Objective: To determine the level of palliative care involvement before and after medical assistance in dying (MAID) requests, and to compare the differences between those who completed MAID and those who requested but did not complete MAID.
Design: Retrospective chart review.
Setting: The Ottawa Hospital (TOH) in Ontario.
Participants: Ninety-seven patients who requested MAID at TOH between February 6, 2016, and June 30, 2017.
Main outcome measures: Completion of MAID.
Results: Eighty-four patients were included in the study. Fifty patients (59.5%) completed MAID. The most common reasons for not completing MAID were death before completion of the required assessments (47.0%), ineligibility (26.5%), and loss of capacity (14.7%). The most common diagnoses were cancer (72.6%) and neurologic disease (11.9%). The most frequent reasons for requesting MAID were physical suffering (77.4%), loss of autonomy (36.9%), and poor quality of life (27.4%). Patients who completed MAID in this study were more likely to report physical suffering as the reason for their request than those who did not complete MAID (84.0% vs 67.6%; P = .08), yet only 23.8% of all patients requesting MAID had an Edmonton Symptom Assessment Scale completed. Before MAID request, 27.4% of patients had a community palliative care physician and 59.5% had palliative care involvement in any setting. The TOH palliative care team was involved in 46.4% of patients who requested MAID.
Conclusion: There is still inadequate provision of palliative care for those requesting MAID. Guidelines, legislation, and guidance are needed to help physicians ensure patients are aware of and understand the benefits of palliative care in end-of-life decisions. However, the involvement of palliative care with patients who completed MAID was similar to those who did not complete MAID. Multicentre studies are needed to further explore the MAID process and clarify the role of palliative care in that process.
In the Netherlands during the past decade, a growing number of people with dementia (PWDs) requested euthanasia, and each year more of such requests were granted. We aimed to get quantitative insights in problems and needs general practitioners (GPs) have when confronted with a euthanasia request by a person with dementia (PWD). A concept survey was composed. Expert validity of the survey was achieved through pilot testing A postal survey was sent to a random sample of 900 Dutch GPs, regardless their opinion on or practical experience with euthanasia. Collected data were analysed with descriptive statistics. Of 894 GPs, 423 (47.3%) completed the survey, of whom 176 (41.6%) had experience with euthanasia requests from PWDs. Emotional burden was reported most frequently (86; 52.8%), as well as feeling uncertain about the mental competence of the PWD (77; 47.2%), pressure by relatives (70; 42.9%) or the PWD (56; 34.4%), and uncertainty about handling advance euthanasia directives (AEDs) (43; 26.4%). GPs would appreciate more support by a SCEN physician (an independent physician for support, information and formal consultation around euthanasia). (291; 68.8%), a geriatric consultation team (185; 43.7%), the end-of-life clinic (184; 43.5%), or a palliative care consultation team (179; 42.3%). Surprisingly the need for moral deliberation was hardly mentioned. The reported burden and the rise in numbers and complexity of euthanasia requests from PWDs warrants primary care support by easier access to colleagues with expertise and training on end of life care needs of patients with dementia and their caregivers.
Medical aid in dying (MAID) is a practice in which a physician provides a competent adult with a terminal illness with a prescription for a lethal dose of a drug at the request of the patient, which the patient intends to use to end his or her life. MAID currently is legal in nine states and the District of Columbia. The most common concerns leading to requests for MAID include loss of autonomy, loss of ability to participate in activities that make life enjoyable, and loss of dignity. MAID remains controversial. Physicians can choose not to participate in MAID and many are prohibited from participating by their employers. Family physicians should have the knowledge and skills to respond to inquiries about MAID in a compassionate, patient-centered manner. Clinicians should be familiar with the legal status of MAID in the state in which they practice, understand eligibility requirements for participation, have access to resources to support patients and clinicians, and be able to apply various communication strategies to MAID discussions. A thoughtful exploration of what led the patient to inquire about MAID will allow the physician to better understand and respond to patient concerns regarding the final months of life.
BACKGROUND: Euthanasia has been regulated by law under strict conditions in the Netherlands since 2002. Since then the number of euthanasia cases has constantly increased, and increased exponentially for patients with dementia (PWD). The number of euthanasia requests by such patients is even higher. Recently, an interview study showed that physicians who are confronted with a PWD's euthanasia request experience problems with communication, pressure from relatives, patients, and society, workload, interpretation of the law, and ethical considerations. Moreover, if honoured, the physician and patient may interpret the right moment for euthanasia differently.
AIM: To identify ways of supporting GPs confronted with a PWD's euthanasia request.
DESIGN AND SETTING: Two expert nominal group meetings were organised with Dutch care physicians for older people, GPs, legal experts, a healthcare chaplain, a palliative care consultant, and a psychologist.
METHOD: A total of 15 experts participated in the meetings. Both meetings were audio-recorded, transcribed verbatim, and analysed using thematic analysis.
RESULTS: Four themes emerged from the meetings: support provided by healthcare professionals, influencing public opinion, educational activities, and managing time and work pressure. The need for support was considered highest for GPs for all of these themes.
CONCLUSION: Consensus was reached with the help of experts on support needs for GPs confronted with euthanasia requests from PWD. A concise and clear explanation of the law is strongly desired. Changing public opinion seems the most challenging and a long-term aim. Communication training for finding the right balance between the physician's professional responsibility and the patient's autonomy should be made available, as a short-term aim.
NICE (National Institute for Health & Care Excellence) guidance recommends that healthcare professionals with expertise in palliative care should be an integral part of the multidisciplinary team in managing patients with motor neuron disease (MND). Those in the poorest prognostic group may benefit from early referral to help manage rapidly progressive symptoms, psychological distress and offer additional support with complex decision-making and early robust advance care planning. Patients frequently develop dysphagia and gastrostomy feeding can be used to prolong survival and improve quality of life. As the disease progresses patients may request withdrawal of life-sustaining treatment such as gastrostomy feeding; however, a literature search found no evidence or guidance on how best to facilitate this. We present the case of a patient with MND admitted to the hospice inpatient unit requesting withdrawal of gastrostomy feeding, outline the challenges and need for further consensus guidelines to inform practice.
BACKGROUND: Interest in the topic of termination of life has been growing for 2 decades. After legalisation of active euthanasia and assisted suicide (EAS) in the Netherlands in 2002, movements to implement similar laws started in other European countries. However, many people objected to legalisation on the basis of the experiences in the Netherlands and as a matter of principal.
METHODS: This selected and focussed review presents the theoretical discussions about EAS and describes the respective parliamentary discussions in Germany and the data and experiences in the Netherlands. It also considers people with mental disorders in the context of termination-of-life services.
RESULTS: So far, only a few European countries have introduced legislation on EAS. Legalisation of EAS in the Netherlands resulted in an unexpectedly large increase in cases. The number of people with mental disorders who terminate their lives on request remains low.
CONCLUSIONS: Experience from the Netherlands shows that widening criteria for EAS has problematic consequences. KEY POINTS Termination of life on request, which a subgroup of people support, is a matter of ongoing debate. Because of several problematic aspects, including ethical considerations, only a few countries in the world allow active euthanasia or assisted suicide. Even if euthanasia is well regulated, legalising it can have problematic consequences that are difficult to control, such as an unwanted excessive increase in euthanasia cases. The well-documented experiences with the euthanasia law in the Netherlands serve as an example of what is to be expected when euthanasia is legalised. We need to pay close attention to the relationship between suicide and suicide prevention on the one hand and euthanasia acts and promotion of euthanasia on the other. Further ethical, psychological and legal research is needed. In particular, the role of palliative medicine in societies' approach to end-of-life care must be explored in much more detail.
BACKGROUND: Since its legalisation in 2002, the number of times euthanasia has been carried out in response to requests from adults with psychiatric conditions (APC) has continued to increase. However, little is known about why and how psychiatrists become engaged in the assessment of such euthanasia requests.
METHODS: A cross-sectional survey study was conducted between November 2018 and April 2019 of 499 psychiatrists affiliated with the Flemish Psychiatry Association. Chi square/Fisher's exact tests were performed to examine if, and to what extent, psychiatrists' backgrounds relate to their concrete experiences. The answers to the open question regarding motives for (non-) engagement were thematically coded.
RESULTS: Two hundred one psychiatrists participated, a response rate of 40%. During their careers, 80% of those responding have been confronted with at least one euthanasia request from an APC patient and 73% have become involved in the assessment procedure. Their engagement was limited to the roles of: referring physician (in 44% of the psychiatrists), attending physician (30%), legally required 'advising physician' (22%), and physician participating in the actual administration of the lethal drugs (5%). Within the most recent 12 months of practice, 61% of the respondents have been actively engaged in a euthanasia assessment procedure and 9% have refused at least once to be actively engaged due to their own conscientious objections and/or the complexity of the assessment. The main motive for psychiatrists to engage in euthanasia is the patient's fundamental right in Belgian law to ask for euthanasia and the psychiatrist's duty to respect that. The perception that they were sufficiently competent to engage in a euthanasia procedure was greater in psychiatrists who have already had concrete experience in the procedure.
CONCLUSIONS: Although the majority of psychiatrists have been confronted with euthanasia requests from their APC patients, their engagement is often limited to referring the request to a colleague physician for further assessment. More research is needed to identify the determinants of a psychiatrist's engagement in euthanasia for their APC patients and to discover the consequences of their non-, or their restricted or full engagement, on both the psychotherapeutic relationship and the course of the euthanasia request.
Background: To understand the status of residents’ awareness of and demand for hospice care services in Hangzhou and to provide a reference for promoting the formulation of hospice care-related policies in China.
Methods: A small cross-sectional survey of 519 adults aged over 40 years old living in the rural-urban fringe and urban area of Xihu District, Hangzhou City, was conducted using convenience sampling and a self-designed questionnaire. The measures assessed awareness of hospice care (13-item scale), attitudes towards life support therapy (3-item scale), and demand for hospice care services (9-item scale).
Results: The rate of awareness of hospice care among community residents was 50.30%. A total of 51.0% of residents wanted only comfortable life-sustaining treatment at the end of their lives. The acceptance of hospice care was positively correlated with the degree of understanding (x2 = 18.382, P = 0.001), and residents in the urban area were more likely to prefer hospice care than residents in the urban-rural fringe (x2 = 7.186, P = 0.028). Elderly residents showed a stronger tendency to prefer comfortable life support therapy (x2 = 12.988, P < 0.001). A total of 83.04% of the residents accepted the current necessity for hospice care to be provided in medical institutions. The preferred locations were professional hospice care institutions or general hospitals. A total of 93.64% of the residents agreed that the number of beds in hospice care wards should not exceed 2. In addition, the residents could afford part of the out-of-pocket expenses for hospice care services, with the ability to pay under 200 yuan per day, and the improvement of facilities was expected.
Conclusions: To improve public awareness and acceptance of hospice care and promote healthy development in China, it is necessary to promote hospice care education for everyone.
The coronavirus disease 2019 (COVID-19) pandemic presents unique challenges to those who work with the seriously ill population, including both health care providers and the family caregivers providing unpaid care. We rely on this lay workforce as health care routinely transitions care to the home, and now more than ever, we are depending on them in the current pandemic. As palliative care and other health care providers become overwhelmed with patients critically ill with COVID-19, and routine care becomes delayed, we have a charge to recognize and work with family caregivers. Our commentary provides rationale for the need to focus on family caregivers and key considerations for how to include them in pandemic clinical decision making.
CONTEXT: Patients with cancer face symptoms due to disease and treatment, and pain is common and complex. The opioid crisis may complicate patients' and clinicians' experiences of managing pain in cancer care.
OBJECTIVES: In our study of perceptions and experiences with palliative care at an outpatient cancer center, we examined communication around symptom management throughout cancer care, and pain and its management emerged as particularly salient. The objective of this paper is to describe, from the perspectives of patients, caregivers, and oncology healthcare professionals, the role of palliative care in navigating the complicated dynamics of pain management amidst the opioid crisis.
METHODS: A qualitative descriptive study with grounded theory components was designed to investigate experiences with and perceptions of specialist palliative care and symptom management, including pain. Interviews were audio-recorded and transcribed, and focused coding identified themes related to pain and pain management from all three perspectives.
RESULTS: 44 patients, caregivers, and non-palliative care healthcare professionals completed interviews. Patients with cancer and their caregivers had many concerns about pain management and were specifically concerned about opioid use and stigma. For patients, palliative care improved pain management and helped to de-stigmatize appropriate pain management. Oncology clinicians reported that partnering with palliative care facilitated complex pain management and also provided moral support around difficult opioid recommendations for patients.
CONCLUSION: Palliative care offers the potential to uniquely support both patients and other oncology professionals in optimally navigating the complexity around pain management for cancer care in the midst of the opioid crisis.
OBJECTIVE: To measure the associations between newly initiated palliative care in the last six months of life, healthcare use, and location of death in adults dying from non-cancer illness, and to compare these associations with those in adults who die from cancer at a population level.
DESIGN: Population based matched cohort study.
SETTING: Ontario, Canada between 2010 and 2015.
PARTICIPANTS: 113 540 adults dying from cancer and non-cancer illness who were given newly initiated physician delivered palliative care in the last six months of life administered across all healthcare settings. Linked health administrative data were used to directly match patients on cause of death, hospital frailty risk score, presence of metastatic cancer, residential location (according to 1 of 14 local health integration networks that organise all healthcare services in Ontario), and a propensity score to receive palliative care that was derived by using age and sex.
MAIN OUTCOME MEASURES: Rates of emergency department visits, admissions to hospital, and admissions to the intensive care unit, and odds of death at home versus in hospital after first palliative care visit, adjusted for patient characteristics (such as age, sex, and comorbidities).
RESULTS: In patients dying from non-cancer illness related to chronic organ failure (such as heart failure, cirrhosis, and stroke), palliative care was associated with reduced rates of emergency department visits (crude rate 1.9 (standard deviation 6.2) v 2.9 (8.7) per person year; adjusted rate ratio 0.88, 95% confidence interval 0.85 to 0.91), admissions to hospital (crude rate 6.1 (standard deviation 10.2) v 8.7 (12.6) per person year; adjusted rate ratio 0.88, 95% confidence interval 0.86 to 0.91), and admissions to the intensive care unit (crude rate 1.4 (standard deviation 5.9) v 2.9 (8.7) per person year; adjusted rate ratio 0.59, 95% confidence interval 0.56 to 0.62) compared with those who did not receive palliative care. Additionally increased odds of dying at home or in a nursing home compared with dying in hospital were found in these patients (n=6936 (49.5%) v n=9526 (39.6%); adjusted odds ratio 1.67, 95% confidence interval 1.60 to 1.74). Overall, in patients dying from dementia, palliative care was associated with increased rates of emergency department visits (crude rate 1.2 (standard deviation 4.9) v 1.3 (5.5) per person year; adjusted rate ratio 1.06, 95% confidence interval 1.01 to 1.12) and admissions to hospital (crude rate 3.6 (standard deviation 8.2) v 2.8 (7.8) per person year; adjusted rate ratio 1.33, 95% confidence interval 1.27 to 1.39), and reduced odds of dying at home or in a nursing home (n=6667 (72.1%) v n=13 384 (83.5%); adjusted odds ratio 0.68, 95% confidence interval 0.64 to 0.73). However, these rates differed depending on whether patients dying with dementia lived in the community or in a nursing home. No association was found between healthcare use and palliative care for patients dying from dementia who lived in the community, and these patients had increased odds of dying at home.
CONCLUSIONS: These findings highlight the potential benefits of palliative care in some non-cancer illnesses. Increasing access to palliative care through sustained investment in physician training and current models of collaborative palliative care could improve end-of-life care, which might have important implications for health policy.
This study describes the characteristics of—and the counseling received by—counselees who passed away through self-ingesting self-collected lethal medication after receiving demedicalised assistance in suicide. We analyzed registration forms filled in by counselors working with Foundation De Einder about 273 counselees who passed away from 2011 to 2015. The majority of these counselees had a serious disease and physical or psychiatric suffering. Half of them had requested physician assistance in dying. This shows that patients with a denied request for physician assistance in dying can persist in their wish to end life. This also shows that not all people with an underlying medical disease request for physician assistance in dying. Physicians and psychiatrist are often uninvolved in these self-chosen deaths while they could have a valuable role in the process concerning assessing competency, diagnosing diseases, and offering (or referring for) treatment.
Objective: The issue in health is dynamic and full of development, although the more sophisticated medical technology does not mean that all diseases can be cured. In certain cases the patient is dying and tortured. Patients and/or their families sometimes ask to be freed the patient from suffering by ending their lives. This demand for euthanasia is a pro and a contra view in Indonesia, especially in terms of legality.
Method: The type of research in this article is normative research, using a statutory and conceptual approach analyzed and presented descriptively.
Results: The euthanasia is a health act that has legal implications. Although the Criminal Code does not explicitly mention the word euthanasia, however, based on the provisions of the Criminal Code it is stated that taking action to eliminate lives should not be carried out, even if the patient's family wishes. According to the law, social, religious and ethical norms of doctors, euthanasia is not allowed.
Conclusion: The euthanasia in Indonesia cannot be carried out formally because the legal basis governing it still prohibits such actions. This can be seen from the court's decision to reject euthanasia requests. In addition, norms and values are a barrier to the legalization of euthanasia practices in Indonesia.
In 2002, the Belgian Act on euthanasia came into effect, regulating the intentional ending of life by a physician at the patient’s explicit request. Subsequently, the number of reported euthanasia deaths increased every year. Specifically, the proportion of euthanasia deaths in older persons has risen significantly in the last few years. Since the conception of the Euthanasia Act, Belgian physicians have been confronted with challenges concerning euthanasia requests in older persons with polypathology, tiredness of life or dementia. By exploring these issues, this commentary highlights the importance of a meticulous and team-based assessment of the (i) seriousness of the underlying condition, (ii) voluntariness of the request and (iii) decisional capacity of the older person requesting euthanasia.
'Futility' is a contentious term that has eluded clear definition, with proposed descriptions either too strict or too vague to encompass the many facets of medical care. Requests for futile care are often surrogates for requests of a more existential character, covering the whole range of personal, emotional, cultural and spiritual needs. Physicians and other practitioners can use requests for futile care as a valuable opportunity to connect with their patients at a deeper level than the mere biomedical diagnosis. Current debate around Canada's changing regulatory and legal framework highlights challenges in appropriately balancing the benefits and burdens created by requests for futile care.
The Dutch Supreme Court this week ruled that a doctor may act on a previously written euthanasia request and end the life of a patient who, because of advanced dementia, can no longer express their wishes.
Doctors must, however, still adhere to criteria of care for euthanasia practice if they are to avoid prosecution. These, enshrined in the 2002 law, include that the patient is suffering “hopelessly and unbearably” and that the request is “voluntary and well considered,” meaning that the patient must be competent when the request was made.
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All healthcare services strive to achieve the six factors of quality health care - safe, effective, patient-centered, timely, efficient and equitable. Yet multiple structural, process, policy and people factors can combine to result in medical error and patient harm. Measuring the quality of palliative care has many challenges due to its presence across multiple health sectors, variable skill and experience of providers and lack of defined processes for providing services. In Canada there is screening for symptoms and distress in most cancer centers, but not in non-cancer diseases. Screening for distress and disease burden can identify suffering, that when properly addressed, improves quality of life and reduces depression and hopelessness that can lead to requests for hastened death. Our hypothesis is that some requests for hastened death (known as Medical Assistance in Dying or MAiD in Canada) are driven by lack of access to palliative care or lack of quality in the palliative care attempting to address disease burden and distress such that the resulting provision of hastened death is a medical error. The root cause of the error is in the lack of quality palliative care in the previous weeks, months and years of the disease trajectory - a known therapy that the system fails to provide. The evidence for palliative care addressing symptoms and improving quality of life and mood as well as providing caregiver support is established. Early evidence supporting the use of psychotherapeutics in emotional and existential distress is also considered. We present three cases of request for assisted death that could be considered medical error. The paper references preliminary evidence from a review of previous access to palliative care in a limited number of MAiD cases showing that only a minority were identified as having palliative care needs prior to the admission where MAiD was provided. The evidence linking disease burden to hopelessness, depression and hastened death is provided. The many studies revealing the inequity or underservicing of the Canadian population with regards to palliative care are reviewed. We examine a recent framework for palliative care in Canada and point out the need for more aggressive use of standards, process and policies to ensure that Canadians are receiving quality palliative care and that it is equitably accessible to all.
In the last decades, new technologies have improved the survival of patients affected by chronic illnesses. Among them, left ventricular assist device (LVAD) has represented a viable solution for patients with advanced heart failure (HF). Even though the LVAD prolongs life expectancy, patients’ vulnerability generally increases during follow up and patients’ request for the device withdrawal might occur. Such a request raises some ethical concerns in that it directly hastens the patient’s death. Hence, in order to assess the ethical acceptability of LVAD withdrawal, we analyse and examine an ethical argument, widely adopted in the literature, that we call the “descriptive approach”, which consists in giving a definition of life-sustaining treatment to evaluate the ethical acceptability of treatment withdrawal. Focusing attention on LVAD, we show criticisms of this perspective. Finally, we assess every patient’s request of LVAD withdrawal through a prescriptive approach, which finds its roots in the criterion of proportionality.
Medical assistance in dying (MAID) and similar right-to-die laws are becoming increasingly common in jurisdictions across North America and elsewhere. To be eligible for MAID in Canada, requesters must have a serious illness, intolerable suffering, and a reasonably foreseeable natural death. They must also undergo two assessments to confirm eligibility. While a growing body of literature now exists to help clinicians understand and support patients around requests for assisted death, a dearth of literature exists on how best to support those patients who are deemed ineligible. Here, we report on a case series of 3 patients who attempted suicide after being found ineligible for MAID. Two patients were ineligible because they did not appear to have reasonably foreseeable natural death. The third patient was ineligible due to concerns around decisional capacity. All three cases had previous diagnoses of depressive disorders and mild cognitive impairment, and two had histories of suicide attempts. In at-risk patients, we speculate that the period of time surrounding a finding of MAID ineligibility may represent a period of particular vulnerability. Clinicians must be vigilant and prepared for the possibility of heightened risk, including risk of self-harm, following a finding of ineligibility for assisted death.
Physician-assisted death is becoming legal in an increasing number of jurisdictions, but psychiatric patients are often explicitly excluded. However, in some countries, including the Netherlands, physician-assisted death of psychiatric patients is allowed. This Open Forum describes a patient with schizophrenia and symptoms diagnosed as refractory musical hallucinations. The patient requested assistance in dying only to recover after a mandatory second opinion, where his complaints were recognized as intrusive thoughts and treated accordingly. This case is used to reflect on how to deal with uncertainty about physician-assisted death of psychiatric patients and to argue for implementation of a due-diligence procedure, such as the one proposed in the Dutch Psychiatric Association's recent guideline concerning this issue.