Involvement of palliative care in euthanasia practice in a context of legalized euthanasia : a population-based mortality follow-back study

Background: In the international debate about assisted dying, it is commonly stated that euthanasia is incompatible with palliative care. In Belgium, where euthanasia was legalized in 2002, the Federation for Palliative Care Flanders has endorsed the viewpoint that euthanasia can be embedded in palliative care. Aim: To examine the involvement of palliative care services in euthanasia practice in a context of legalized euthanasia. Design: Population-based mortality follow-back survey. Setting/participants: Physicians attending a random sample of 6871 deaths in Flanders, Belgium, in 2013. Results: People requesting euthanasia were more likely to have received palliative care (70.9%) than other people dying non-suddenly (45.2%) (odds ratio=2.1 (95% confidence interval, 1.5-2.9)). The most frequently indicated reasons for non-referral to a palliative care service in those requesting euthanasia were that existing care already sufficiently addressed the patient's palliative and supportive care needs (56.5%) and that the patient did not want to be referred (26.1%). The likelihood of a request being granted did not differ between cases with or without palliative care involvement. Palliative care professionals were involved in the decision-making process and/or performance of euthanasia in 59.8% of all euthanasia deaths; this involvement was higher in hospitals (76.0%) than at home (47.0%) or in nursing homes (49.5%). Conclusion: In Flanders, in a context of legalized euthanasia, euthanasia and palliative care do not seem to be contradictory practices. A substantial proportion of people who make a euthanasia request are seen by palliative care services, and for a majority of these, the request is granted

State of palliative care development in European Countries with and without legally regulated physician-assisted dying.

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Characteristics of Belgian 'life-ending acts without explicit patient request' : a large-scale death certificate survey revisited

BACKGROUND: “Life-ending acts without explicit patient request,” as identified in robust international studies, are central in current debates on physician-assisted dying. Despite their contentiousness, little attention has been paid to their actual characteristics and to what extent they truly represent nonvoluntary termination of life. METHODS: We analyzed the 66 cases of life-ending acts without explicit patient request identified in a large-scale survey of physicians certifying a representative sample of deaths (n = 6927) in Flanders, Belgium, in 2007. The characteristics we studied included physicians’ labelling of the act, treatment course and doses used, and patient involvement in the decision. RESULTS: In most cases (87.9%), physicians labelled their acts in terms of symptom treatment rather than in terms of ending life. By comparing drug combinations and doses of opioids used, we found that the life-ending acts were similar to intensified pain and symptom treatment and were distinct from euthanasia. In 45 cases, there was at least 1 characteristic inconsistent with the common understanding of the practice: either patients had previously expressed a wish for ending life (16/66, 24.4%), physicians reported that the administered doses had not been higher than necessary to relieve suffering (22/66, 33.3%), or both (7/66, 10.6%). INTERPRETATION: Most of the cases we studied did not fit the label of “nonvoluntary life-ending” for at least 1 of the following reasons: the drugs were administered with a focus on symptom control; a hastened death was highly unlikely; or the act was taken in accordance with the patient’s previously expressed wishes. Thus, we recommend a more nuanced view of life-ending acts without explicit patient request in the debate on physician-assisted dying

Descriptions of euthanasia as social representations: comparing the views of Finnish physicians and religious professionals

In many western societies health professionals play a powerful role in people's experiences of dying. Religious professionals, such as pastors, are also confronted with the issues surrounding death and dying in their work. It is therefore reasonable to assume that the ways in which death-related topics, such as euthanasia, are constructed in a given culture are affected by the views of these professionals. This qualitative study addresses the ways in which Finnish physicians and religious professionals perceive and describe euthanasia and conceptualises these descriptions and views as social representations. Almost all the physicians interviewed saw that euthanasia does not fit the role of a physician and anchored it to different kinds of risks such as the slippery slope. Most of the religious and world-view professionals also rejected euthanasia. In this group, euthanasia was rejected on the basis of a religious moral code that forbids killing. Only one of the religious professionals - the freethinker with an atheist world-view - accepted euthanasia and described it as a personal choice, as did the one physician interviewed who accepted it. The article shows how the social representations of euthanasia are used to protect professional identities and to justify their expert knowledge of death and dying

Trends in continuous deep sedation until death between 2007 and 2013 : a repeated nationwide survey

Background: Continuous deep sedation until death is a highly debated medical practice, particularly regarding its potential to hasten death and its proper use in end-of-life care. A thorough analysis of important trends in this practice is needed to identify potentially problematic developments. This study aims to examine trends in the prevalence and practice characteristics of continuous deep sedation until death in Flanders, Belgium between 2007 and 2013, and to study variation on physicians’ degree of palliative training. Methods: Population-based death certificate study in 2007 and 2013 in Flanders, Belgium. Reporting physicians received questionnaires about medical practices preceding the patient’s death. Patient characteristics, clinical characteristics (drugs used, duration, artificial nutrition/hydration, intention and consent), and palliative care training of attending physician were recorded. We posed the following question regarding continuous deep sedation: ‘Was the patient continuously and deeply sedated or kept in a coma until death by the use of one or more drugs’. Results: After the initial rise of continuous deep sedation to 14.5% in 2007 (95%CI 13.1%-15.9%), its use decreased to 12.0% in 2013 (95%CI 10.9%-13.2%). Compared with 2007, in 2013 opioids were less often used as sole drug and the decision to use continuous deep sedation was more often preceded by patient request. Compared to non-experts, palliative care experts more often used benzodiazepines and less often opioids, withheld artificial nutrition/hydration more often and performed sedation more often after a request from or with the consent of the patient or family. Conclusion: Worldwide, this study is the first to show a decrease in the prevalence of continuous deep sedation. Despite positive changes in performance and decision-making towards more compliance with due care requirements, there is still room for improvement in the use of recommended drugs and in the involvement of patients and relatives in the decision-making process

Development of a complex intervention to support the initiation of advance care planning by general practitioners in patients at risk of deteriorating or dying: a phase 0-1 study

Background: Most patients with life-limiting illnesses are treated and cared for over a long period of time in primary care and guidelines suggest that ACP discussions should be initiated in primary care. However, a practical model to implement ACP in general practice is lacking. Therefore, the objective of this study is to develop an intervention to support the initiation of ACP in general practice. Methods: We conducted a Phase 0-I study according to the Medical Research Council (MRC) Framework. Phase 0 consisted of a systematic literature review about the barriers and facilitators for GPs to engage in ACP, focus groups with GPs were held about their experiences, attitudes and concerns regarding initiating ACP in general practice and a review of ACP interventions to identify potential components for the development of our intervention. In Phase 1, we developed a complex intervention to support the initiation of ACP in general practice in patients at risk of deteriorating or dying, based on the results of Phase 0. The complex intervention and its components were reviewed and refined by two expert panels. Results: Phase 0 resulted in the identification of the factors inhibiting or enabling GPs' initiation of ACP and important components underpinning existing ACP interventions. Based on these findings, an intervention was developed in Phase 1 consisting of: (1) a training for GPs in initiating and conducting ACP discussions, (2) a register of patients eligible for ACP discussions, (3) an educational booklet on ACP for patients to prepare the ACP discussions that includes general information on ACP, a section on the role of GPs in the process of ACP and a prompt list, (4) a conversation guide to support GPs in the ACP discussions and (5) a structured documentation template to record the outcomes of discussions. Conclusion: Taking into account the barriers and facilitators for GPs to initiate ACP as well as the key factors underpinning successful ACP intervention in other health care settings, a complex intervention for general practice was developed, after gaining feedback from two expert panels. The feasibility and acceptability of the intervention will subsequently be tested in a Phase II study

Factors associated with the goal of treatment in the last week of life in old compared to very old patients: a population-based death certificate survey

Background: Little is known about the type of care older people of different ages receive at the end of life. The goal of treatment is an important parameter of the quality of end-of-life care. This study aims to provide an evaluation of the main goal of treatment in the last week of life of people aged 86 and older compared with those between 75 and 85 and to examine how treatment goals are associated with age. Methods: Population-based cross sectional survey in Flanders, Belgium. A stratified random sample of death certificates was drawn of people who died between 1 June and 30 November 2007. The effective study sample included 3,623 deaths (response rate: 58.4%). Non-sudden deaths of patients aged 75 years and older were selected (N = 1681). Main outcome was the main goal of treatment in the last week of life (palliative care or life-prolonging/curative treatment). Results: In patients older than 75, the main goal of treatment in the last week was in the majority of cases palliative care (77.9%). Patients between 75 and 85 more often received life-prolonging/curative treatment than older patients (26.6% vs. 15.8%). Most patient and health care characteristics are similarly related to the main goal of treatment in both age groups. The patient's age was independently related to having comfort care as the main goal of treatment. The main goal of treatment was also independently associated with the patient's sex, cause and place of death and the time already in treatment. Conclusion: Age is independently related to the main goal of treatment in the last week of life with people over 85 being more likely to receive palliative care and less likely to receive curative/life-prolonging treatment compared with those aged 75-85. This difference could be due to the patient's wishes but could also be the result of the attitudes of care givers towards the treatment of older people

Involvement of palliative care services strongly predicts place of death in Belgium

Introduction: Place of death is considered a quality indicator of end-of-life care and enabling people to die were they choose is an important aspiration of palliative care. This study aims to examine the association between involvement of palliative care services and place of death. Methods: Data about patient characteristics, use of general health care, and involvement of palliative care services in nonsudden or expected deaths in all health care settings in 2005-2006 (N = 1690) were collected by a surveillance network of general practitioners (GPs) in Belgium. Bivariate and multivariate associations between involvement of palliative care services and dying at home, in hospital, in a care home, or in a palliative care unit were examined using chi(2) tests and Wald tests. Results: Palliative care services were involved in 21.8% of deaths of those living at home, in 29.1% of those living in care homes, and in 12.4% of deaths in hospital. People were more likely to die in their usual residence rather than in hospital if multidisciplinary palliative home care teams (odds ratio [OR]: 8.4, confidence interval [CI]: 4.7-15.1) or the palliative care reference persons of their care home (OR: 9.4, CI: 3.3-26.7) were involved. Involvement of multidisciplinary palliative support teams in hospitals was associated with lower chances of dying at home (OR: 0.3, CI: 0.1-0.9). High involvement of GPs was not directly associated with out-of-hospital death. Discussion: Involving multidisciplinary palliative home care teams and palliative care reference persons in care homes could support people in dying out-of-hospital. Health care policy-makers should consider strategies to improve involvement of palliative care services in all health care settings