Article

Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: A repeated cross-sectional survey

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Abstract

In 2002, the euthanasia act came into effect in the Netherlands, which was followed by a slight decrease in the euthanasia frequency. We assessed frequency and characteristics of euthanasia, physician-assisted suicide, and other end-of-life practices in 2010, and assessed trends since 1990. In 1990, 1995, 2001, 2005, and 2010 we did nationwide studies of a stratified sample from the death registry of Statistics Netherlands, to which all deaths and causes were reported. We mailed questionnaires to physicians attending these deaths (2010: n=8496 deaths). All cases were weighted to adjust for the stratification procedure and for differences in response rates in relation to the age, sex, marital status, region of residence, and cause and place of death. In 2010, of all deaths in the Netherlands, 2·8% (95% CI 2·5-3·2; 475 of 6861) were the result of euthanasia. This rate is higher than the 1·7% (1·5-1·8; 294 of 9965) in 2005, but comparable with those in 2001 and 1995. Distribution of sex, age, and diagnosis was stable between 1990 and 2010. In 2010, 77% (3136 of 4050) of all cases of euthanasia or physician-assisted suicide were reported to a review committee (80% [1933 of 2425] in 2005). Ending of life without an explicit patient request in 2010 occurred less often (0·2%; 95% CI 0·1-0·3; 13 of 6861) than in 2005, 2001, 1995, and 1990 (0·8%; 0·6-1·1; 45 of 5197). Continuous deep sedation until death occurred more frequently in 2010 (12·3% [11·6-13·1; 789 of 6861]) than in 2005 (8·2% [7·8-8·6; 521 of 9965]). Of all deaths in 2010, 0·4% (0·3-0·6; 18 of 6861) were the result of the patient's decision to stop eating and drinking to end life; in half of these cases the patient had made a euthanasia request that was not granted. Our study provides insight in consequences of regulating euthanasia and physician-assisted suicide within the broader context of end-of-life practices. In the Netherlands the euthanasia law resulted in a relatively transparent practice. Although translating these results to other countries is not straightforward, they can inform the debate on legalisation of assisted dying in other countries. The Netherlands Organization for Research and Development (ZonMw).

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... 7 The 2002 regulation specified strict conditions for euthanasia and physicianassisted suicide, including a voluntary and well considered request by the patient, unbearable suffering without prospect of improvement, informing the patient about their situation and prospects, no reasonable alternative in the form of treatment, consulting a second independent clinician, exercising due medical care, and reporting to one of five regional euthanasia review committees (ERCs) for review. 4,8 Euthanasia, physicianassisted suicide, or both these endoflife practices have since been legalised in Canada (2016), the USA (California, Colorado, Washington DC, Hawaii, New Jersey, and Maine; 2015- 19), Australia (Victoria, Western Australia, and South Australia; 2017- 19), New Zealand (2021), and Spain (2021). 1 After the 2002 regulation of euthanasia and physician assisted suicide in the Netherlands, national survey studies on endoflife decision making reported an increase in the nationwide rate of total endoflife practices, from 39·4% of all deaths in 1990 to 58·1% in 2015, and the frequency of euthanasia more than doubled from 1·7% of all deaths in 1990 and 2005 to 4·5% in 2015. 5 In Belgium, where euthanasia has also been regulated since 2002, the frequency of reported euthanasia has also increased, as has the frequency of physicianassisted suicide in Switzerland and Oregon (USA). ...
... [9][10][11] This overestimation is probably caused by the format of the clinician survey, which does not ask directly whether euthanasia has occurred, but rather "whether the respondent had administered, supplied, or prescribed drugs with the explicit intention of hastening death, resulting in the patient's death". 4 Clinicians might answer this question in the affirmative in cases for which nonlethal drugs were used (eg, opioids) to provide symptom relief or sedation that might possibly have ...
... hastened death; there is no evidence of nonreporting of euthanasia to ERCs. 4,12 Patients with amyotrophic lateral sclerosis, a progressive and lethal neurodegenerative disease, have regularly been at the forefront of debates regarding legalisation of euthanasia and physicianassisted suicide. [13][14][15] Neurological and neurodegenerative diseases are the second most frequently reported underlying disease-after cancer-of people choosing assisted dying in the Netherlands, the US states of Oregon and Washington, and parts of Canada. ...
Article
Background: Amyotrophic lateral sclerosis is a progressive and lethal neurodegenerative disease that is at the forefront of debates on regulation of assisted dying. Since 2002, when euthanasia was legally regulated in the Netherlands, the frequency of this end-of-life practice has increased substantially from 1·7% of all deaths in 1990 and 2005 to 4·5% in 2015. We aimed to investigate whether the frequency of euthanasia in patients with amyotrophic lateral sclerosis had similarly increased since 2002, and to assess the factors associated with end-of-life practices and the quality of end-of-life care in patients with this disease. Methods: Using data from the Netherlands ALS registry, we did a population-based cohort study of clinicians and informal caregivers of patients with amyotrophic lateral sclerosis to assess factors associated with end-of-life decision making and the quality of end-of-life care. We included individuals who were diagnosed with amyotrophic lateral sclerosis according to the revised El-Escorial criteria, and who died between Jan 1, 2014, and Dec 31, 2016. We calculated the frequency of euthanasia in patients with amyotrophic lateral sclerosis from reports made to euthanasia review committees (ERCs) between 2012 and 2020. Results were compared with clinic-based survey studies conducted in 1994-2005. End-of-life practices were end-of-life decisions by a clinician when hastening of death was considered as the potential, probable, or definite effect comprising euthanasia, physician-assisted suicide, ending of life without explicit request, forgoing life-prolonging treatment, and intensified alleviation of symptoms. Findings: Between Jan 1, 2012, and Dec 31, 2020, 4130 reports of death from amyotrophic lateral sclerosis were made to ERCs, of which 1014 were from euthanasia or physician-assisted suicide (mean frequency 25% [SD 3] per year). Sex and gender data were unavailable from the ERC registry. Of 884 patients with amyotrophic lateral sclerosis who died between Jan 1, 2014, and Dec 31, 2016, their treating clinician was identified for 731 and a caregiver was identified for 741, of whom 356 (49%) and 450 (61%), respectively, agreed to participate in the population-based survey study. According to clinicians, end-of-life practices were chosen by 280 (79%) of 356 patients with amyotrophic lateral sclerosis who died. The frequency of euthanasia in patients with amyotrophic lateral sclerosis in 2014-16 (141 [40%] of 356 deaths in patients with amyotrophic lateral sclerosis) was higher than in 1994-98 (35 [17%] of 203) and 2000-05 (33 [16%] of 209). Median survival of patients with amyotrophic lateral sclerosis from diagnosis was 15·9 months (95% CI 12·6-17·6) for those who chose euthanasia and 16·1 months (13·4-19·1) for those who did not choose euthanasia (hazard ratio 1·07, 95% CI 0·85-1·34; p=0·58). According to caregivers, compared with other end-of-life practices, patients with amyotrophic lateral sclerosis choosing euthanasia commonly reported reasons to hasten death as no chance of improvement (53 [56%] of 94 patients who chose euthanasia vs 28 [39%] of 72 patients who chose other end-of-life practices), loss of dignity (47 [50%] vs 15 [21%]), dependency (34 [36%] vs five [7%]), and fatigue or extreme weakness (41 [44%] vs 14 [20%]). According to caregivers, people with amyotrophic lateral sclerosis-whether they chose euthanasia or did not-were satisfied with the general quality (83 [93%] of 89 patients who chose euthanasia vs 73 [86%] of 85 patients who did not) and availability (85 [97%] of 88 vs 81 [91%] of 90) of end-of-life care. Interpretation: The proportion of patients with amyotrophic lateral sclerosis who chose euthanasia in the Netherlands has increased since 2002. The choice of euthanasia was not associated with disease or patient characteristics, depression or hopelessness, or the availability or quality of end-of-life care. The choice of euthanasia had no effect on overall survival. Future studies could focus on the effect of discussing end-of-life options on quality of life as part of multidisciplinary care throughout the course of the disease, to reduce feelings of loss of autonomy and dignity in patients living with amyotrophic lateral sclerosis. Funding: Netherlands ALS Foundation.
... Approximately 6% of Dutch older adults has an AED [8]. The percentage of HD patients with an AED is unknown. ...
... The percentage of HD patients with an AED is unknown. In 2010, the percentage of deaths by euthanasia was higher in patients with HD (12-21%) than in the general population (3%) and in patients with cancer (6%) [7,8]. In older people, possession of an AED increases the likelihood of requesting euthanasia, but having an AED does not necessarily mean that people will request euthanasia [9]. ...
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Background Huntington’s disease (HD) has a poor prognosis. For HD patients in the Netherlands, one way of dealing with their poor prognosis is by drawing up an advance euthanasia directive (AED). Little is known about the perspectives of HD patients on their AED. Aim To gain insight into patients’ views on and attitudes towards their AED, and changes over time. Methods A longitudinal qualitative interview study using 1 to 6 semi-structured interviews over a period of maximum three years. Nine HD patients (5 outpatient clinic, 3 day care, 1 assisted living facility) who either had an AED or were thinking about drawing it up participated in this study. Results We identified two themes that characterize patients’ perspectives on their AEDs: (1) general character of the AED; (2) uncertainty around their AED. Ad (1) The conditions that the participants described in their AED were generally not very specific for the person. Mostly they were general notions of unbearable suffering. Familiarity with HD in the family could play a role in drawing up an AED. Ad (2) Participants generally were aware of the tentative character of their AED and could have doubts concerning their own willingness or the willingness of others in the future. Sometimes these doubts were so great, that it prevented them from drawing up an AED. However, patients did not alter their AED during the follow-up period or changed in their view or attitude on their AED. Conclusion HD patients that draw up an AED usually describe general conditions for euthanasia and recognize that these conditions may change as the disease progresses. An AED or the wish to draw one up may be a good conversation starter for conversations about goals and preferences for future care.
... Foi realizada uma revisão narrativa da literatura com pesquisa na b-on, com as palavras-chave "voluntary cessation eating and drinking" AND "end of life" AND "ethical issues" AND "autonomy". (3,5,9,12). ...
... Desta forma, a CVAH não representa suicídio assistido para os profissionais de saúde (31). No entanto, alguns autores afirmam que existe permissibilidade ética no suicídio assistido pelo médico e, por isso, continua a ser uma questão de disputa ética contínua, reforçando a ideia de que a permissibilidade ética do suicídio e da CVAH estão vinculados, sendo que, a permissibilidade ética do último depende, em parte, da permissibilidade ética do primeiro (12). ...
Article
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The current review pretends to understand the state of the art regarding voluntarily stopping of eating and drinking in the end of life related to: definitions, motivations, process of death, and its relation to the concepts of assisted suicide, euthanasia, autonomy and palliative care.
... This contrasts with comparable Western countries, many of whom have undertaken extensive research on medical ELDs and so have a current evidence base. [1][2][3][4][5][6][7][8][9][10][11] The existing Australian studies which investigated medical ELDs are dated [12][13][14][15][16] or used methodologies that cannot provide population-level data [17][18][19][20]. ...
... The legalisation of VAD will affect practice of medical ELDs, and may also have significant implications for health professionals, health administrators and health systems. For example, previous overseas research reported increased hospice referrals and greater efforts by medical practitioners to improve their knowledge of palliative care following the enactment of similar laws [9,26]. ...
Article
Little is known in Australia about current practice relating to medical end-of-life decisions preceding patient deaths. This study aimed to translate and culturally adapt a European questionnaire on medical end-of-life decisions and end-of-life care to the Australian context, producing a questionnaire to assess current medical practice in Australia and enable comparison with international studies. Following initial research team review, an English translation of the questionnaire was culturally adapted using four waves of cognitive pre-testing interviews with members of the target community: Australian doctors (n=27) from different specialties, clinical settings and geographical locations. Cognitive interviewing was used to identify potential problems with the translated questionnaire by examining the cognitive processes participants used to answer questions. Two experts in end-of-life research provided feedback on the questionnaire after the third wave of cognitive interviews. Research team review occurred again after the third and fourth waves of cognitive interviews. Interview notes were reviewed, coded and analysed using content analysis. A consensus approach was used to identify necessary adaptations, with all members of the research team endorsing the adaptations. Following cognitive pre-testing, an online version of the questionnaire was piloted with doctors, nurses and health law researchers (n=13). Improvements to questionnaire wording, flow/routeing and design were identified during the cognitive interviewing and piloting process and implemented. Saturation in terms of face and content validity and acceptability of the questionnaire was achieved after four rounds of cognitive interviews. Participants generally agreed that the adapted questionnaire instructions were easy to follow, the questions were easy to understand, they felt comfortable answering all the questions, and the online questionnaire format was user friendly. The time taken to complete the questionnaire (average 9.2 min) was also acceptable to participants. Cognitive interviewing was a suitable method for identifying and solving challenges with comprehension and applicability of the questionnaire within the Australian context. The final questionnaire was well accepted by doctors and is now being used in a study exploring the incidence and nature of medical end-of-life decisions involving adult patients in one Australian state (Victoria). This questionnaire may be suitable for use or further adaptation in research in other English speaking jurisdictions.
... These committees consist of legal experts, physicians, and ethicists who assess the compliance of each case with the legal requirements. The committees review the cases, ensuring that the physicians followed the prescribed procedures [39]. The review committees also publish annual reports detailing the number of euthanasia cases and their compliance with the legal requirements. ...
Chapter
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Since many years ago, people have been debating whether or not euthanasia should be regarded as a basic right. Supporters contend that everyone has the right to decide how they want to die, while detractors contend that euthanasia undermines the importance of protecting human life. Mercy killing or assisted suicide is a highly controversial issue not just in India but in many other nations. The ending-of-life practice poses fundamental, ethical, religious, and moral problems associated with it. It is still a matter of question in bioethics and lacks a legal framework. The word euthanasia has been derived from the Greek word "Eu" means good and "Thanatos" means death. There has been great advancement in our legal system but a few issues are yet to be addressed, out of which is "the legality of euthanasia". This paper deals with the history, types, and arguments related to the right to euthanasia as a fundamental right in view with the ethical, moral, and legal principles/perspectives. Further, this paper provides a comparative and analytical study of legalization regarding euthanasia in India with respect to foreign countries including those based on morality, ethics, and the risk of misuse.
... Es interesante destacar que hay sujetos que aun negándose la posibilidad de eutanasia, decidieron cesar la alimentación y provocar su propia muerte. Esto correspondió a un 0.2% de las muertes (13) . ...
Article
International situation on euthanasia varies among countries. Even though in most of the countries worldwide active euthanasia is forbidden by law, to the date four countries (The Netherlands, Belgium, Luxembourg and Colombia) have approved and regulated by law active euthanasia (defined as “physician’s intentionally administering a treatment -usually medicationto cause the patient’s death, with the patient’s full, informed consent”). For a country like Chile, in which all types of euthanasia are forbidden by law, it is important to look forward to the international situation, in order to enrich public policy debate, based on the international empirical experience.
... Al respecto, Rodríguez-Prat et al., en una revisión de varias investigaciones cualitativas, agruparon temas que se relacionan con el deseo de adelantar la muerte en pacientes con una enfermedad avanzada (41). Los autores encontraron que algunos participantes manifestaron que su solicitud de eutanasia Según las estadísticas recopiladas en los países donde se practica legalmente la muerte asistida, como en Bélgica y Holanda, la mayoría de las solicitudes para acelerar la muerte surgen en el contexto de diagnósticos de cáncer grave y terminal (47,48). De esta forma, tener una enfermedad avanzada puede influir en la solicitud de la eutanasia o el suicidio asistido. ...
Article
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Introducción: Las enfermedades crónicas van en aumento e implican múltiples consecuencias que, en un determinado momento, con el paso de los años, pueden llegar a un estado terminal de la enfermedad. El objetivo de este estudio fue analizar el discurso de enfermos crónicos sobre la muerte digna, la eutanasia y el suicidio médicamente asistido para visibilizar la necesidad de la regulación de la muerte digna. Materiales y métodos: Se llevó a cabo una investigación cualitativa que se inserta dentro del paradigma del construccionismo social, mediante entrevistas a enfermos crónicos de la Ciudad de México, utilizando una guía semiestructurada. Se empleó el análisis del discurso para encontrar convergencias y diferencias en los discursos. Resultados: Se entrevistaron siete personas vía telefónica de enero a marzo del 2022. Las principales enfermedades fueron: lupus, cáncer, artritis, diabetes y ovarios poliquísticos. Los discursos convergen hacia una muerte digna sin dolor, sufrimiento, tranquila y en casa. Coinciden sus discursos en legalizar la eutanasia y el suicidio médicamente asistido; sin embargo, hay divergencias en cuanto a solicitarlas. Conclusiones: La experiencia de la enfermedad crónica es un factor importante para aceptar en un futuro la muerte médicamente asistida, sin ser una carga para otros y evitar el dolor y sufrimiento al final de la vida. La religión influye en las decisiones, pero se puede observar una mayor apertura para aceptar la legalización de la muerte médicamente asistida.
... Netherlands, Belgium (where AD is allowed) and The European Association for Palliative Care (which is against AD) define euthanasia as a physician knowingly kills a patient by administering medication upon voluntary patient's wish [2][3][4]. In contrast to euthanasia, in withdrawing and withholding Life-Sustaining Treatment (LST) patient will die from disease progression not from these interventions and there is no intention to accelerate demise. ...
Article
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To end of life a patient or expedite demise by using any medical interventions on voluntary patient’s demand, known as Assisted Dying (AD), it includes: Physician Assisted Suicide (PAS) and euthanasia [1]. PAS in which doctor offers a patient medications to be administered by the patient purposely to commit suicide on voluntary patient’s request [1]
... 161 En el año 2012, el investigador holandés Bregje D. Onwuteaka-Philipsen publicó un análisis de la práctica de la eutanasia en su país. 162 Encontró que, en el año 2005, 1.7% de las causas de muerte fueron por eutanasia, cifra que llegó a 2.8% en el 2012; 77% de los casos fueron asistidos por médicos, 56% de los pacientes lo solicitaron por un sentimiento de pérdida de dignidad y 47% por dolor intratable. ...
Article
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In July 2017, the Human Rights Committee prepared the draft General Comment No. 36 on article 6 of the International Covenant on Civil and Political Rights, on the human right to life. The opportunity to provide comments was welcomed and a comprehensive transdisciplinary document was sent commenting with regard to this right, focused from a biological sciences, philosophical anthropology and bio-juridical perspective, according to the corpus iuris of human rights, presenting an ontological and deontological structure in accordance with the current scientific evidence, on the right to human life, particularly in its beginning and end, from an inclusive and objective human perspective, to be taken into account by the members of the Committee, in order to reformulate stances that violate this right.
... The particular Swiss cultural context in which assisted suicide enjoys a high level of social acceptance [28], might also be mirrored in a comparably low percentage of cancerassociated assisted suicides. Although cancer was still the most common underlying disease for assisted suicide in Switzerland, the percentage of cancer patients within the total group of people who chose assisted suicide was only 40%, which is significantly lower than that in other countries in which 70-80% of assisted dying cases relate to cancer diseases [6,[29][30][31]. It is obvious that many people in Switzerland, in particular the elderly, choose to assert their freedom to take the option of assisted dying for reasons other than the "classical" fatal disease, cancer. ...
Article
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Aims of the study: The legalisation of assisted suicide is one of the most debated topics in the field of medical ethics worldwide. In countries in which assisted suicide is not legal, public discussions about its approval also encompass considerations of the long-term consequences that such legalisation would bring, for example, how many people will use this option, from what conditions would they be suffering, would there be differences between male and female assisted suicide and which developments and trends could be expected if there were to be a marked increase of cases of assisted suicide over time? Methods: In order to answer these questions, we present the development of assisted suicide in Switzerland over a 20-year period (1999-2018; 8738 cases) using data from the Swiss Federal Statistical Office. Results: During the observation period, the number of assisted suicides rose significantly: when four 5-year periods (1999-2003, 2004-2008, 2009-2013, 2014-2018) were analysed, the number of assisted suicide cases doubled over each period compared with the preceding one (Χ = 206.7, 270.4 and 897.4; p <0.001). The percentage of assisted suicides among all deaths rose from 0.2% (1999-2003; n = 582) to 1.5% (2014-2018: n = 4820). The majority of people who chose assisted suicide were elderly, with increasing age over time (median age in 1999-2003: 74.5 years vs 2014-2018: 80 years), and with a predominance of women (57.2% vs 42.8%). The most common underlying condition for assisted suicide was cancer (n = 3580, 41.0% of all assisted suicides). Over time, assisted suicide increased similarly for all underlying conditions; however, the proportion in each disease group remained unchanged. Conclusions: It is a matter of one's viewpoint whether the rise of assisted suicide cases should be considered alarming or not. These figures reflect an interesting social development but still do not appear to represent a mass phenomenon.
... Other reasons for not reporting euthanasia cases that were recognized as euthanasia included procedural violations, such as failure to obtain a written statement of intent, the use of drugs not typically used for euthanasia, and the fact that the patient's prognosis was originally short, and euthanasia did not shorten the patient's life. Administration of lethal drugs without patient request occurred in 1.7% of all deaths in the Flanders region of Belgium alone (Chambaere et al. 2015) and 0.2% of all deaths in the Netherlands (Onwuteaka-Philipsen et al. 2012). ...
Article
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Objectives: Currently, active euthanasia is legalized in only 7 countries worldwide. These countries have encountered problems in its implementation. The study aims to summarize the practical clinical problems in the literature on active euthanasia. Methods: A systematic literature review was conducted using 140 works consisting of 130 articles from PubMed and EthxWeb and data from 10 euthanasia laws. Results: After reviewing the specific problems reported to be associated with euthanasia in each country, 5 problems were extracted: many ambiguous conditions with room for interpretation, insufficient assurance of voluntariness, response to requests for euthanasia due to psychological distress, conscientious objection, and noncompliance by medical professionals. Significance of results: Multiple ambiguous conditions that are open to interpretation can result in a "slippery slope phenomenon." An insufficient guarantee of voluntariness violates the principle of respect for autonomy, which is the underlying justification for euthanasia. In cases of euthanasia due to mental anguish, a distinction between a desire for death caused by psychological pain alone prompted by mental illness and a desire for death caused by mental symptoms prompted by physical illness is essential. Conscientious objection should remain an option because of the heavy burden placed on doctors who perform euthanasia. Noncompliance by medical professionals due to ignorance and conflicts regarding euthanasia is contrary to procedural justice.
... Focus for these lawmakers is often on the potential for 'the slippery slope' and an 'inevitable erosion' of safety requirements, standards and laws that would lead to the abuse of assisted dying amongst the most vulnerable in society. Whilst fears surrounding the 'the slippery slope' argument and an 'inevitable erosion' of safety requirements, standards and laws have not been substantiated in current studies (135)(136)(137), fear that social pressure may still take its toll on vulnerable populations has not been lost in Kishore's reporting of calls by some lawmakers in the USA that assisted dying may benefit decreasing resources (95). Here too circumstances and context appear to shape views on death with dignity and assisted dying. ...
Article
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Introduction: The debate on assisted dying and its components, euthanasia and physician-assisted suicide has evolved with the emergence of the right to dignity and the wish to hasten death (WTHD). Whilst shaped by local legal and sociocultural considerations, appreciation of how patients, healthcare professionals and lawmakers relate notions of dignity to self-concepts of personhood and the desire for assisted dying will better inform and direct support of patients. Methods: A Systematic Evidence Based Approach guided systematic scoping review (SSR in SEBA) of perspectives of dignity, WTHD and personhood featured in PubMed, Embase, PsycINFO, Cochrane Database of Systematic Reviews, CINAHL, Scopus databases and four key Palliative Care journals was conducted to address "what is the relationship between dignity and WTHD in the assisted dying debate?" The Ring Theory of Personhood (RToP) is adopted to guide study "How is dignity conceptualised by patients with WTHD?" and "what are prevailing perspectives on the role of assisted dying in maintaining a dying patient's dignity?" Results: 6947 abstracts were identified, 663 full text articles reviewed, and 88 articles included. The four domains identified revealed an evolving concept of dignity that influence positions taken with respect to requests for assisted dying that spur support, opposition and different dignity-conserving measures to circumnavigate assisted dying. Conclusion: Concepts of dignity constantly evolve throughout the patient's end of life journey. Understanding when and how these concepts of personhood change and trigger the fear of a loss of dignity or intractable suffering associated with a loss of dignity and spur WTHD could direct timely, individualised, and appropriate person-centred dignity conserving measures. We believe a RToP-based tool could fulfil this role and further study into the design of this tool is planned.
... After the legalization of euthanasia and assisted suicide (EAS) in the Netherlands in 2002, movements began to implement similar laws in other European countries (Onwuteaka-Philipsen et al., 2012;Chao et al., 2016). ...
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The term “euthanasia” refers to medical interventions that involve the direct administration of a lethal drug to the patient who requests it and meets certain requirements. Currently in Italy euthanasia constitutes a crime and falls within the hypotheses foreseen and punished by Article 579 (Murder of consenting person) or by article 580 (Instigation or aid to suicide) of the penal code. On the contrary, medically assisted suicide in some cases and the suspension of treatment constitute an inviolable right pursuant to art. Thirty two of the Constitution and Law 219/2017. Thanks to the sentence 242/2019 of the Constitutional Court, in Italy it is instead possible to request medically assisted suicide, that is, the indirect help of a doctor to die. There are four conditions required: whoever requests it must be fully capable of understanding and willing, must have an irreversible pathology that is the bearer of severe physical or mental disease, and must survive thanks to life-saving treatments. The Italian referendum “Free until the end” aims to introduce legal euthanasia through the partial repeal of art. 579 c.p. which punishes the murder of the consenting party. The authors analyze the reasons for the referendum in the light of the Italian and European scenario, analyzing the first Italian case of assisted suicide immediately after the referendum which inevitably becomes a starting point for ethical and medico-legal reflection on the issue. On 02.15.2022 the Italian Constitutional Court declared the Referendum on Legal Euthanasia inadmissible.
... While patients are increasingly seeking access to euthanasia (4,24), thus far, euthanasia in patients with dementia has constituted only a small percentage of all cases in the Netherlands and Belgium (see Table 2). Most of the patients who receive euthanasia in the Netherlands (39,40) and Belgium 5 are suffering from the final stages of a malignant disease. ...
Article
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Euthanasia was first legalized in the Netherlands and Belgium in 2001 and 2002, respectively. Currently they are among the few countries that also allow euthanasia on the basis of dementia, which is still considered controversial, both from a scientific and societal perspective. To date, euthanasia in dementia constitutes a small proportion of all Dutch and Belgian euthanasia cases. However, instances are rising due to a growing awareness among the general public about the possibilities of a self-chosen end-of-life and the willingness among medical professionals to perform euthanasia in individuals diagnosed with dementia. In both countries euthanasia is allowed under strict conditions in patients with dementia and decisional capacity regarding euthanasia, while in the Netherlands an advance euthanasia directive can also replace an oral request for euthanasia in those with late-stage dementia. Judging euthanasia requests from patients with dementia is complex and the assessment of the due care criteria (especially those related to decisional capacity and unbearable suffering) requires caution and great care. In this narrative review, we reflect on the legal regulation, clinical guidelines and societal debate regarding euthanasia in dementia in the Netherlands and Belgium. By discussing the 20 years of experience with the ethical dilemmas and controversial aspects surrounding this delicate topic, we hope to inform the preparation or implementation of new legislation on euthanasia in dementia in other countries.
... El objetivo del presente trabajo fue explorar la validez de esos supuestos según la experiencia acumulada en los Países Bajos y en Bélgica, donde la MMA tiene un respaldo legal desde el año 2002 6,7 . ...
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The debate on legalization of physician-assisted death (PAD) has focused on its purely individual aspects, leaving aside equally relevant social dimensions such as a progressive expansion of PAD's causes, strains and changes in the doctor-patient relationship, and unreported PADs. The aim of this work was to explore these aspects through an analysis of the experience of Belgium and the Netherlands, countries where PAD is legal since 2002. The results, obtained through a systematic review of the literature, indicate that in both countries, the acceptance of the concept of "psychological suffering" allowed PAD to be performed in psychiatric patients, in persons with dementia and in older people with geriatric conditions. The acceptance to perform a PAD has a significant emotional burden for the physician who must assume the role of executor of the patient's will, which is aggravated by pressures from patients and their relatives. Moreover, more than 30% of PADs are not reported. All this information was obtained from physicians not willing to incriminate themselves, after the commission of the PADs, therefore hampering the monitoring of law abiding. These results reveal the existence of a social impact of PAD decriminalization that deserves greater consideration and further studies.
... Surveys among health care professionals (HCP) show that they accompany individuals internationally on this path and that it cannot be considered an isolated case [1,6,10,12,14,15]. According to calculations from the Netherlands and Switzerland, 0.4% to 2.1% of all deaths per year are associated with VSED [2,[16][17][18][19]. ...
Article
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Background: Voluntary stopping of eating and drinking as an option to end life prematurely is gaining international attention, and health care professionals are increasingly confronted with the wish to die through voluntary stop- ping of eating and drinking by individuals. While to date, there are no guidelines in Switzerland to orient professional support, it is of interest how professionals and other people involved react to the situation. The aim of this qualitative study was to explore how health care professionals in Switzerland accompany individuals during voluntary stopping of eating and drinking and to analyze this decision-making process. Methods: Charmaz’s grounded theory constructivist methodology uses guidelines for systematic, theory-driven data analysis underpinned by a pragmatic philosophical perspective. Data were collected in autumn 2016 as part of a regional palliative care conference on voluntary stopping of eating and drinking. All participants of the expert meet- ing (N = 50, including nurses, counsellors, ethicists, medical doctors, politicians, volunteers, and relatives) were invited to the focus group interviews, of which N = 47 participated. We conducted five focus group interviews, each lasting one hour. Results: The results showed that the accompaniment of those willing to die during voluntary stopping of eating and drinking was either discussed and cleared with one another or was unspoken and silently accompanied. Conclusions: The demands of participants for more knowledge must be heeded, and there is also a need for system- atic instructions on how to proceed in the case of voluntary stopping of eating and drinking support and what needs to be considered.
... Durante un período de 10-13 años aumentaron todas las intervenciones, incluida la eutanasia. En los países en que tanto eutanasia como suicidio asistido están despenalizados (Bélgica, Países Bajos), la eutanasia es 10 veces más frecuente que el suicidio asistido 17 . ...
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Resumen Objetivo Comparar la ley española de eutanasia y suicidio asistido con las que existen en otros países. Diseño Revisión sistemática de la bibliografía. Fuentes de datos Se buscaron en Medline/PubMed, EMBASE y Biblioteca Cochrane los estudios que contuvieran en su título o resumen los descriptores «eutanasia» o «suicidio asistido» y además «legislación» o «ley», entre 2002 y final de 2020. Selección de estudios La búsqueda encontró 1.647 estudios y tras su cribado se valoraron 663, de los cuales 30 se incluyeron en la revisión. Se rechazaron estudios en los que solo constaran opiniones o no aportaran datos sobre la eutanasia/suicidio asistido en los países que los tienen regulados. Extracción de datos Se registraron los criterios que regulan la aceptación o rechazo de una petición de eutanasia o suicidio asistido en España y en los demás países en que están despenalizados. Resultados Las regulaciones de la eutanasia en el mundo pueden agruparse en tres: leyes que permiten la eutanasia y el suicidio asistido (Países Bajos, Bélgica, Canadá, algunos estados de Australia, Nueva Zelanda, España), en las que la ley solo permite el suicidio asistido (EE. UU.) y en las que se admite únicamente el suicidio asistido y en base a sentencias judiciales, sin legislación específica (Suiza, Alemania). Conclusiones Aunque hay diferencias, las leyes a las que más se asemeja la ley española de eutanasia son las de Países Bajos y Bélgica, por lo que es previsible que la casuística de eutanasia y sus cifras en España se parezcan en el futuro a las de estos países.
... It must be distinguished from psychiatric diseases (Gruenewald, 2018;Wax et al., 2018), loss of appetite at the end of life (Pinho-Reis et al., 2018;Requena & Andrade Dos Santos, 2018) or eating disorders (Shinjo et al., 2019;. The occurrence of VSED is between 0.4% and 2.1% among all deaths in the Netherlands (Chabot & Goedhart, 2009;Onwuteaka-Philipsen et al., 2012) and Switzerland (Stängle, Schnepp, Büche, et al., 2019; which is confirmed by surveys of healthcare professionals, of which 32%-62% of those participating have already accompanied a person during VSED (Bolt et al., 2015;Ganzini et al., 2003;Hoekstra et al., 2015;Shinjo et al., 2019;Stängle, Schnepp, Büche, et al., 2019;Stängle, Schnepp, Büche, Häuptle, et al., 2020). ...
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Aim To gain insight into the experiences of family caregivers who accompanied a loved one during voluntary stopping of eating and drinking and to identify similarities and differences between cases of voluntary stopping of eating and drinking to develop a conceptual model. Design A qualitative holistic multiple case study. Methods We conducted narrative interviews with family caregivers (N = 17). We first analysed them inductively within the cases, followed by a cross-case analysis to merge the experiences into a conceptual model. Results Family caregivers who could accept their loved one's wish to die stood up for the last will, especially when the cognitive abilities declined. They had to take on the role of an advocate to protect their self-determination from others who tried to interrupt the process. In their advocacy, they found themselves constantly in moral discrepancies. Usually without support, they provided nursing care until death. The subsequent processing phase was characterized by evaluating the dying situation and placing voluntary stopping of eating and drinking in their value scheme.
... Evidence from other countries where assisted death has been legal for a number of years suggest that calibration occurs as the system, and persons within the system, adjust to incorporating assisted death as part of their practice [32][33][34][35]. Hamarat, drawing upon an ethnographic study of assisted dying in two countries, suggested that over time "aid-in-dying" becomes an "institution" in itself that is "framed, bound, and structured by norms." ...
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Background Even as healthcare providers and systems were settling into the processes required for Medical Assistance in Dying (MAID) under Bill C-14, new legislation was introduced (Bill C-7) that extended assisted death to persons whose natural death is not reasonably foreseeable. The purpose of this paper is to describe the experiences of nurses and nurse practitioners with the implementation and ongoing development of this transition. Methods This qualitative longitudinal descriptive study gathered data through semi-structured telephone interviews with nurses from across Canada; cross sectional data from 2020 to 2021 is reported here. The study received ethical approval and all participants provided written consent. Findings Participants included nurses (n = 34) and nurse practitioners (n = 16) with significant experience with MAID. Participants described how MAID had transitioned from a new, secretive, and anxiety-producing procedure to one that was increasingly visible and normalized, although this normalization did not necessarily mitigate the emotional impact. MAID was becoming more accessible, and participants were learning to trust the process. However, the work was becoming increasingly complex, labour intensive, and often poorly remunerated. Although many participants described a degree of integration between MAID and palliative care services, there remained ongoing tensions around equitable access to both. Participants described an evolving gestalt of determining persons’ eligibility for MAID that required a high degree of clinical judgement. Deeming someone ineligible was intensely stressful for all involved and so participants had learned to be resourceful in avoiding this possibility. The required 10-day waiting period was difficult emotionally, particularly if persons worried about losing capacity to give final consent. The implementation of C-7 was perceived to be particularly challenging due to the nature of the population that would seek MAID and the resultant complexity of trying to address the origins of their suffering within a resource-strapped system. Conclusions Significant social and system calibration must occur to accommodate assisted death as an end-of-life option. The transition to offering MAID for those whose natural death is not reasonably foreseeable will require intensive navigation of a sometimes siloed and inaccessible system. High quality MAID care should be both relational and dialogical and those who provide such care require expert communication skills and knowledge of the healthcare system.
... Medical technology and health care, changing societal attitudes and individualisation have characterised the context of these debates (Weyers, 2006). Overall, the legal framework in the Netherlands is relatively transparent (Onwuteaka-Philipsen et al., 2012) -though this has not harmonised levels of acceptance of end-of-life decision making (Rietjens et al., 2005). To end one's life, one must confirm suffering and the loss of dignity. ...
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Autonomy and independence have become crucial elements of end-of-life decision making. Opinions on the latter are, however, strongly contested in public discourses. This contribution analyses arguments in favour of and against a Dutch civil society initiative which promotes the extension of the legislation on euthanasia. The authors investigate Dutch newspapers associated with three groups: religious, liberal and humanist perspectives, and do so by utilising quantitative and qualitative elements from a discourse-analytical perspective, raising the following questions: Which stances can be identified? How do different parties position themselves with regard to a ‘completed life’ and a ‘good death’? To what extent do these positions create demarcations between ‘us’ and ‘them’? The authors show that the debate developed along the lines of three key topoi: the topos of autonomy, the topos of human worth and the topos of embeddedness. The authors thereby identify how the different discursive positions define different visions of dying as ‘legitimate’ and as a proper end to a completed life.
... Certifying physicians of the sampled cases received a written questionnaire containing twenty-nine questions focussing on end-of-life decisions that might have preceded the death of the patient involved. This questionnaire was largely similar to previous mortality follow-back studies (Van der Maas et al., 1996;Onwuteaka-Philipsen et al., 2003;Van der Heide et al., 2007;Onwuteaka-Philipsen et al., 2012;Van der Heideet et al., 2012;Van der Maas et al., 1991). Amongst others, it contained questions about the underlying medical condition and whether the patient had requested PAD under the Dutch PAD law. ...
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In the Netherlands, people who wish to intentionally end their own life can request for physician assistance in dying (PAD). Having a classifiable medical condition is a prerequisite to receive PAD. Some people, either in the presence or absence of medical condition, choose to end life without assistance from a physician. This study estimates the frequency of people who intentionally ended their own life, and describes their demographic and medical characteristics through a nationwide mortality follow-back study based on questionnaires from certifying physicians of a stratified sample of death certificates of people drawn from the central death registry of Statistics Netherlands (n = 7277). In 1.85% of all deaths in 2015 people intentionally ended their own life; of which 0.50% by voluntarily stopping eating and drinking, 0.20% by self-ingesting self-collected medication, and 1.15% using other methods. Estimating the frequency of suicide is influenced by definitions and the information sources. The great majority of people who ended life by voluntarily stopping eating and drinking were over 80 years old and suffered from an accumulation of health problems related to old age, somatic problems, and/or dementia. People who ended their own life through other methods were mostly under 65 years old and primarily suffered from psychiatric, psychosocial and existential problems. Few people who intentionally ended their own life requested PAD, especially those who suffered from solely psychiatric diseases and those without a medical condition. PAD in the Netherlands is embedded in the medical domain as it is currently understood by Dutch law. This raises the question how to address the desire to die from people whose wish to intentionally end their own life is not rooted in a medical condition and therefore fall outside this medical framework of assistance in dying.
... Het sterfgevallenonderzoek 2010, uitgevoerd in opdracht van ZonMw, levert nog meer gegevens over de omstandigheden rond het levenseinde. 104 Twee derde van de euthanasiepatiënten was ouder dan 65 jaar. ...
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Mulder H, Olthuis G, Siebelink M, Gerritsen R, van Heurn E. Richtlijn ‘Orgaandonatie na euthanasie’ [Guideline 'Organ donation following euthanasia"]. Ned Tijdschr Geneeskd. 2017;161:D2135. Dutch. PMID: 29219798. https://pubmed.ncbi.nlm.nih.gov/29219798/ -------------------------------------------------------------------------------------------------------------- Part 1 of the guideline offers practical documents supporting the implementation of the combined procedure, for instance a general step-by-step plan, and checklists for the relevant care professionals and for the hospital. Forms are also available: for the family doctor to register his patient with the contact specialist and the forensic physician, for the patient to register his decision in favour of organ donation after euthanasia, and for the family doctor and the hospital to conclude a co-operation agreement. The step-by-step plan is given a solid basis in part 2 of the guideline. Moreover, part 2 contains background information about the realisation of the guideline and factual overviews of euthanasia and organ donation.
... Professionals help relatives to understand the decision of the person willing to die through VSED (theme 10). It is generally difficult to accept the death of a loved one. ...
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Background: Voluntary stopping eating and drinking (VSED) is an option for people wishing to bring about premature death. In Switzerland, VSED is considered a controversial action at the end of life in the guidelines for "Management of dying and death," which states that the decision to support or oppose VSED must be made individually by health care professionals; so far there are no instructions for action. The aim of this research was to explore the experiences of people who play an important role in VSED accompaniment, and to explain how the people involved in the process deal with VSED. Methods: This convergent mixed methods study included a national survey (n=1,681) and five focus group interviews (n=47). Data integration was conducted using the four-stage pillar integration process. Results: Given Swiss society interest, VSED has already established itself in the health system without the institutions having addressed the issue, whereupon health professionals make individual decisions when a person willing to die comes to them with a VSED wish. Health professionals are open to VSED, but are also ambivalent and would like to know more about it before being confronted with a VSED case. Conclusions: In Switzerland, VSED has become a rare but desired option for ending life prematurely. While health professionals are already being confronted with the phenomenon, there is a lack of discussion at the level of health institutions about how to deal with it.
... Above that, in the Netherlands, euthanasia or PAS is only possible when strict criteria are met and a physician can never be obliged to honour a euthanasia request. Examination of the total number of deaths by euthanasia in 2010 reveals that the percentage of HD patients is higher (12-21%) than the percentage in the general population and in patients with cancer (approximately 3 and 6% respectively) [18,[25][26][27]. Because of the position the Netherlands has when it comes to legislation of euthanasia, patients could be more inclined to draft up an advance euthanasia request instead of an advance directive for refusal of treatments. ...
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Background Huntington’s disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become lost as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). To improve ACP for HD patients, there is a need to better understand how these patients face their poor prognosis. Aim To gain insight into the views of HD patients who receive outpatient care regarding their future and the way they deal with the poor prognosis of their disease. Methods A qualitative study using semi-structured interviews with 12 patients with HD (7 outpatient clinic, 3 day care, 2 assisted living facility). Audio-recorded interviews were transcribed verbatim. Through reading and re-reading interviews, writing memos and discussions in the research team, strategies were identified. Results Three strategies emerged for facing a future with HD. Participants saw the future: 1) as a period that you have to prepare for; 2) as a period that you would rather not think about; 3) as a period that you do not have to worry about yet. Participants could adopt more than one strategy at a time. Even though participants realized that they would deteriorate and would need more care in the future, they tried to keep this knowledge ‘at a distance’, with the motivation of keeping daily life as manageable as possible. Conclusions Official ACP guidelines recommend discussing goals and preferences for future treatment and care, but patients tend to want to live in the present. Further research is needed to elucidate the best approach to deal with this discrepancy.
... The rational choice of bringing death forward by means of euthanasia or medically assisted suicide was an insurmountable legal problem in countries where these practices are not authorized, irrespective of the moral value that stakeholders attribute to this issue. It is noteworthy that the request to bring death forward in the present study (1.2%), which was carried out in Spain, is similar to that observed in countries where euthanasia is legal (0.7-2.8%) [35,36]. ...
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Purpose The main aim of this study was to determine the prevalence of ethical dilemmas in the end-of-life process in advanced cancer patients. Methods We carried out a multicenter, cross-sectional, observational, prospective study in a cohort of cancer patients whose life expectancy was ≤ 6 months. We recorded sociodemographic characteristics, diagnosis of cancer, symptom burden, cognitive and functional status, emotional impact, and sociofamilial risk factors. The main outcome measure was the detection of ethical dilemmas, based on the following definition: conflict in decision-making during the end-of-life process that involves the need to choose between morally acceptable opposing options, where none is clearly preferable to another. Results We included 324 patients (mean age, 69 years; 58% men). We identified 117 dilemmas in 90 patients (27.8%). The dilemmas detected were as follows: (a) conflicts of information (adaptive denial, conspiracy of silence, information exceeding patient’s desired limit), 15.7%; (b) discrepancies in proportionality (discussion on futility, rejection of treatment, withdrawal of life support measures), 16.7%; (c) unrealistic expectations about the outcome of clinical trials, 2.5%; and (d) request for euthanasia or medically assisted suicide, 1.2%. We observed a greater prevalence of ethical dilemmas in men, in patients receiving active cancer treatment, and in patients with emotional distress (p < 0.05). Conclusions The prevalence of ethical dilemmas during the end-of-life process in cancer patients is relevant. Most dilemmas were associated directly or indirectly with respect for patient autonomy. In this context, the communication skills of the health professionals and advanced care planning take on a key role.
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Slippery slope argument against physician’s assistance in dying is often used in ethical debates and even more often in public space. The essence of this argumentation is to show that acceptance of one truly right action must unavoidably lead to acceptance of one truly wrong action. It can be justified in two ways. Firstly, by showing an appropriate empirical data and secondly, by demonstrating that the distinction between two above mentioned actions is totally arbitrary and then presuming that this arbitrariness must lead to inefficiency of such border. This argument is used in inappropriate ways. First of all, it is used by people who think that both actions are wrong. They decided to use this argumentation in order to hide their real views (e.g. that suicide is immoral because of religious faith). Others have transform slippery slope argument into a very different one called “non-principled distinction”. This one was only mentioned in this article. Secondly, data collected by many studies has shown that there is no empirical slippery slope from the acceptance of physician’s assistance in dying to development of social pressure on vulnerable groups to ask for such procedures. Actually something the opposite: has been shown The excluded people have more difficult access to euthanasia or physician-assisted suicide.
Article
Although considerable gains in survival have been observed in developed countries, particularly in the last stretch of life, part of these additional years of life are lived in bad health. In this context, a number of actions/inactions that limit or may limit life span are becoming increasingly common. Demography and quantitative sociology are well‐positioned to make a significant contribution to the measurement of the consistency of different end‐of‐life interventions, to the examination of differences over time, space and among different social groups, and to the analysis of the behaviors and attitudes of different stakeholders (the sufferers, their relatives, health care personnel, public opinion). We focus here on euthanasia and assisted suicide (EAS). First, we discuss changes in public opinion on EAS in developed countries. Second, we analyze the diffusion and temporal trends of EAS, with a particular focus on Switzerland, the Netherlands, and Belgium; three countries for which it is also possible to consider the connections between the diffusion of EAS and palliative care. Third, we consider several differential aspects of the spread of EAS (mainly by sex, age, and cause of death).
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Background and Aims Euthanasia is a controversial issue related to the right to die. Although euthanasia is mostly requested by terminally sick individuals, even in societies where it is legal, it is unclear what medical conditions lead to euthanasia requests. In this scoping review, we aimed to compile medical conditions for which euthanasia has been requested or performed around the world. Methods The review was preferred reporting items for systematic reviews and meta‐analysis for scoping reviews (PRISMA‐ScR) checklist. Retrieved search results were screened and unrelated documents were excluded. Data on reasons for conducting or requesting euthanasia along with the study type, setting, and publication year were extracted from documents. Human development index and euthanasia legality were also extracted. Major medical fields were used to categorize reported reasons. Group discussions were conducted if needed for this categorization. An electronic search was undertaken in MEDLINE through PubMed for published documents covering the years January 2000 to September 2022. Results Out of 3323 records, a total of 197 papers were included. The most common medical conditions in euthanasia requests are cancer in a terminal phase (45.4%), Alzheimer's disease and dementia (19.8%), constant unbearable physical or mental suffering (19.8%), treatment‐resistant mood disorders (12.2%), and advanced cardiovascular disorders (12.2%). Conclusion Reasons for euthanasia are mostly linked to chronic or terminal physical conditions. Psychiatric disorders also lead to a substantial proportion of euthanasia requests. This review can help to identify the features shared by conditions that lead to performing or requesting euthanasia
Article
Importance There is limited literature on the exact causes and ways of death in patients with head and neck cancer. To provide optimal care, especially in the palliative phase, more information on this is needed. Objective To provide insights into the causes and ways of death among patients with head and neck cancer. Design, Setting, and Participants This retrospective cohort study included a consecutive population of patients who received a diagnosis of primary squamous cell carcinoma of the head and neck between January 2006 and December 2013 who were treated in the Erasmus MC. Patient data were merged with nonpublic microdata from Statistics Netherlands. Follow-up time was specified as the date of diagnosis until death or December 3, 2019, whichever came first. The data were checked and reanalyzed in November 2023. Main outcomes and Measures Causes (eg, head and neck cancer, other cancer) and ways (eg, natural death, suicide) of death. Results A total of 1291 patients (59.2%; 342 women [26.5%]) died during follow-up (median [IQR] follow-up, 2.7 [1.2-5.6] years). The main cause of death was head and neck cancer (557 [43.1%]), followed by the competing cause of other cancers (344 [26.6%]). In total, 240 patients (18.6%) received palliative sedation and 70 patients (5.4%) euthanasia. Compared with patients with head and neck cancer as the underlying cause of death, lower odds ratios (ORs) were observed for receiving palliative sedation (OR, 0.32 vs 0.07; 95% CI, 0.22-0.46 vs 0.03-0.12) and euthanasia (OR, 0.22 vs 0.01; 95% CI, 0.11-0.41 vs 0-0.107) in patients with other causes of death. Patients with a middle and high income had higher ORs for receiving palliative sedation (OR, 1.46 vs 1.86; 95% CI, 1.05-2.04 vs 1.22-2.85) or euthanasia (OR, 2.25 vs 3.37; 95% CI, 1.18-4.3, 1.6-7.12) compared with low-income patients. Retired patients had lower ORs for receiving palliative sedation or euthanasia compared with employed patients (OR, 0.56 vs 0.44; 95% CI, 0.39-0.8 vs 0.24-0.82). Conclusion and Relevance The results of this cohort study suggest that more than half of the patients died of competing causes and palliative sedation and euthanasia were more common in patients with head and neck cancer as the underlying cause of death. Patients with a higher socioeconomic status had higher odds of receiving palliative sedation and euthanasia. These insights may support health care professionals in providing patient-centered care, especially for patients in the palliative phase.
Article
Objective: To identify the neurological diseases for which euthanasia and assisted suicide are most frequently requested in the countries where these medical procedures are legal and the specific characteristics of euthanasia in some of these diseases, and to show the evolution of euthanasia figures. Methods: We conducted a systematic literature review. Results: Dementia, motor neuron disease, multiple sclerosis, and Parkinson's disease are the neurological diseases that most frequently motivate requests for euthanasia or assisted suicide. Requests related to dementia constitute the largest group, are growing, and raise additional ethical and legal issues due to these patients' diminished decision-making capacity. In some countries, the ratios of euthanasia requests to all cases of multiple sclerosis, motor neuron disease, or Huntington disease are higher than for any other disease. Conclusions: After cancer, neurological diseases are the most frequent reason for requesting euthanasia or assisted suicide.
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Bu çalışmada temel amaç, Türkiye toplumunun ötenaziye yönelik tutumlarını incelemek amacıyla bir ölçeğin geliştirilmesidir. Çalışmanın örneklemini gönüllü katılım sağlayan 18 yaş üstü 293 kişi oluşturmaktadır. Ölçek geliştirme sürecinde literatür taraması, örnek anket taslağının oluşturulması, uzman görüşünün alınması, pilot uygulama ve evrenden veri toplama şeklinde bir dizi aşamalar takip edilmiştir. Veriler, açıklayıcı faktör ve doğrulayıcı faktör analizleri ile değerlendirilmiştir. Verilerin analiz edilmesinde SPSS ve AMOS paket programı yararlanılmıştır. Açıklayıcı faktör analizi bulgularına göre ölçeğin 38 ifade ve 5 boyutta toplandığı görülmüştür. Ölçek ve alt boyutlarının güvenirlik katsayılarının iyi ve yeterli düzeyde olduğu saptanmıştır. Doğrulayıcı faktör analizinde ölçek uyum düzeylerinin iyi düzeyde olduğu saptanmıştır. Ayrıca madde yük değerlerinin yeterli düzeyde olduğu tespit edilmiştir. Diğer yandan CR ve AVE değerlerinin istenen düzeyde olmasından dolayı modelin geçerli olduğu görülmüştür. Ötenaziye yönelik toplumun tutumunu belirlemek amacıyla geliştirilen ölçeğin geçerli ve güvenilir olduğu tespit edilmiştir. Ölçeğin 38 ifade ve olumlu tutum, olumsuz tutum, cezai tutum, çıkarcı tutum ve kültürel tutum olmak üzere beş farklı boyuttan oluştuğu sonucuna varılmıştır.
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Background In most jurisdictions where assisted dying practices are legal, attending physicians must consult another practitioner to assess the patient's eligibility. Consequently, in some jurisdictions, they can rely on the expertise of trained assisted dying consultants (trained consultants). However, these peer consultations remain under-researched. We examined the characteristics and outcomes of peer consultations to assess an assisted dying request with trained consultants, and explored how these characteristics influence the performance of assisted dying. Methods We conducted a cross-sectional survey in 2019–2020 in Belgium among attending physicians who had consulted a trained consultant for an assisted dying request assessment (N = 904). Results The valid response rate was 56% (502/903). The vast majority of attending physicians (92%) who had consulted a trained consultant were general practitioners. In more than half of the consultations (57%), the patient was diagnosed with cancer. In 66%, the patient was aged 70 or older. Reported as the patients' most important reasons to request assisted dying: suffering without prospect of improving in 49% of the consultations, loss of dignity in 11%, pain in 9%, and tiredness of life in 9%. In the vast majority of consultations (85%), the attending physician consulted the trained consultant because of the expertise, and in nearly half of the consultations (46%) because of the independence. In more than nine out of ten consultations (91%), the consultant gave a positive advice: i.e., substantive requirements for assisted dying were met. Eight out of ten consultations were followed by assisted dying. The likelihood of assisted dying was higher in consultations in which loss of dignity, loss of independence in daily living, or general weakness or tiredness were reasons for the request. Conclusion Our findings indicate that the peer consultation practice with trained consultants is most often embedded in a primary care setting. Moreover, our study corroborates previous research in that assisted dying is performed relatively less frequently in patients with cancer and more often in patients with general deterioration. Our findings suggest that attending physicians hold peer consultations with trained consultants to endorse their own decision-making and to request additional support.
Article
Objectives Official data reports from countries where assisted suicide and euthanasia is legal are an important resource for discerning participation rates, patient safety and transparency in the way that assisted dying is legal. We aimed to identify what information is published in official data reports on assisted suicide and euthanasia across jurisdictions. Methods We searched for official data reports from every jurisdiction where assisted suicide or euthanasia is legal. Searches were conducted on these countries’ official health authority websites as well as on mainstream search engines. The data measures included within each report were described in four categories: participation data, patient characteristics, clinician characteristics, and drugs and dying process. Results We found that 16 jurisdictions where assisted suicide or euthanasia is currently legal regularly publish data reports regarding its practice. The information included within these official reports varies greatly, with few measures published across all or most jurisdictions. Conclusions Differences in the kinds of information published within official reports on assisted suicide and euthanasia makes comparing the practice of assisted suicide and euthanasia across jurisdictions challenging. Many jurisdictions fail to report data measures, which could be valuable to the understanding of assisted suicide and euthanasia practices within that country. Improving data reporting across jurisdictions where assisted suicide and euthanasia is legal, for example, through establishing minimum requirements for data collection and reporting, is an important step towards ensuring patient safety and the transparent practice of assisted suicide and euthanasia.
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Euthanasia legalization in Islamic societies is still under debate. Iran is an Islamic country and the values of Iran’s society are rooted in Islamic beliefs. In the present study, we decided to have a narrative-literature review on euthanasia in Iran, as a religious country. For the mentioned purpose, literature search was performed on Google Scholar and PubMed in order to elicit all the possible data. Results were limited to research on euthanasia in Iran. Articles were then analyzed using the narrative review process. Euthanasia research which included patients’ data were assessed for ethics committee approval. After the mentioned procedure, a total of 17 documents were retrieved. All of the retrieved research projects were conducted to assess the attitude toward euthanasia and its acceptability by proper questionnaire. A survey on the retrieved documents determined that Iran’s society have not yet supported the legitimacy of euthanasia as a social demand. However, it is essential to perform more research projects on various aspects of euthanasia such as do not resuscitate (DNR).
Article
Objectives To study changes in the peer consultation practice of assessing assisted dying requests and its quality among trained ‘Life End Information Forum’ (LEIF) consultants in Belgium between 2008 and 2019. Methods Cross-sectional surveys conducted in 2008 (N=132) and 2019 (N=527) among all registered LEIF consultants. Results The response rate was 75% in 2008 and 57% in 2019. In 2019 compared with 2008, more LEIF consultants were significantly less than 40 years old (25%/10%, p=0.006) and at least 60 years old (34%/20%, p=0.006). In their activities regarding assessments of assisted dying requests over 12 months, we found a significant increase in the number of patients who did not meet the substantive requirements for assisted dying in 2019 compared with 2008 (1–4 patients: 41.1 %/58.8%, p=0.020). In their most recent assessments of an assisted dying request, LEIF consultants in 2019 made significantly more assessments of patients aged 80 years or older than in 2008 (31%/9%, p<0.001), and significantly fewer assessments for patients with cancer (53%/70%, p=0.034). Regarding adherence to quality criteria for consultation, LEIF consultants discussed unbearable suffering (87%/65%, p=0.003) and alternative treatments (palliative: 48 %/13%, p<0.001; curative: 28%/5%, p=0.002) significantly more often with the attending physician. Conclusions Changes in peer consultation practice and its quality among LEIF consultants likely reflect changes in assisted dying practice in general, as well as changes in LEIF consultations on more complex cases for which LEIF consultants’ expertise is required.
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Euthanasia has been a contentious issue in South Africa and around the world for a long time. Despite some request for the decriminalisation of euthanasia in South Africa, it remains an illegal and a criminal offence in terms of South African Common Law. This means that anyone who is found assisting or having assisted a patient to take his/her own life will be guilty of murder. Despite challenges regarding the decriminalisation of euthanasia in South Africa, this study demonstrates how other constitutional rights can be used to make a case for euthanasia in general and also the right to dignity. The study analyses how courts in Canada and the Netherlands used the right to dignity to make a case for the decriminalisation of euthanasia and it shows which lessons can be drawn from the two jurisdictions as well as the jurisprudence of the Human Rights Committee of the ICCPR. This study further provides a recommendation for South Africa to adopt law that will regulate euthanasia and curb possible abuse that can emanate from cases of euthanasia. To this end, among other things, the study recommends that the proposed law should address issues of how the consent of the patient will be achieved, the state of health of the patient, the role and presence of witnesses and the monitoring and evaluation of the process. KEY TERMS: Euthanasia; Assisted suicide; Terminal illness; Dignity; Life; Right to die; Human Rights; Equality, South Africa, Legalisation.
Chapter
Medizinethik fragt nach dem moralisch Gesollten, Erlaubten und Zulässigen im Umgang mit menschlicher Krankheit, Gesundheit und angrenzenden medizinischen Tätigkeitsfeldern. Von der Antike bis in die Mitte des vergangenen Jahrhunderts stand im Zentrum der Medizinethik das, was Ärzte zum Wohle ihrer Patienten tun oder nicht tun sollten. Medizinethik wurde überwiegend im Sinne einer Fürsorgeethik innerhalb der ärztlichen Zunft betrieben. Im Laufe der Zeit wandelte sich die Medizinethik von einer intraprofessionellen Fürsorgeethik zu einem multiprofessionellen Gebiet der angewandten Ethik, in dem neue Herausforderungen im Rahmen einer pluralistischen Gesellschaft zu tragfähigen, guten Lösungen geführt werden müssen. Insbesondere im Bereich der Palliativversorgung, in der immer wieder schwierige – mitunter auch im Team kontrovers diskutierte – Entscheidungen zu treffen sind, ist es sinnvoll die wichtigsten Grundsätze der Ethik zu kennen, um zu einem für alle Beteiligten tragfähigen Ergebnis zu kommen.
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This study examines the goals of medical aid-in-dying (MAID) legislation introduced to the US Congress from 1994–2020 using a policy mapping analysis approach. Using congress.gov, we identified 98 bills, 23 bills were analyzed in this study. Most of the bills aimed to restrict the use of federal funds, to regulate the drugs commonly used for MAID, to prohibit the development of policies or practices supporting MAID, and to regulate practitioners’ roles in MAID. In practice, these bills would limit patient access to MAID by restricting drugs, funds, health care services, legal assistance, policy, and research. These findings suggest there lacks congressional support for MAID, even though polls of the public are divided yet favorable. Policymakers who support MAID should consider affirmative policies that 1) prevent MAID policies from discriminating against vulnerable groups, 2) support funding to study the use of MAID, and 3) build avenues to allow all qualified people to access MAID in places where it is legal.
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Resumen Objetivo Identificar las enfermedades neurológicas por las que con mayor frecuencia se solicita la eutanasia y el suicidio asistido en los países donde están legalizados, las particularidades de la eutanasia en algunas de ellas y mostrar la evolución de sus cifras. Métodos Revisión bibliográfica sistemática. Resultados Las demencias, enfermedad de motoneurona, esclerosis múltiple y enfermedad de Parkinson son las enfermedades neurológicas que más frecuentemente motivan la petición de eutanasia o suicidio asistido. Las solicitudes por demencia son las más numerosas, están creciendo y plantean problemas éticos y legales adicionales al disminuir la capacidad de decisión. En algunos países la proporción de solicitudes respecto al total de casos de esclerosis múltiple, enfermedad de motoneurona o enfermedad de Huntington es mayor que en cualquier otra enfermedad. Conclusiones Después del cáncer las enfermedades neurológicas son el motivo más frecuente de pedir la eutanasia y el suicidio asistido.
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Een 51-jarige vrouw met een uitbehandeld, gemetasta-seerd mammacarcinoom is recent ontslagen van de afdeling Medische Oncologie, waar zij was opgenomen voor dyspneu bij bekende lymfangitis en niet-draineer-bare pleuritis carcinomatosa. Ze is verder bekend met COPD en diabetes mellitus type 1, waarvoor ze kort-werkende en langwerkende insuline gebruikt. Vanwege progressieve dyspneu is ze nu opnieuw opgenomen. Zij is volledig bedlegerig en eet en drinkt nauwelijks meer. Behandeling met zuurstofsuppletie, vernevelingen, een hoge dosis dexamethason, furosemide en continu morfine subcutaan was in het begin effectief, maar is nu onvoldoende om de dyspneu te bestrijden. De dys-pneu is daarmee een onbehandelbaar ziekteverschijn-sel (refractair symptoom) en uiteindelijk wordt beslo-ten over te gaan tot palliatieve sedatie met continu midazolam subcutaan. Dit leidt tot enkele vragen: zijn er middelen die patiënte gebruikt die een interactie geven met het sedativum midazolam? Wat is het effect van behandeling met glucocorticoïden op de bloedcon-centratie van midazolam? Moet dexamethason worden gecontinueerd? Wat te doen met furosemide tijdens palliatieve sedatie? En hoe zit dit bij glucoseverlagende medicatie? B ij palliatieve zorg staat de kwaliteit van leven van patiënten centraal. Palliatieve sedatie is als laatste keuze geïndiceerd bij patiënten in de terminale fase bij wie sprake is van ondraaglijk lijden door één of meerdere refractaire symptomen en die stervende zijn of een levensverwachting < 2 weken hebben. Hierbij wordt Palliatieve sedatie is een behandeloptie voor patiënten in de terminale fase van hun ziekte bij wie één of meer refrac-taire symptomen bestaan. Bij het toepassen van palliatieve sedatie is het van belang rekening te houden met de farmacokinetische en-dynami-sche eigenschappen van geneesmiddelen die bijdragen aan goede palliatie; het gaat hierbij om zowel de medicatie die gebruikt wordt voor de palliatieve sedatie als de gecontinueerde chronische medicatie. Dit artikel geeft handvatten voor de klinische praktijk rond het saneren en continueren van chronische medicatie en over verschillende interacties tussen medicamenten tijdens de palliatieve sedatie. Radboudumc, Nijmegen.
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Background The annual incidence of euthanasia in the Netherlands as a percentage of all deaths rose from 1.9% in 1990 to 4.4% in 2017. Scarce literature on regional patterns calls for more detailed insight into the geographical variation in euthanasia and its possible explanations. Objectives This paper (1) shows the geographical variation in the incidence of euthanasia over time (2013–2017); (2) identifies the associations with demographic, socioeconomic, preferential and health-related factors; and (3) shows the remaining variation after adjustment and discusses its meaning. Design, setting and methods This cross-sectional study used national claims data, covering all healthcare claims during 12 months preceding the death of Dutch insured inhabitants who died between 2013 and 2017. From these claims all euthanasia procedures by general practitioners were selected (85% of all euthanasia cases). Rates were calculated and compared at three levels: 90 regions, 388 municipalities and 196 districts in the three largest Dutch cities. Data on possibly associated variables were retrieved from national data sets. Negative binomial regression analysis was performed to identify factors associated with geographical variation in euthanasia. Results There is considerable variation in euthanasia ratio. Throughout the years (2013–2017) the ratio in the three municipalities with the highest incidence was 25 times higher than in the three municipalities with the lowest incidence. Associated factors are age, church attendance, political orientation, income, self-experienced health and availability of voluntary workers. After adjustment for these characteristics a considerable amount of geographical variation remains (factor score of 7), which calls for further exploration. Conclusion The Netherlands, with 28 years of legal euthanasia, experiences large-scale unexplained geographical variation in the incidence of euthanasia. Other countries that have legalised physician-assisted dying or are in the process of doing so may encounter similar patterns. The unexplained part of the variation may include the possibility that part of the euthanasia practice may have to be understood in terms of underuse, overuse or misuse.
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Zusammenfassung Hintergrund Aktive Sterbehilfe und ärztlich assistierter Suizid werden in Deutschland kontrovers diskutiert. Empirische Studien fehlen, um ihr jeweiliges Vorkommen, einschließlich dem von passiver und indirekter Sterbehilfe, in deutschen Krankenhäusern einschätzen zu können. Ärztinnen und Ärzte sowie Pflegerinnen und Pfleger in deutschen Krankhäusern wurden zu ihrer Anwendung von Sterbehilfe befragt und mögliche Einflussfaktoren erhoben. Methode Angaben zu Sterbehilfe wurden mit deskriptiven Begriffen und zugeordneten Definitionen in einer anonymen Online-Befragung erhoben. Die objektive und subjektive Arbeitssituation der Befragten und ihre Befürwortung von aktiver Sterbehilfe wurden erfasst. Die finale ärztliche Stichprobe umfasste n = 2507, die pflegerische Stichprobe umfasste n = 2683 Personen. Ergebnis Die Anwendung von passiver und indirekter Sterbehilfe innerhalb von 24 Monaten wurde von einem großen Anteil der ärztlichen und pflegerischen Befragten angegeben, aktive Sterbehilfe und assistierter Suizid von deutlich weniger Befragten. Die Varianz in der Anwendung von aktiver Sterbehilfe wurde u. a. durch mehrere arbeitsbezogene Faktoren und die jeweilige Befürwortung von aktiver Sterbehilfe beeinflusst, nicht aber durch subjektive Belastungsfaktoren. Schlussfolgerung Sterbehilfe wird durch ärztliche und pflegerische Mitarbeiterinnen und Mitarbeiter in deutschen Krankenhäusern praktiziert. Das Vorkommen unterschiedlicher Formen von Sterbehilfe und relevante Einflussfaktoren werden vor dem Hintergrund methodischer Limitationen diskutiert.
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Understanding why some terminally ill patients desire a hastened death has become an important issue in palliative care and the debate regarding legalization of assisted suicide. To assess the prevalence of desire for hastened death among terminally ill cancer patients and to identify factors corresponding to desire for hastened death. Design Prospective survey conducted in a 200-bed palliative care hospital in New York, NY. Ninety-two terminally ill cancer patients (60% female; 70% white; mean age, 65.9 years) admitted between June 1998 and January 1999 for end-of-life care who passed a cognitive screening test and provided sufficient data to permit analysis. Scores on the Schedule of Attitudes Toward Hastened Death (SAHD), a self-report measure assessing desire for hastened death among individuals with life-threatening medical illness. Sixteen patients (17%) were classified as having a high desire for hastened death based on the SAHD and 15 (16%) of 89 patients met criteria for a current major depressive episode. Desire for hastened death was significantly associated with a clinical diagnosis of depression (P=.001) as well as with measures of depressive symptom severity (P<.001) and hopelessness (P<.001). In multivariate analyses, depression (P=.003) and hopelessness (P<.001) provided independent and unique contributions to the prediction of desire for hastened death, while social support (P=.05) and physical functioning (P=.02) added significant but smaller contributions. Desire for hastened death among terminally ill cancer patients is not uncommon. Depression and hopelessness are the strongest predictors of desire for hastened death in this population and provide independent and unique contributions. Interventions addressing depression, hopelessness, and social support appear to be important aspects of adequate palliative care, particularly as it relates to desire for hastened death.
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Euthanasia or assisted suicide-and sometimes both-have been legalized in a small number of countries and states. In all jurisdictions, laws and safeguards were put in place to prevent abuse and misuse of these practices. Prevention measures have included, among others, explicit consent by the person requesting euthanasia, mandatory reporting of all cases, administration only by physicians (with the exception of Switzerland), and consultation by a second physician.The present paper provides evidence that these laws and safeguards are regularly ignored and transgressed in all the jurisdictions and that transgressions are not prosecuted. For example, about 900 people annually are administered lethal substances without having given explicit consent, and in one jurisdiction, almost 50% of cases of euthanasia are not reported. Increased tolerance of transgressions in societies with such laws represents a social "slippery slope," as do changes to the laws and criteria that followed legalization. Although the initial intent was to limit euthanasia and assisted suicide to a last-resort option for a very small number of terminally ill people, some jurisdictions now extend the practice to newborns, children, and people with dementia. A terminal illness is no longer a prerequisite. In the Netherlands, euthanasia for anyone over the age of 70 who is "tired of living" is now being considered. Legalizing euthanasia and assisted suicide therefore places many people at risk, affects the values of society over time, and does not provide controls and safeguards.
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Belgium legalized euthanasia in 2002. Physicians must report each euthanasia case to the Federal Control and Evaluation Committee. This study examines which end-of-life decisions (ELDs) Belgian physicians label 'euthanasia', which ELDs they think should be reported and the physician characteristics associated with correct labelling of euthanasia cases, the awareness that they should be reported and the reporting of them. Five hypothetical cases of ELDs: intensified pain alleviation, palliative/terminal sedation, euthanasia with neuromuscular relaxants, euthanasia with morphine and life-ending without patient request were presented in a cross-sectional survey of 914 physicians in Belgium in 2009. About 19% of physicians did not label a euthanasia case with neuromuscular relaxants 'euthanasia', 27% did not know that it should be reported. Most physicians labelled a euthanasia case with morphine 'intensification of pain and symptom treatment' (39%) or 'palliative/terminal sedation' (37%); 21% of physicians labelled this case 'euthanasia'. Cases describing other ELDs were sometimes also labelled 'euthanasia'. Factors associated with a higher likelihood of labelling a euthanasia case correctly were: living in Flanders, being informed about the euthanasia law and having a positive attitude towards societal control over euthanasia. Whether a physician correctly labelled the euthanasia cases strongly determined their reporting knowledge and intentions. There is no consensus among physicians about the labelling of euthanasia and other ELDs, and about which cases must be reported. Mislabelling of ELDs could impede societal control over euthanasia. The provision of better information to physicians appears to be necessary.
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Despite receiving state-of-the-art palliative care, some patients still experience severe suffering toward the end of life. Palliative sedation is a potential way to respond to such suffering, but access is uneven and unpredictable, in part because of confusion about different kinds of sedation. Proportionate palliative sedation (PPS) uses the minimum amount of sedation necessary to relieve refractory physical symptoms at the very end of life. To relieve suffering may require progressive increases in sedation, sometimes to the point of unconsciousness, but consciousness is maintained if possible. Palliative sedation with the intended end point of unconsciousness (PSU) is a more controversial practice that may be considered for much fewer refractory cases. There is more ethical consensus about PPS than PSU. In this article, the authors explore the clinical, ethical, and legal issues associated with these practices. They recommend that palliative care and hospice programs develop clear policies about PPS and PSU, including mechanisms for training and ensuring competency for clinicians, and approaching situations where individuals or institutions may conscientiously object.
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In 1991 a new procedure for reporting physician-assisted deaths was introduced in the Netherlands that led to a tripling in the number of reported cases. In 1995, as part of an evaluation of this procedure, a nationwide study of euthanasia and other medical practices concerning the end of life was begun that was identical to a study conducted in 1990. We conducted two studies, the first involving interviews with 405 physicians (general practitioners, nursing home physicians, and clinical specialists) and the second involving questionnaires mailed to the physicians attending 6060 deaths that were identified from death certificates. The response rates were 89 percent and 77 percent, respectively. Among the deaths studied, 2.3 percent of those in the interview study and 2.4 percent of those in the death-certificate study were estimated to have resulted from euthanasia, and 0.4 percent and 0.2 percent, respectively, resulted from physician-assisted suicide. In 0.7 percent of cases, life was ended without the explicit, concurrent request of the patient. Pain and symptoms were alleviated with doses of opioids that may have shortened life in 14.7 to 19.1 percent of cases, and decisions to withhold or withdraw life-prolonging treatment were made in 20.2 percent. Euthanasia seems to have increased in incidence since 1990, and ending of life without the patient's explicit request to have decreased slightly. For each type of medical decision except those in which life-prolonging treatment was withheld or withdrawn, cancer was the most frequently reported diagnosis. Since the notification procedure was introduced, end-of-life decision making in the Netherlands has changed only slightly, in an anticipated direction. Close monitoring of such decisions is possible, and we found no signs of an unacceptable increase in the number of decisions or of less careful decision making.
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This article discusses the latest developments regarding euthanasia and palliative care in The Netherlands. On the one hand, a legally codified practice of euthanasia has been established. On the other hand, there has been a strong development of palliative care. The combination of these simultaneous processes seems to be rather unique. This contribution first focuses on these remarkable developments. Subsequently, the analysis concentrates on the question of how these new developments have influenced the ethical debate.
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In 2002, an act regulating the ending of life by a physician at the request of a patient with unbearable suffering came into effect in the Netherlands. In 2005, we performed a follow-up study of euthanasia, physician-assisted suicide, and other end-of-life practices. We mailed questionnaires to physicians attending 6860 deaths that were identified from death certificates. The response rate was 77.8%. In 2005, of all deaths in the Netherlands, 1.7% were the result of euthanasia and 0.1% were the result of physician-assisted suicide. These percentages were significantly lower than those in 2001, when 2.6% of all deaths resulted from euthanasia and 0.2% from assisted suicide. Of all deaths, 0.4% were the result of the ending of life without an explicit request by the patient. Continuous deep sedation was used in conjunction with possible hastening of death in 7.1% of all deaths in 2005, significantly increased from 5.6% in 2001. In 73.9% of all cases of euthanasia or assisted suicide in 2005, life was ended with the use of neuromuscular relaxants or barbiturates; opioids were used in 16.2% of cases. In 2005, 80.2% of all cases of euthanasia or assisted suicide were reported. Physicians were most likely to report their end-of-life practices if they considered them to be an act of euthanasia or assisted suicide, which was rarely true when opioids were used. The Dutch Euthanasia Act was followed by a modest decrease in the rates of euthanasia and physician-assisted suicide. The decrease may have resulted from the increased application of other end-of-life care interventions, such as palliative sedation.
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To analyse legislation and medical professional positions concerning the doctor's role in assisted dying in western Europe, and to discuss their implications for doctors. This paper is based on country-specific reports by experts from European countries where assisted dying is legalised (Belgium, The Netherlands), or openly practiced (Switzerland), or where it is illegal (Germany, Norway, UK). Laws on assisted dying in The Netherlands and Belgium are restricted to doctors. In principle, assisted suicide (but not euthanasia) is not illegal in either Germany or Switzerland, but a doctor's participation in Germany would violate the code of professional medical conduct and might contravene of a doctor's legal duty to save life. The Assisted Dying for the Terminally Ill Bill proposed in the UK in 2005 focused on doctors, whereas the Proposal on Assisted Dying of the Norwegian Penal Code Commission minority in 2002 did not. Professional medical organisations in all these countries except The Netherlands maintain the position that medical assistance in dying conflicts with the basic role of doctors. However, in Belgium and Switzerland, and for a time in the UK, these organisations dropped their opposition to new legislation. Today, they regard the issue as primarily a matter for society and politics. This "neutral" stance differs from the official position of the Royal Dutch Medical Association which has played a key role in developing the Dutch practice of euthanasia as a "medical end-of-life decision" since the 1970s. A society moving towards an open approach to assisted dying should carefully identify tasks to assign exclusively to medical doctors, and distinguish those possibly better performed by other professions.
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To examine how physicians' life stances affect their attitudes to end-of-life decisions and their actual end-of-life decision-making. Practising physicians from various specialties involved in the care of dying patients in Belgium, Denmark, The Netherlands, Sweden, Switzerland and Australia received structured questionnaires on end-of-life care, which included questions about their life stance. Response rates ranged from 53% in Australia to 68% in Denmark. General attitudes, intended behaviour with respect to two hypothetical patients, and actual behaviour were compared between all large life-stance groups in each country. Only small differences in life stance were found in all countries in general attitudes and intended and actual behaviour with regard to various end-of-life decisions. However, with regard to the administration of drugs explicitly intended to hasten the patient's death (PAD), physicians with specific religious affiliations had significantly less accepting attitudes, and less willingness to perform it, than non-religious physicians. They had also actually performed PAD less often. However, in most countries, both Catholics (up to 15.7% in The Netherlands) and Protestants (up to 20.4% in The Netherlands) reported ever having made such a decision. The results suggest that religious teachings influence to some extent end-of-life decision-making, but are certainly not blankly accepted by physicians, especially when dealing with real patients and circumstances. Physicians seem to embrace religious belief in a non-imperative way, allowing adaptation to particular situations.
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Achieving adequate but not excessive sedation in critically ill, mechanically ventilated patients is a complex process. Analgesics and sedatives employed in this context are extremely potent, and drug requirements and metabolism are unpredictable. Clinicians must have heightened awareness of the potential for enduring effects and are encouraged to employ strategies that maximize benefit while minimizing risk. Successful sedation protocols have three basic components: frequent assessments for pain, anxiety, and agitation using a reproducible scale; combination therapy coupling opioids and sedatives; and, most importantly, careful communication between team members, with a particular recognition that the bedside nurse must be empowered to pair assessments with drug manipulation. In recent years, two broad categories of sedation protocols have achieved clinical success in terms of decreasing duration of mechanical ventilation and intensive care unit length of stay by minimizing drug accumulation. Patient-targeted sedation protocols (the first category) rely on structured assessments to guide a careful schema of titrated drug escalation and withdrawal. Variation exists in the assessment tool utilized, but the optimal goal in all strategies is a patient who is awake and can be readily examined. Alternatively, daily interruption of continuous sedative infusions (the second category) may be employed to focus care providers on the goal of achieving a period of awakening in the earliest phases of critical illness possible. Newer literature has focused on the safety of this strategy and its comparison with intermittent drug administration. Ongoing investigations are evaluating the broad applicability of these types of protocols, and currently one may only speculate on whether one strategy is superior to another.
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Published simultaneously in Ann Intern Med 2002; 136: 243–46.
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Recently, a law on euthanasia has been adopted in both the Netherlands and Belgium. In both countries euthanasia has been legalised under strict conditions and after confirmation with a notification procedure. Although both laws are similar, the Belgian law is more extensive on the requirements of prudent practice. On the other hand, in the Dutch society the norm setting on euthanasia has been more widely developed through jurisprudence. Nevertheless, we expect that the medical implementation of the new law and the notification procedure in Belgium will be more difficult than in the Netherlands. In order to promote, safeguard and guarantee the quality of the euthanasia practice, the present euthanasia notification procedure in the Netherlands is supplemented with feedback to the physicians. The strictly anonymous procedure in the Belgian notification procedure prevents this possibility. Therefore, Belgian physicians will not be aided by the notification procedure to improve their knowledge and skills in euthanasia. In Belgium, it is still uncertain whether and how this law will be supported by the medical profession and by the medical schools.
Article
To date, in three European countries and three American states--i.e., The Netherlands, Luxemburg, Switzerland, and the states of Oregon, Washington and Montana--it is permitted by law for one person to assist in the suicide of another person. When comparing the legislations of these countries/states, it becomes apparent that The Netherlands, Luxemburg, Oregon, Washington and Montana have chosen a medical approach (the so-called medical model), whereas the Swiss legal framework for assisted suicide is clearly a non-medical one (the demedicalised model). The differences between these two models mainly concern two aspects: the requirement as to the capacity of the person providing assistance in suicide and the condition regarding the state of health of the person committing suicide. A closer view on the practice of assisted suicide in the depenalising countries shows that the differences are smaller than initially thought. Nevertheless, important distinctions still remain. When analysing which model is most preferable, it is concluded that an involvement of a physician is inevitable and necessary and that the requirement of a certain medical condition is needed to set a clear and objective limit.
Article
To investigate why physicians label end-of-life acts as either 'euthanasia/ending of life' or 'alleviation of symptoms/palliative or terminal sedation', and to study the association of such labelling with intended reporting of these acts. Questionnaires were sent to a random, stratified sample of 2100 Dutch physicians (response: 55%). They were asked to label six hypothetical end-of-life cases: three 'standard' cases and three cases randomly selected (out of 47), that varied according to (1) type of medication, (2) physician's intention, (3) type of patient request, (4) patient's life expectancy and (5) time until death. We identified the extent to which characteristics of cases are associated with physician's labelling, with multilevel multivariable logistic regression. The characteristics that contributed most to labelling cases as 'euthanasia/ending of life' were the administration of muscle relaxants (99% of these cases were labelled as 'euthanasia/ending of life') or disproportional morphine (63% of these cases were labelled accordingly). Other important factors were an intention to hasten death (54%) and a life expectancy of several months (46%). Physicians were much more willing to report cases labelled as 'euthanasia' (87%) or 'ending of life' (56%) than other cases. Similar cases are not uniformly labelled. However, a physicians' label is strongly associated with their willingness to report their acts. Differences in how physicians label similar acts impede complete societal control. Further education and debate could enhance the level of agreement about what is physician-assisted dying, and thus should be reported, and what not.
Article
Extract of the first 100 words of the full text and any section headings (as provided by publisher): The legalization of physician-assisted death for terminally ill patients is a controversial medical and societal issue.1 In Belgium, where euthanasia was legalized in 2002, we conducted a follow-up study in 2007 to two large-scale nationwide surveys on medical end-of-life practices that had been conducted in 19982 and 2001.3 This follow-up study enabled us to investigate differences in the frequency and characteristics of these practices before and after the enactment of the law.
Article
To test if care to relief suffering in patients with dementia who become ill with pneumonia is improving, we compared treatments in cohorts of patients with dementia and pneumonia a decade apart. We studied 61 nursing homes in The Netherlands between 1996-1998 and 54 nursing homes between 2006-2007, 53 of which had been in the earlier cohort. In 1996-1998, 706 patients with pneumonia and dementia were prospectively enrolled by 201 physicians and in 2006-2007, 72 patients by 69 physicians. Data collected included treatment, physician and patient characteristics, outcome, and additionally, in the 2006-2007 cohort only, physicians' perception of changes in treatment they generally provide. The frequency of providing antibiotics was similar: 79% in the recent cohort versus 77% ten years earlier (p = 0.63) as was oral antibiotic treatment (91% of those receiving antibiotics versus 88%; p = 0.44). Treatment to relieve symptoms was provided more frequently in the more recent cohort. For example, antipyretics (54% versus 34%; p = 0.001), oxygen (29% versus 13%; p < 0.001), and opiates (22% versus 10%; p = 0.003). Differences were not explained by different case mix. Half of physicians (49%) stated they generally treat to relieve symptoms more frequently than before. Symptom relief to Dutch patients with dementia and pneumonia is provided more frequently than a decade ago while the rate of treatment with antibiotics is unchanged. Further studies in The Netherlands and elsewhere are needed to detect if this is a general trend.
Article
Physicians may hasten death by medical decisions to end life (MDEL) that have been extensively researched. However, outside the medical domain, some individuals hasten their death by Voluntary Refusal of Food and Fluid while receiving some palliative care (VRFF) or by Independently taking Lethal Medication attended by a Confidant (ILMC). Both dying trajectories are more or less under the control of the individuals themselves. No survey data are available on how often these self-directed deaths occur in the Dutch population. We have isolated VRFF and ILMC from other dying trajectories in a population-based study employing after-death interviews with relatives, friends or nurses. Members of a research database that is representative of the Dutch population (n=31,516) were asked whether they had been a confidant in someone's decision to hasten death by VRFF or ILMC. In this sample, 144 deaths that conformed to our definitions were reported by proxies. We have computed an annual frequency of 2.1% VRFF deaths and of 1.1% ILMC deaths. The annual frequencies of VRFF and ILMC appear to be roughly the same as the yearly frequency of physician-assisted dying (1.8%). In seventy percent of those who had died by VRFF or ILMC, a diagnosis of cancer or a serious illness was reported by the informant. The proxies retrospectively described the self-directed hastening of death by both methods as a dignified death in about 75% of deaths. Both VRFF and ILMC require strenuous efforts and reflect a strong desire to control the process of dying. End-of-life research has shown that some control over the time of death is an important aspect of a 'good death' in western countries. We therefore presume that these self-directed methods for hastening death in consultation with proxies occur in other countries as well.
Article
This study estimates the frequency of different medical end-of-life decisions (ELDs) made in the United Kingdom (UK) in 2007-2008, comparing these with 2004. Postal survey was carried out with 8857 medical practitioners, of whom 3733 (42%) practitioners replied, with 2869 having attended a person who died in the previous year. The proportion of UK deaths involving (1) voluntary euthanasia (0.21%; CI: 0-0.52), (2) physician-assisted suicide (0.00%) and (3) ending of life without an explicit request from the patient (0.30%; CI: 0-0.60) is low. Better questions about ELDs showed both non-treatment decisions (21.8%; CI: 19.0-24.5) and double effect measures (17.1%; CI: 14.6-19.6) to be much less common than suggested in earlier estimates, rarely involving intent to end life or being judged to have shortened life by more than a day. Continuous deep sedation (16.5%; CI: 14.3-18.7) is relatively common in UK medical practice, particularly in hospitals, home care settings and with younger patients. Further findings about the distribution of ELDs across subgroups are also reported. Survey research in this area requires careful control over question wording if valid estimates and comparisons of the prevalence of ELDs are to be made. The high rate of sedation compared with other countries may be a cause for concern.
Article
We not only own our bodies, we are our bodies. Can we simply alienate parts of them? Both a theology of stewardship and the principle of self-ownership would seem to permit or even encourage us to do this.
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This article presents the first results of the Dutch nationwide study on euthanasia and other medical decisions concerning the end of life (MDEL). The study was done at the request of the Dutch government in preparation for a discussion about legislation on euthanasia. Three studies were undertaken: detailed interviews with 405 physicians, the mailing of questionnaires to the physicians of a sample of 7000 deceased persons, and the collecting of information about 2250 deaths by a prospective survey among the respondents to the interviews. The alleviation of pain and symptoms with such high dosages of opioids that the patient's life might be shortened was the most important MDEL in 17.5% of all deaths. In another 17.5% a non-treatment decision was the most important MDEL. Euthanasia by administering lethal drugs at the patient's request seems to have been done in 1.8% of all deaths. Since MDEL were taken in 38% of all deaths (and in 54% of all non-acute deaths) we conclude that these decisions are common medical practice and should get more attention in research, teaching, and public debate.
Article
In the Netherlands, a notification procedure for physician-assisted death has been in use since 1991. It requires doctors to report each case to the coroner, who in turn notifies the public prosecutor. Ultimately, the Assembly of Prosecutors General decides whether to prosecute. Although physician-assisted death remains technically illegal, doctors are extremely unlikely to be prosecuted if they comply with the requirements for accepted practice. In 1995, the ministers of health and justice commissioned an evaluation to determine the adequacy of the notification procedure. A random sample of 405 physicians were interviewed. We also interviewed 147 physicians who had reported cases of physician-assisted death and 116 coroners, and we reviewed 353 judicial files of reported cases. In addition, we interviewed 48 public prosecutors and reviewed the minutes of the Assembly of Prosecutors General for 1991 to 1995 and all published court decisions from 1981 through 1995. In 1995, about 41 percent of all cases of euthanasia and physician-assisted suicide were reported. There were no major differences between reported and unreported cases in terms of the patients' characteristics, clinical conditions, or reasons for the action. Most patients had cancer and were described as suffering "unbearably" and 'hopelessly." Of the 6324 cases reported during the period from 1991 through 1995, only 13 involved prosecution of the physician. The majority of respondents in the groups interviewed thought that all cases of physician-assisted death should be reviewed, although most doctors thought the review should be performed by other doctors, and there was substantial concern about the burden associated with the reporting procedure. Substantial progress in the oversight of physician-assisted death has been achieved in the Netherlands. The reporting procedure could be more streamlined and less threatening.
Article
In June 1997, the US Supreme Court unanimously decided that competent, terminally ill patients have no general constitutional right to commit suicide or to obtain assistance in committing suicide. Thus, the broad prohibitions against any kind of suicide assistance that almost every state has enacted do not violate the constitution. While many of the rulings and the bulk of the reaction to them focused on the Supreme Court's resolution of important legal controversies regarding physician-assisted suicide, this article focuses on the resulting potential for change in physicians' opinions on palliative care. The Court's reasoning may help physicians resolve substantial ethical dilemmas regarding the provision of narcotics given in high dosages, the care of incompetent patients, and the suffering caused by symptoms other than pain. For example, the Court concluded that a physician's intent can distinguish permissible acts of aggressive pain relief from impermissible acts of hastening death. This distinction has clinical uses and can help physicians develop ethical guidelines and practice standards to improve palliative care near the end of life.
Article
Concerns that high dose opioids and sedatives might shorten patient survival could contribute to insufficient symptom alleviation for terminally ill cancer patients. To examine the effects of opioids and sedatives prescribed in the final 48 hours on patient survival, a re-analysis of the prospectively collected data was performed on 209 hospice inpatients. Patient characteristics and clinical symptoms were prospectively recorded, and information about the use of opioids and sedatives in the last two days was collected by a chart review. Opioids were prescribed in 82% of the patients, with a median dose of 80 mg oral morphine equivalent (OME)/48 hours. Sixty percent received some sedative medications, mainly haloperidol (43% of total sample, 7.5 mg/48 hours), midazolam (23%, 23mg/48 hours), and hydroxyzine (15%, 50 mg/48 hours). There were no significant differences in survival between the patients who received different doses of opioids (<240, 240--599, and > or =600 mg OME/48 hours) and of benzodiazepines (0, 1--59, and > or =60 mg parental midazolam equivalent/48 hours). Also, the survival of patients with haloperidol, hydroxyzine, and other sedative medications did not differ from those without. Furthermore, an addition of use of opioids and sedatives in the final 48 hours into the multiple regression model for survival prediction achieved no significant increase in predictability. In conclusion, opioids and sedatives used for symptom control in the last days are not associated with patient survival. They are safe and useful medications to palliate severe distress in the terminal stage of cancer when administered with a low initial dosage and adequate titration.
Article
Opioids and sedative drugs are commonly used to control symptoms in patients with advanced cancer. However, it is often assumed that the use of these drugs inevitably results in shortening of life. Ethically, this outcome is excused by reference to the doctrine of double effect. In this review, we assess the evidence for patterns of use of opioids and sedatives in palliative care and examine whether the doctrine of double effect is needed to justify their use. We conclude that patients are more likely to receive higher doses of both opioids and sedatives as they get closer to death. However, there is no evidence that initiation of treatment, or increases in dose of opioids or sedatives, is associated with precipitation of death. Thus, we conclude that the doctrine of double effect is not essential for justification of the use of these drugs, and may act as a deterrent to the provision of good symptom control.
Article
Empirical data on the rate of euthanasia, physician-assisted suicide, and other end-of-life decisions have greatly contributed to the debate about the role of such practices in modern health care. In the Netherlands, the continuing debate about whether and when physician-assisted dying is acceptable seems to be resulting in a gradual stabilisation of end-of-life practices. We replicated interview and death-certificate studies done in 1990 and 1995 to investigate whether end-of-life practices had altered between 1995 and 2001. Since 1995, the demand for physician-assisted death has not risen among patients and physicians, who seem to have become somewhat more reluctant in their attitude towards this practice.
Article
Empirical data about end-of-life decision-making practices are scarce. We aimed to investigate frequency and characteristics of end-of-life decision-making practices in six European countries: Belgium, Denmark, Italy, the Netherlands, Sweden, and Switzerland. In all participating countries, deaths reported to death registries were stratified for cause (apart from in Switzerland), and samples were drawn from every stratum. Reporting doctors received a mailed questionnaire about the medical decision-making that had preceded the death of the patient. The data-collection procedure precluded identification of any of the doctors or patients. All deaths arose between June, 2001, and February, 2002. We weighted data to correct for stratification and to make results representative for all deaths: results were presented as weighted percentages. The questionnaire response rate was 75% for the Netherlands, 67% for Switzerland, 62% for Denmark, 61% for Sweden, 59% for Belgium, and 44% for Italy. Total number of deaths studied was 20480. Death happened suddenly and unexpectedly in about a third of cases in all countries. The proportion of deaths that were preceded by any end-of-life decision ranged between 23% (Italy) and 51% (Switzerland). Administration of drugs with the explicit intention of hastening death varied between countries: about 1% or less in Denmark, Italy, Sweden, and Switzerland, 1.82% in Belgium, and 3.40% in the Netherlands. Large variations were recorded in the extent to which decisions were discussed with patients, relatives, and other caregivers. Medical end-of-life decisions frequently precede dying in all participating countries. Patients and relatives are generally involved in decision-making in countries in which the frequency of making these decisions is high.
Article
To assess whether opioid and sedative medication use affects survival (from hospice admission to death) of patients in an Australian inpatient palliative care unit. Retrospective audit. Newcastle Mercy Hospice--a tertiary referral palliative care unit. All patients who died in the hospice between 1 February and 31 December 2000. Length of survival from hospice admission to death, and the median and mean doses of opioids and sedatives used in the last 24 h of life. Comparison of these with published studies outside of Australia. In this study, the use of opioids, benzodiazepines and haloperidol did not have an association with shortened survival and the only statistical significant finding was an increased survival in patients who were on 300 mg/day or more of oral morphine equivalent (OME). The proportion of patients requiring greater than or equal to 300 mg OME/day (at 28%) was higher than published studies, but the mean dose of 371 mg OME/day was within the range of other studies. The proportion of patients receiving sedatives (94%) was higher than other studies, but the median dose of parenteral midazolam equivalent of 12.5 mg per 24 h was lower than other studies from outside Australia. There was no association between the doses of opioids and sedatives on the last day of life and survival (from hospice admission to death) in this population of palliative care patients.
Article
Despite skilled palliative care, some dying patients experience distressing symptoms that cannot be adequately relieved. A patient with metastatic breast cancer, receiving high doses of opioids administered to relieve pain, developed myoclonus. After other approaches proved ineffective, palliative sedation was an option of last resort. The doctrine of double effect, the traditional justification for palliative sedation, permits physicians to provide high doses of opioids and sedatives to relieve suffering, provided that the intention is not to cause the patient's death and that certain other conditions are met. Such high doses are permissible even if the risk of hastening death is foreseen. Because intention plays a key role in this doctrine, clinicians must understand and document which actions are consistent with an intention to relieve symptoms rather than to hasten death. The patient or family should agree with plans for palliative sedation. The attending physician needs to explain to them, as well as to the medical and nursing staff, the details of care and the justification for palliative sedation. Because cases involving palliative sedation are emotionally stressful, the patient, family, and health care workers can all benefit from talking about the complex medical, ethical, and emotional issues they raise.
Article
A substantial minority of patients in palliative care settings report a high desire for hastened death (DHD), in association with physical and emotional distress, low social support, and impaired spiritual well being. To clarify to what extent DHD emerges in association with suffering prior to the end of life, we determined its prevalence and correlates in ambulatory patients with metastatic cancer, the majority of whom had an expected survival of >6 months. We hypothesized that DHD in this sample would be directly linked to physical and psychological distress, and inversely related to perceived social support, self-esteem, and spiritual well being. Three hundred twenty-six outpatients completed the Schedule of Attitudes Toward Hastened Death (SAHD), Brief Pain Inventory, Memorial Symptom Assessment Scale, Beck Depression Inventory-II (BDI-II), Beck Hopelessness Scale (BHS), Medical Outcomes Study Social Support Survey, FACIT-Spiritual Well-Being Scale, Rosenberg Self-Esteem Scale, and Karnofsky Performance Status. Over 50% of participants reported pain, >20% reported elevated levels of depression (BDI-II> or =15) and hopelessness (BHS> or =8), but <2% had a high DHD (SAHD> or =10). DHD was correlated positively with hopelessness, depression, and physical distress, and negatively with physical functioning, spiritual well being, social support, and self-esteem; it was not associated with treatment status or proximity to death. Over 34% of the variance in predicting SAHD scores was accounted for by hopelessness, depression, and functional status. The relative absence of a strong DHD in this sample suggests that the will to live tends to be preserved in cancer patients prior to the end of life, in spite of significant emotional and physical suffering.
Article
Unlabelled: Critically ill patients experience significant levels of pain and discomfort from multiple intrinsic and extrinsic sources while in the intensive care unit (ICU). The use of objective pain measures in nonverbal patients is an essential alternative approach for pain assessment when self-reports are unavailable. This paper provides a critical review of the psychometric properties of 6 objective pain measures that were developed to assess pain in nonverbal adult patients in the ICU. The strengths and weaknesses of these objective measures are evaluated, as well as their applicability for use with this patient population. Although 2 of the 6 objective pain measures showed good evidence of validity and reliability, none has undergone vigorous validation or has been accepted as a standardized measure. Findings from the available studies of objective pain measures provide useful information to direct future research to develop and validate clinically useful pain measures for use with critically ill patients unable to self-report. Perspective: This review provides clinicians with a summary of the psychometric properties of 6 objective pain measures and discusses their applicability for use to assess pain in critically ill adult patients unable to self-report.
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