Decisiones al final de la vida: resultados del cuestionario validado por expertos / End-of-life decisions: results of the expert-validated questionnaire

Objetivo: Examinar los conocimientos y actitudes, en la etapa final de la vida, sobre los cuidados paliativos, el documento de instrucciones previas, los cuidados psicofísicos, el suicidio médicamente asistido y el acompañamiento espiritual. Método: Estudio transversal efectuado en la población usuaria de un centro de salud de atención primaria de la Comunidad Autónoma de Madrid. Participaron 425 personas seleccionadas mediante un muestreo sistemático aplicado a las hojas de consulta de los/las profesionales sanitarios/as. Se analizaron 42 variables del cuestionario autoadministrado. Resultados: La población madrileña encuestada presentó las siguientes características: estudios superiores 58%, 51-70 años 47%, casados/as 60%, y mujeres 61%. Al 91% les gustaría decidir sobre sus cuidados al final de la vida. El 58% de los/las encuestadas conoce los cuidados paliativos y el 53% solicitaría acompañamiento espiritual. Conocen las instrucciones previas (50%), pero no tienen efectuado el documento. El 54% están a favor de legalizar la eutanasia y el 42% el suicidio asistido. Conclusiones: La población madrileña estudiada decidirá los cuidados al final de la vida y solicitará acompañamiento espiritual. Sobresalen los partidarios de la eutanasia frente al suicidio asistido. Desearían recibir cuidados paliativos y efectuarían las instrucciones previas. Para contrastar la opinión de la población y dar a conocer los recursos sociosanitarios de la Comunidad Autónoma de Madrid deberían realizarse encuestas en diferentes áreas sanitarias de atención primaria

Objective: To assess the attitudes and knowledge in the life's end about palliative care, advance directives, psychological-physical care, medically assisted suicide and spiritual accompaniment. Method: A cross-sectional study performed in the population at primary health care center of the Autonomous Region of Madrid (Spain). It participated 425 selected people that a simple random was applied in the consultation sheets of health professionals. They analyzed 42 variables of self-administered questionnaire. Results: The surveyed population of Madrid displayed the following characteristics: university studies 58%, 51-70 years 47%, married 60%, and women 61%. 91% would like to decide about their care at life's end. 58% of respondents are aware of palliative care and 53% would request spiritual accompaniment. They know advance directives (50%) but have not made the document. 54% are in favor of legalizing the euthanasia and 42% the assisted suicide. Conclusion: Madrid's people state they would like to decide what care they will receive at life's end and request spiritual accompaniment. Outstanding advocates of euthanasia against assisted suicide. They would like to receive palliative care and complete advance directives documents. To draw comparisons within the population, thereby increasing awareness about social health care resources in Autonomous Region of Madrid, surveys should be conducted in different primary health care centers areas of Madrid

[Who should decide at the end of life? International practice of advance care planning and possibilities for adaptation in Hungary]. / Ki döntsön az élet végén? Az ellátás elozetes tervezésének nemzetközi gyakorlata és hazai lehetoségei.

At the advanced stage of serious illness, end-of-life decisions need to be made. Advance care planning offers patients the right to decide on their own future care when independent decision-making is no longer possible. The most complex and effective advance care plans include patients' preferred or refused medical treatments, care-related wishes, and individual values as well. Advance care planning can improve end-of-life care and contribute to higher satisfaction. It can also reduce distress in relatives and the costs of care. Patients' preferences provide a guidance for professional care. A number of studies have identified the benefits of advance care planning, and it has been included in guidelines. Potential barriers to advance care planning could be as follows: taboo of talking about dying, negative attitudes of patients and relatives, poor knowledge of professional caregivers, lack of necessary circumstances to have the conversation. Advance care planning is almost unknown in Hungary, although it is possible to refuse certain types of treatments. Cooperation of professionals, development of gradual and postgraduate trainings, and improvement of social awareness are also needed so that advance care planning can be adapted in Hungary. Orv Hetil. 2018; 159(4): 131-140.

Euthanasia in Belgium: trends in reported cases between 2003 and 2013.

BACKGROUND: In 2002, the Belgian Act on Euthanasia came into effect, regulating the intentional ending of life by a physician at the patient's explicit request. We undertook this study to describe trends in officially reported euthanasia cases in Belgium with regard to patients' sociodemographic and clinical profiles, as well as decision-making and performance characteristics. METHODS: We used the database of all euthanasia cases reported to the Federal Control and Evaluation Committee on Euthanasia in Belgium between Jan. 1, 2003, and Dec. 31, 2013 (n = 8752). The committee collected these data with a standardized registration form. We analyzed trends in patient, decision-making and performance characteristics using a χ2 technique. We also compared and analyzed trends for cases reported in Dutch and in French. RESULTS: The number of reported euthanasia cases increased every year, from 235 (0.2% of all deaths) in 2003 to 1807 (1.7% of all deaths) in 2013. The rate of euthanasia increased significantly among those aged 80 years or older, those who died in a nursing home, those with a disease other than cancer and those not expected to die in the near future (p < 0.001 for all increases). Reported cases in 2013 most often concerned those with cancer (68.7%) and those under 80 years (65.0%). Palliative care teams were increasingly often consulted about euthanasia requests, beyond the legal requirements to do so (p < 0.001). Among cases reported in Dutch, the proportion in which the person was expected to die in the foreseeable future decreased from 93.9% in 2003 to 84.1% in 2013, and palliative care teams were increasingly consulted about the euthanasia request (from 34.0% in 2003 to 42.6% in 2013). These trends were not significant for cases reported in French. INTERPRETATION: Since legalization of euthanasia in Belgium, the number of reported cases has increased each year. Most of those receiving euthanasia were younger than 80 years and were dying of cancer. Given the increases observed among non-terminally ill and older patients, this analysis shows the importance of detailed monitoring of developments in euthanasia practice.

Expanding the Use of Continuous Sedation Until Death: Moving Beyond the Last Resort for the Terminally Ill.

As currently practiced, the use of continuous sedation until death (CSD) is controlled by clinicians in a way that may deny patients a key choice in controlling their dying process. Ethical guidelines from the American Medical Association and the American Academy of Pain Medicine describe CSD as a "last resort," and a position statement from the American Academy of Hospice and Palliative Medicine describe it as "an intervention reserved for extreme situations." Accordingly, patients must progress to unremitting pain and suffering and reach a last-resort stage before the option to pursue CSD is considered. Alternatively, we present and defend a new guideline in which decisionally capable, terminally ill patients who have a life expectancy of less than six months may request CSD before being subjected to the refractory suffering of a treatment of "last resort."

Requests for euthanasia: origin of suffering in ALS, heart failure, and cancer patients.

In The Netherlands, relatively more patients (20%) with amyotrophic lateral sclerosis (ALS) die due to euthanasia or physician-assisted suicide (EAS) compared with patients with cancer (5%) or heart failure (0.5%). We wanted to gain insight into the reasons for ALS patients requesting EAS and compare these with the reasons of cancer and heart failure patients. Knowing disease-specific reasons for requesting EAS may improve palliative care in these vulnerable patients. The data used in the present study were derived from the Support and Consultation in Euthanasia in The Netherlands (SCEN) evaluation study. This study provided consultation reports and questionnaires filled out by the attending physicians from 3,337 consultations conducted by SCEN physicians in situations where a patient requested EAS. For this study we selected data on all ALS patients (n = 51), all heart failure patients (n = 61), and a random sample of 73 cancer patients. The most frequently reported reasons for unbearable suffering were: fear of suffocation (45%) and dependency (29%) in ALS patients, pain (46%) and fatigue (28%) in cancer patients, and dyspnea (52%) and dependency (37%) in heart failure patients. Somatic complaints were reported more frequently as a reason for EAS by cancer patients [odds ratio (OR) 0.20, 95% confidence interval (CI) 0.09-0.46] and heart failure patients [OR 0.16, 95% CI 0.05-0.46] than by ALS patients. ALS patients should be helped in a timely fashion to cope with psychosocial symptoms, e.g., by informing them about the low risk of suffocation in the terminal phase and the possible means of preventing this.

Legal euthanasia in Belgium: characteristics of all reported euthanasia cases.

OBJECTIVES: To study the reported medical practice of euthanasia in Belgium since implementation of the euthanasia law. RESEARCH DESIGN: Analysis of the anonymous database of all euthanasia cases reported to the Federal Control and Evaluation Committee Euthanasia. SUBJECTS: All euthanasia cases reported by physicians for review between implementation of the euthanasia law on September 22nd, 2002 and December 31, 2007 (n = 1917). MEASURES: Frequency of reported euthanasia cases, characteristics of patients and the decision for euthanasia, drugs used in euthanasia cases, and trends in reported cases over time. RESULTS: The number of reported euthanasia cases increased every year from 0.23% of all deaths in 2002 to 0.49% in 2007. Compared with all deaths in the population, patients who died by euthanasia were more often younger (82.1% of patients who received euthanasia compared with 49.8% of all deaths were younger than 80, P < 0.001), men (52.7% vs. 49.5%, P = 0.005), cancer patients (82.5% vs. 23.5%, P < 0.001), and more often died at home (42.2% vs. 22.4%, P < 0.001). Euthanasia was most often performed with a barbiturate, sometimes in combination with neuromuscular relaxants (92.4%) and seldom with morphine (0.9%). In almost all patients, unbearable physical (95.6%) and/or psychological suffering (68%) were reported. A small minority of cases (6.6%) concerned nonterminal patients, mainly suffering from neuromuscular diseases. CONCLUSIONS: The frequency of reported euthanasia cases has increased every year since legalization. Euthanasia is most often chosen as a last resort at the end of life by younger patients, patients with cancer, and seldom by nonterminal patients.

Trends and determinants of end-of-life practices in ALS in the Netherlands.

BACKGROUND: In the Netherlands, the proportion of patients with amyotrophic lateral sclerosis (ALS) who choose the option of euthanasia or physician-assisted suicide (PAS) is relatively high (20%). The objective of this study was to determine which factors influence end-of-life practices in ALS and whether rates are changing over time. METHODS: In a cohort survey, 204 physicians and 198 informal caregivers (response rates 75% and 80%) of patients with ALS who died between 2000 and 2005 filled out questionnaires of the end-of-life circumstances of the patient. Results were compared with those of a similar study performed during the period 1994-1998. RESULTS: In 2000-2005, 16.8% of the patients decided on euthanasia or PAS compared to 20.2% in 1994-1998. Thirty-one (14.8%) patients died during continuous deep sedation (CDS) in 2000-2005. Euthanasia or PAS, but not CDS, were significantly associated with religion not being important to the patient, being more educated, and dying at home. Euthanasia or PAS were not associated with quality of care items or symptoms of depression. Loss of function was similar in both groups. Informal caregivers of patients who died after euthanasia or PAS more frequently reported fear of choking (p = 0.003), no chance of improvement (p = 0.001), loss of dignity (p = 0.02), being dependent on others (p = 0.002), and fatigue (p = 0.018) as reasons for shortening life. Hopelessness was associated with euthanasia or PAS, as with CDS. CONCLUSION: The frequency of euthanasia or physician-assisted suicide (PAS) in amyotrophic lateral sclerosis (ALS) appeared stable over time and 1 in 7 patients died during CDS. CDS is relatively common in ALS, but appears to have other determinants than euthanasia or PAS. Subjective factors may be important in explaining euthanasia or PAS in ALS.

'Setting a principled boundary'? Euthanasia as a response to 'life fatigue'.

The Dutch case of Brongersma presents novel challenges to the definition and evaluation of voluntary euthanasia since it involved a doctor assisting the suicide of an individual who was (merely?) 'tired of life'. Legal officials had called on the courts to 'set a principled boundary', excluding such cases from the scope of permissible voluntary euthanasia, but they arguably failed. This failure is explicable, however, since the case seems justifiable by reference to the two major principles in favour of that practice, respect for autonomy and beneficence. Ultimately, it will be argued that those proponents of voluntary euthanasia who are wary of its use in such circumstances may need to draw upon 'practical' objections, in order to erect an otherwise arbitrary perimeter. Furthermore, it will be suggested that the issues raised by the case are not peculiarly Dutch in nature and that, therefore, there are lessons here for other jurisdictions too.

Changes in medical end-of-life practices during the legalization process of euthanasia in Belgium.

Changes in medical practices during transitions in regulating healthcare are rarely investigated. In this study, we investigated changes in medical end-of-life decisions with a possible or certain life-shortening effect (ELDs) that occurred during the legalization process of euthanasia in Belgium. We took representative random samples from deaths reported to registries in Flanders, Belgium in 1998 (n=3999) at the beginning of the process and in 2001 (N=5005), at the end of the process. The reporting physicians received an anonymous mail questionnaire about possible ELDs preceding the death involved. We found no significant shifts in the epidemiology of diseases between 1998 and 2001. The overall incidence of ELDs did not change. The incidence decreased for euthanasia, administering life-ending drugs without patient's explicit request, and alleviation of pain and symptoms with life-shortening co-intention. Incidence increased for alleviation of pain and symptom without life-shortening intention, and remained stable for non-treatment decisions. All decisions in 2001 were more often discussed with patients, their relatives and nurses. In 2001, continuous deep sedation was reported in 8.3% of deaths. We can conclude that physicians' end-of-life practices have substantially changed during the short but tumultuous legalization process of euthanasia in Belgium. Although follow-up research is needed to investigate the continuance of these changes, it is important for policy makers to keep in mind that social factors related to transitions in healthcare regulation may play an important role in the physicians' actual behaviour.

Chinese concepts of euthanasia and health care.

This article argues that taking concepts of euthanasia out of their political and economic contexts leads to violations of the premises on which the Stoic ideal of euthanasia is based: 'a quick, gentle and honourable death.' For instance, the transplantation of the narrowly defined concept of euthanasia developed under the Dutch welfare system into a developing country, such as the People's Republic of China (PRC), seems inadequate. For it cannot deal with questions of anxiety about degrading forms of dying and suffering without reference to its economic rationale, demanded by a scarcity (unequal distribution) of health care resources. The weakness of health care provisions for the terminally ill in Mainland China has become increasingly poignant since the collapse of collective health care institutions in the countryside since the reforms of the late-1980s. As in most cases where health care facilities are wanting, it is difficult to apply the criteria of gentleness and dignity at reaching death. Its solution lies not in a faster relief from suffering by euthanasia, but in extending the quality of life through distributive justice within Chinese healthcare policy-making. This paper begins with a brief description of the Dutch euthanasia law, after which it discusses Chinese conceptions of euthanasia in biomedical textbooks, the media and in surveys. It concludes by pointing out the need for a transnational framework in which both the specifics and generalities of euthanasia can be discussed.

[Trends in the agents used for euthanasia and the relationship with the number of notifications]. / Trends in gebruikte middelen bij euthanasie en samenhang met het aantal meldingen.

OBJECTIVE: To provide insight into the relationship between the drugs used for euthanasia and its notification. DESIGN: Retrospective and descriptive. METHODS: By comparing the drugs used for euthanasia according to different components of studies carried out in 1990, 1995 and 2000, insight was obtained into the drugs used in all cases of euthanasia satisfying the definition thereof (death-certificate studies), those cases of euthanasia that, in addition, were defined as such by the physician (physician interviews), and the cases of euthanasia that, in addition, had been reported (reported case studies). RESULTS: In 2001, standard drugs for euthanasia were used in 76% of cases and opioids in 23%. Euthanasia with standard drugs was reported in 73% of cases in 1995, and in 71% of cases in 2000, while euthanasia with opioids was reported in 2% and 1% of cases, respectively. The total percentage of euthanasia reported was higher in 2001 than in 1995 (54% versus 44%), since in 2001 euthanasia was apparently performed more often with standard drugs and less with opioids. CONCLUSION: An increasing proportion of cases of euthanasia is being carried out with the drugs recommended for this purpose. Euthanasia with opioids was rarely reported. Possibly, physicians did not always consider these cases to be euthanasia.

Criterios éticos y jurídicos de los médicos del municipio de Guantánamo sobre la eutanasia voluntaria / Doctors' ethical and juridical approaches at the Guantánamo municipality about voluntary euthanasia

Los criterios de los médicos del municipio Guantánamo sobre la naturaleza moral y el status legal en Cuba de la eutanasia voluntaria (EV) se desconocen. Para darlos a conocer, se realizó un estudio de opinión mediante la aplicación de un cuestionario a una muestra estratificada y al azar de 138 médicos de una población de 1308 durante abril y mayo de 1997. La muestra se calculó con el 3,5 por ciento de error estándar y el 95 por ciento de confiabilidad. De los 138 médicos encuestados, 103 (74,6 por ciento) conocen el tema de la EV, mientras que 35 (25,4 por ciento) lo desconocen. De los 103 médicos informados sobre el tema, 65 (63,1 por ciento) aceptaron su carácter moral, 29 (28,1 por ciento) consideraron que es inmoral y 9 (8,7 por ciento) estuvieron inseguros. De los 94 médicos con criterios definidos, 54 (57,4 por ciento) opinaron que la EV debe ser legalizada en Cuba, mientras que 40 (42,5 por ciento) estimaron que no(AU)