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.
Formée en France, je travaille en Belgique depuis 2015. Je suis médecin généraliste, diplômée en soins palliatifs après deux années de formation théorique et de stages. Avant 2015, j'ai travaillé en France en équipe mobile de soins palliatifs intra et extra hospitalière, ainsi qu'en unité de soins palliatifs.
Depuis l'Oregon Death with Dignity Act adopté en 1997, la dépénalisation de l'euthanasie aux Pays-Bas en 2001, puis en Belgique l'année suivante, de plus en plus de personnes demandent l'euthanasie ou en considèrent la possibilité.
Background: Physicians who receive a request for euthanasia or assisted suicide may experience a conflict of duties: the duty to preserve life on the one hand and the duty to relieve suffering on the other hand. Little is known about experiences of physicians with receiving and granting a request for euthanasia or assisted suicide. This study, therefore, aimed to explore the concerns, feelings and pressure experienced by physicians who receive requests for euthanasia or assisted suicide.
Methods: In 2016, a cross-sectional study was conducted. Questionnaires were sent to a random sample of 3000 Dutch physicians. Physicians who had been working in adult patient care in the Netherlands for the last year were included in the sample (n = 2657). Half of the physicians were asked about the most recent case in which they refused a request for euthanasia or assisted suicide, and half about the most recent case in which they granted a request for euthanasia or assisted suicide.
Results: Of the 2657 eligible physicians, 1374 (52%) responded. The most reported reason not to participate was lack of time. Of the respondents, 248 answered questions about a refused euthanasia or assisted suicide request and 245 about a granted EAS request. Concerns about specific aspects of the euthanasia and assisted suicide process, such as the emotional burden of preparing and performing euthanasia or assisted suicide were commonly reported by physicians who refused and who granted a request. Pressure to grant a request was mostly experienced by physicians who refused a request, especially if the patient was =80 years, had a life-expectancy of =6 months and did not have cancer. The large majority of physicians reported contradictory emotions after having performed euthanasia or assisted suicide.
Conclusions: Society should be aware of the impact of euthanasia and assisted suicide requests on physicians. The tension physicians experience may decrease their willingness to perform euthanasia and assisted suicide. On the other hand, physicians should not be forced to cross their own moral boundaries or be tempted to perform euthanasia and assisted suicide in cases that may not meet the due care criteria.
Objectives: Prevalence rates of death by euthanasia (EUT) and physician-assisted suicide (PAS) have increased among older adults, and public debates on these practices are still taking place. In this context, it seemed important to conduct a systematic review of the predictors (demographic, physical health, psychological, social, quality of life, religious, or existential) associated with attitudes toward, wishes and requests for, as well as death by EUT/PAS among individuals aged 60 years and over.
Method: The search for quantitative studies in PsycINFO and MEDLINE databases was conducted three times from February 2016 until April 2018. Articles of probable relevance (n = 327) were assessed for eligibility. Studies that only presented descriptive data (n = 306) were excluded.
Results: This review identified 21 studies with predictive analyses, but in only 4 did older adults face actual end-of-life decisions. Most studies (17) investigated attitudes toward EUT/PAS (9 through hypothetical scenarios). Younger age, lower religiosity, higher education, and higher socio-economic status were the most consistent predictors of endorsement of EUT/PAS. Findings were heterogeneous with regard to physical health, psychological, and social factors. Findings were difficult to compare across studies because of the variety of sample characteristics and outcomes measures.
Conclusion: Future studies should adopt common and explicit definitions of EUT/PAS, as well as research designs (e.g. mixed longitudinal) that allow for better consideration of personal, social, and cultural factors, and their interplay, on EUT/PAS decisions.
AIMS AND OBJECTIVES: To explore how Flemish nurses working in hospitals and home care experience their involvement in the care of patients requesting euthanasia 15 years after the legalisation of euthanasia.
BACKGROUND: Euthanasia was legalised in Belgium in 2002. Despite prior research that charted the experiences of nurses in euthanasia care before and right after legalisation in Belgium, it remains unclear how Flemish nurses currently, 15 years after the legalisation, experience their involvement.
DESIGN: A grounded theory design, using semi-structured in-depth interviews.
METHODS: We interviewed 26 nurses working in hospitals or in home care, who had experience with caring for patients requesting euthanasia. Data were collected using a purposive sample and then a snowball sample. Data collection and data analysis were conducted simultaneously. Data were analysed by using the Qualitative Analysis Guide of Leuven. The study adhered to the COREQ guidelines.
RESULTS: Caring for a patient requesting euthanasia continues to be an intense experience characterized by ambivalence. The nature of euthanasia itself contributes to the intensity of this care process. The nurses described euthanasia as something unnatural and planned that generated many questions and doubts. Nevertheless, most interviewees stated that they were able to contribute to a dignified end of life and make a difference, giving them a profound feeling of professional fulfilment. However, when nurses were not able to contribute to good euthanasia care, they struggled with strong negative feelings and frustrations.
CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: Although the results suggest some subtle shifts in nurses' experiences over time, they do not indicate perceptions of euthanasia as a normal practice by the nurses involved. Research on the perceptions of nurses who have strong negative experiences or conscientious objections is needed to further clarify nurses' ethical positions on euthanasia care.
AIMS: To explore the intentions of nurses to respond to requests for legal assisted dying.
BACKGROUND: As more Western nations legalise assisted-dying, requests for access will increase across clinical domains. Understanding the intentions of nurses to respond to such requests is important for the construction of relevant policy and practice guidelines.
DATA SOURCES: 45 Australian nurses from aged, palliative, intensive or cancer care settings surveyed in November 2018.
METHOD: Q-methodology studying nurses' evaluations of 49 possible responses to a request for a hastened death. Data consisted of rank-ordered statements analysed by factor analysis with varimax rotation.
FINDINGS: Four distinct types of intentions to respond to requests for assisted-dying: a) refer and support ; b) object to or deflect the request; c) engage and explore the request; or d) assess needs and provide information.
CONCLUSION: The findings underscore the complexity of intentionality in assisted dying nursing practice and differences from other forms of end-of-life care, particularly regarding patient advocacy and conscientious objection. This study enables further research to explore determinants of these intentions. It can also assist the development of professional guidance by linking policy and clinical intentions.
IMPACT: Identified a basic range of nurses' intentions to respond to requests for assisted dying, as there was no evidence at present. Developed a four-fold typology of intentions to respond with most nurses intending to engage in practices that support the requestor and sometimes the request itself. A minority would object to discussing the request. The relatively low level of advocacy within the intended responses selected also is distinctly different from other end-of-life care research findings. This research could assist nursing associations in jurisdictions transitioning to legal assisted-dying to develop guidance ways nurses can frame their responses to requests.
The Canadian province of Quebec enacted in 2014 a legislation that permitted medical assistance in dying (MAID) under specific conditions and the rest of Canada followed suit in June 2016. In this article, which is the second in a set of case series of requests for MAID in Canadian psychiatry, we present the cases of two patients who made a request for MAID to their treating psychiatrist in an outpatient clinic. While one is advanced in age and suffering from intense physical and psychic pain with little if any psychiatric comorbidity, the other is a young and medically healthy woman who nonetheless suffers from extensive psychiatric comorbidity. This article discusses both cases in light of recent scientific literature and case law that is slowly emerging in Canada, focusing on the concepts of the end of life and its legal definition as well as psychic suffering and its management in those wishing to receive physician-assisted dying. In our conclusion, we stress the need to clarify the definition of treatment resistance, the necessity to determine each physician's role when many are involved, as well as the importance of treating psychic pain holistically, which can sometimes require going beyond standard psychiatric care.
The number of elderly suffering from dementia and complex disabilities is gradually increasing in nursing homes, and they form a differentiated group that requires palliative care provided by practitioners in various disciplines from the time of their admission to improve the quality of their remaining lives. The purpose of this study was to explore an interdisciplinary care approach by nurses and related practitioners for the demented and complex-disabled elderly in nursing homes that focuses on palliative care based on an ethical point of view. A qualitative thematic analysis was conducted through in-depth interviews of 29 interdisciplinary practitioners working at 5 nursing homes. From them, 3 themes and 9 subthemes were extracted as the key results. First, practitioners set up cooperative care plans based on constantly tracking down clues to gradual functional deteriorations. Second, practitioners establish a cooperative committee to link residents and practitioners for responding to the subtle expressions of the elderly. Finally, practitioners maximize the opportunities for improving the quality of the elderly’s remaining lives. These results can be the basis for the first prototype in developing interdisciplinary practical guidelines for nursing home–specific palliative care and can provide new insights for the practical care concept of palliative care.