
RESULTS: Of the 101 patients, 72 (71.3%) agreed to prepare Physician Orders for Life-Sustaining Treatment. Patients who had an educational level of high school or higher were more likely to agree to complete Physician Orders for Life-Sustaining Treatment documentation as compared to the lower educational status group. More than half of the respondents who completed Physician Orders for Life-Sustaining Treatment documentation reported that they had more than a fair understanding of "life-sustaining care" or "Physician Orders for Life-Sustaining Treatment." Participants' reasons for Physician Orders for Life-Sustaining Treatment completion were diverse.
CONCLUSIONS: We found that highly educated patients, who understood the concept behind the policy well, tended to accept Physician Orders for Life-Sustaining Treatment without hesitation. Better education, information shared through the media, and conversations with health care providers might improve understanding of Physician Orders for Life-Sustaining Treatment in patients with cancer.
Background: Life expectancy in patients with end-stage kidney disease treated with hemodialysis (HD) is limited, and as such, the presence of an advanced care directive (ACD) may improve the quality of death as experienced for patients and families. Strategies to discuss and implement ACDs are limited with little being known about the status of Do Not Resuscitate (DNR) orders in the Canadian HD population.
Objectives: Using data from the Dialysis Outcomes and Practice Patterns Study (DOPPS), we set out to (1) examine the variability in DNR orders across Canada and its largest province, Ontario and (2) identify clinical and functional status measures associated with a DNR order.
Design: We conducted a retrospective cohort study using data from the DOPPS Canada Phase 4 to 6 from 2009 to 2017.
Setting: DOPPS facilities in Canada.
Patients: All adults (>18 years) who initiated chronic HD with a documented ACD were included.
Measurements: ACD and DNR orders.
Methods: Descriptive statistics were compared for baseline characteristics (demographics, comorbidities, medications, facility characteristics, and patient functional status) and DNR status. The crude proportion of patients per facility with a DNR order was calculated across Canada and Ontario. Functional status was determined by activities of daily living and components of the Kidney Disease Quality of Life (KDQOL)-validated questionnaire. We used generalized estimating equations (GEEs) to create sequential multivariable models (demographics, comorbidities, and functional status) of variables associated with DNR status.
Results: A total of 1556 (96% of total) patients treated with HD had a documented ACD and were included. A total of 10% of patients had a DNR order. The crude variation of DNR status differed considerably across facilities within Canada, between Ontario and non-Ontario, and within Ontario (interprovince variation = 6.3%-17.1%, Ontario vs non-Ontario = 8.2% vs 11.7%, intraprovincial variation [Ontario] = 1%-26%). Patients with a DNR order were more commonly older, white, with cardiac comorbidities, with less or shorter predialysis care compared with those without a DNR order. Patients with a DNR order reported lower energy, more difficulty with transfers, meal preparation, household tasks, and financial management. In a multivariate model, age, cardiac disease, stroke, dialysis duration, and intradialytic weight gain were associated with DNR status.
Limitations: Relatively small number of events or measures in certain categories.
Conclusions: A large inter- and intraprovincial (Ontario) variation was observed regarding DNR orders across Canada highlighting areas for potential quality improvement. While functional status did not appear to have a bearing on the presence of a DNR order, the presence of various comorbidities was associated with the presence of a DNR order.