Preferences in end-of-life care of older persons: after-death interviews with proxy respondents

This population-based study employing after-death interviews with proxies describes older persons' preferences regarding medical care at the end of life. Interviews were held with 270 proxy respondents of 342 deceased persons (age range 59-91) in the Netherlands, The deceased were respondents to the Longitudinal Aging Study Amsterdam. The prevalence of advance directives (ADs), preferences for medical decisions at the end of life (i.e. withholding treatment, physician-assisted suicide euthanasia) and preferences about the focus of treatment in the last week of life (i.e. comfort care versus extending life) were examined. Written ADs were present in 14% of the sample. A quarter had designated a surrogate decision-maker. Co-morbidity and perceived self-efficacy (PSE) were positively associated with ADs. About half the sample had expressed a preference in favour or against one or more medical decisions at the end of life. Predictors positively associated with expressing a preference were co-morbidity, dying from cancer, and PSE. Being religious was negatively associated with expressing a preference. The knowledge of the proxy regarding the older person's preference for the focus of treatment was dependent on the patient's symptom burden as perceived by the proxy. The majority of older persons had died without either an AD, or having expressed preferences for end-of-life care. Stimulating the formulation of ADs may help professionals who work with older people to understand these preferences better, especially in the case of non-cancer patients and those with low PSE.     

Terminal sedation: consultation with a second physician as is the case in euthanasia and assisted suicide

In terminally-ill patients in the Netherlands deep sedation by means of a continuous subcutaneous infusion with midazolam occurs more frequently than euthanasia and assisted suicide. Deep terminal sedation is applied to relieve symptoms during the phase of dying, but in contrast to euthanasia and assisted suicide, does not hasten death. In three terminally-ill patients, a 65-year-old man suffering from pulmonary carcinoma, a 94-year-old woman with general malaise, nausea and anorexia, and a 79-year-old woman in the final stage of ovarian carcinoma, a general-practitioner advisor was consulted about an end-of-life decision--deep terminal sedation versus euthanasia or assisted suicide. The first two patients were given deep sedation until death, in both cases a day and a half later. The third patient's request for euthanasia was considered to meet the legal criteria for euthanasia. Compliance with the Dutch statutory criteria for due care in euthanasia and assisted suicide might also be helpful when deciding about terminal deep sedation, but the role and responsibility of the attending physician may differ. However, the radical effects of sedation on the terminally-ill patient and the rapid changes in the clinical situation of the patient when the decision to sedate is taken, both emphasize the need for consultation with another physician.     

More counselling for end-of-life decisions by GPs with own advance directives: A postal survey among German general practitioners

Background: Although general practitioners (GPs) are among the preferred contact persons for discussing end-of-life issues including advance directives (ADs), there is little data on how GPs manage such consultations.

Objectives: This postal survey asked German GPs about their counselling for end-of-life decisions.

Methods: In 2015, a two-sided questionnaire was mailed to 959 GPs. GPs were asked for details of their consultations on ADs: frequency, duration, template use, and whether they have own ADs. Statistical analysis evaluated physician characteristics associated with an above-average number of consultations on AD.

Results: The participation rate was 50.3% (n?=?482), 70.5% of the GPs were male; the average age was 54 years. GPs had an average of 18 years of professional experience, and 61.4% serve more than 900 patients per three months. Most (96.9%) GPs perform consultations on living wills (LW) and/or powers of attorney (PA), mainly in selected patients (72.3%). More than 20 consultations each on LWs and PAs are performed by 60% and 50% of GPs, respectively. The estimated mean duration of consultations was 21?min for LWs and 16?min for PAs. Predefined templates were used in 72% of the GPs, 50% of GPs had their ADs. A statistical model showed that GPs with ADs and/or a qualification in palliative medicine were more likely to counsel ≥20 patients per year for each document.

Conclusion: The study confirmed that nearly all German GPs surveyed provide counselling on ADs. Physicians with ADs counsel more frequently than those without such documents.     

Autonomy-based arguments against physician-assisted suicide and euthanasia: a critique

Respect for autonomy is typically considered a key reason for allowing physician assisted suicide and euthanasia. However, several recent papers have claimed this to be grounded in a misconception of the normative relevance of autonomy. It has been argued that autonomy is properly conceived of as a value, and that this makes assisted suicide as well as euthanasia wrong, since they destroy the autonomy of the patient. This paper evaluates this line of reasoning by investigating the conception of valuable autonomy. Starting off from the current debate in end-of-life care, two different interpretations of how autonomy is valuable is discussed. According to one interpretation, autonomy is a personal prudential value, which may provide a reason why euthanasia and assisted suicide might be against a patient’s best interests. According to a second interpretation, inspired by Kantian ethics, being autonomous is unconditionally valuable, which may imply a duty to preserve autonomy. We argue that both lines of reasoning have limitations when it comes to situations relevant for end-of life care. It is concluded that neither way of reasoning can be used to show that assisted suicide or euthanasia always is impermissible.     

Age-based disparities in end-of-life decisions in Belgium: a population-based death certificate survey

ABSTRACT: BACKGROUND: A growing body of scientific research is suggesting that end-of-life care and decision making may differ between age groups and that elderly patients may be the most vulnerable to exclusion of due care at the end of life. This study investigates age-related disparities in the rate of end-of-life decisions with a possible or certain life shortening effect (ELDs) and in the preceding decision making process in Flanders, Belgium in 2007, where euthanasia was legalised in 2002. Comparing with data from an identical survey in 1998 we also study the plausibility of the 'slippery slope' hypothesis which predicts a rise in the rate of administration of life ending drugs without patient request, especially among elderly patients, in countries where euthanasia is legal. METHOD: We performed a post-mortem survey among physicians certifying a large representative sample (n=6927) of death certificates in 2007, identical to a 1998 survey. Response rate was 58.4%. RESULTS: While the rates of non-treatment decisions (NTD) and administration of life ending drugs without explicit request (LAWER) did not differ between age groups, the use of intensified alleviation of pain and symptoms (APS) and euthanasia/assisted suicide (EAS), as well as the proportion of euthanasia requests granted, was bivariately and negatively associated with patient age. Multivariate analysis showed no significant effects of age on ELD rates. Older patients were less often included in decision making for APS and more often deemed lacking in capacity than were younger patients. Comparison with 1998 showed a decrease in the rate of LAWER in all age groups except in the 80+ age group where the rate was stagnant. CONCLUSION: Age is not a determining factor in the rate of end-of-life decisions, but is in decision making as patient inclusion rates decrease with old age. Our results suggest there is a need to focus advance care planning initiatives on elderly patients. The slippery slope hypothesis cannot be confirmed either in general or among older people, as since the euthanasia law fewer LAWER cases were found.     

Medical end-of-life decisions: Does its use differ in vulnerable patient groups? A systematic review and meta-analysis

Medical end-of-life decisions, defined as end-of-life practices with a potential or certain life-shortening effect, precede almost 50% of deaths in Western countries, and receive ample medical-ethical attention. This systematic review aims to detect whether there are differences in the prevalence of medical end-of-life decisions in 'vulnerable' patient groups. In 2009, five major databases were scrutinized for publications containing original data on the prevalence of euthanasia/physician-assisted suicide, life-ending without explicit patient request, intensified symptom alleviation, non-treatment decisions and palliative sedation by social factors (eg age, gender and SES). Heterogeneous findings were pooled using a random effects model. We identified 6377 papers of which 51 papers were selected, involving over 1.09 million patients. Most publications reported the prevalence of non-treatment decisions. The most studied social factors were age and gender. Among patients older than eighty years, non-treatment decisions occurred more frequently compared with younger patients, while intensified symptom alleviation, palliative sedation, euthanasia/physician-assisted suicide and life-ending without explicit request were practiced less often. Similar patterns of association, although less strong, were found for female patients compared with males and those with lower levels of education versus more highly-educated patients. We conclude that the administration of medication with a potential or certain life-shortening effect seemed generally to be practiced less often among the elderly, females and less well-educated patients compared with younger, male or more educated patients, while decisions that include the withdrawal or withholding of treatments seem to be more common in these groups. Further studies should focus on investigating whether these differences reflect less than optimal end-of-life care for specific patient groups.     

The role of values and experience in determining social workers' attitudes toward euthanasia and assisted suicide

This article reports results of a study examining the impact of personal and professional values and experience on 122 hospital social workers' attitudes toward euthanasia and assisted suicide. Respect for self-determination was rated as the most important consideration in end-of-life issues. Predictors of social workers' agreement that euthanasia should be legal were: self-determination, religious beliefs, educational level (BSW/MSW), and for assisted suicide were: religious beliefs, belief in the potential for abuse, educational level and participation in ethics training. The findings underscore the need for social workers' awareness of how an interplay of personal and professional factors in potentially explosive ethical issues may influence practice in health care settings.     

New research on the practice, reporting and reviewing of euthanasia and other medical end-of-life decisions, 2001/2002

In the second half of 2001, an extensive study will start which will evaluate the review procedure for euthanasia in the Netherlands. Since the end of 1998, euthanasia has to be reviewed by regional review committees, which include a physician and an ethicist, in addition to a legal expert. The aim of this study is to examine whether the reporting procedure meets the aim and whether there are any points which require improvement. This study follows on from those carried out in 1990/1991 and 1995/1996, which investigated euthanasia and other medical end-of-life decisions (assisted suicide, termination of life without the patient's explicit request, treatment of pain and symptoms with a possible life-shortening effect, and forgoing potentially life-prolonging treatment). The study consists of an analysis of cases of death (in which the numbers and nature of various medical end-of-life decisions will be established), physician interviews (to gain insight into the context in which medical end-of-life decisions are made), a study of reported cases (to give an overview of doctors' experiences with the review committees), and a study carried out amongst the general public (around 1,500 Dutch adults will be given a written questionnaire about their opinions concerning medical end-of-life decisions and the reporting procedure). In addition to this Dutch study, a European study subsidized by the European Commission is being carried out which will examine attitudes and experiences regarding medical end-of-life decisions in six European countries (Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland). This will, for the first time, enable a true comparison to be made between the Netherlands and other countries in terms of euthanasia and other medical end-of-life decisions.     

The Role of Values and Experience in Determining Social Workers' Attitudes Toward Euthanasia and Assisted Suicide

ABSTRACT

This article reports results of a study examining the impact of personal and professional values and experience on 122 hospital social workers' attitudes toward euthanasia and assisted suicide. Respect for self-determination was rated as the most important consideration in end-of-life issues. Predictors of social workers' agreement that euthanasia should be legal were: self-determination, religious beliefs, educational level (BSW/MSW), and for assisted suicide were: religious beliefs, belief in the potential for abuse, educational level and participation in ethics training. The findings underscore the need for social workers' awareness of how an interplay of personal and professional factors in potentially explosive ethical issues may influence practice in health care settings.     

Design of the Advance Directives Cohort: a study of end-of-life decision-making focusing on Advance Directives

Background  

ADs are documents in which one can state one's preferences concerning end-of-life care, aimed at making someone's wishes known in situations where he/she is not able to do so in another manner. There is still a lot unclear about ADs. We designed a study aimed at investigating the whole process from the formulating of an AD to its actual use at the end of life.     

Advance directives for health care among older community residents

Advance directives (ADs) for healthcare are useful planning tools for older people. In addition, the utilization of ADs is important for health and human services planners, administrators, and policy makers to understand because whether or not people have an AD, and what types of ADs they have can dramatically influence the treatment trajectories and the well-being of older people who can longer make decisions for themselves. Using telephone survey data with a random sample of Oklahoma residents age 60 and older, we examined the prevalence of four measures of AD use. Prior to the implementation of this survey in 2002, the Oklahoma Aging Services Division was very active in promoting two types of AD---the living will and the durable power of attorney for healthcare. More than half of those interviewed had a living will, two-fifths had a durable power of attorney for healthcare, and one-third had both ADs. Older age and higher levels of education were consistently associated with having ADs.     

Trends in hastened death decision criteria: A review of official reports

Voluntary euthanasia and physician assisted suicide has been legally performed in several countries. However, little is known about how decision-making occurs. We undertook this study to describe trends in officially reported cases of voluntary euthanasia or physician assisted suicide and to explore the decision-making procedures and understand relevant criteria. Thematic analysis of the official reports from several countries was performed. Differences in the number of reported deaths from hasten death practices between countries was found, with higher numbers in countries who performed voluntary euthanasia. Patients profiles follow the trends in the literature (the majority is aged between 70 and 89 years old, men die more often than women in most countries, most prevalent underlying disease is cancer, most people died at home). Despite there being little detail in the reports, decision is explored in the majority of countries and states (exploration of acceptable alternatives and verification of the voluntariness of the request). The importance of collecting data on this topic around the world and establishing a firm evidence-base to support professionals’ practice is highlighted.     

Tipologías de los madrileños ante la etapa final de la vida mediante un análisis de clusters

Objective

To establish typologies within Madrid's citizens (Spain) with regard to end-of-life by cluster analysis.

Developments in euthanasia practice in the Netherlands: Balancing professional responsibility and the patient’s autonomy

In 2015, euthanasia accounted for 4.5% of deaths in the Netherlands, of which 93% were performed by a GP. Historically, a conflict of physician’s duties—to alleviate unbearable suffering and at the same time preserve the patient’s life—is central to the justification of euthanasia practice in the Netherlands. However, there seems to be a shift towards a greater emphasis on the patient’s autonomous wish as the primary basis for euthanasia. This shift has consequences for the role and interpretation of the physician’s duties in end-of-life care. This paper aims to describe these developments in euthanasia practice and end-of-life decision-making. We describe important relevant developments and look into the role and the meaning of two dimensions of the concept of ‘patient autonomy’ regarding end-of-life decisions, in particular, the euthanasia request. We claim that the concept of autonomy ‘as a right,’ which can be distinguished from autonomy ‘as an ideal,’ narrows the physician’s window of opportunity to offer end-of-life care other than euthanasia.     

Opinions and use of advance directives by physicians at a tertiary care hospital

The physician-patient relationship is an essential part of end-of-life planning, including discussions of advance directives (AD). Physicians likely to encounter AD issues with their patients were identified and queried as to their knowledge, opinion, and experience with ADs. Though most physicians felt ADs were helpful to both physicians and patients, considerably less were familiar with hospital policies and the different types of ADs. Formal education in the use and function of ADs also appears to be lacking, suggesting a need to improve the way in which ADs are addressed during medical training.     

A feminist case against euthanasia. Women should be especially wary of arguments for "the freedom to die"

Feminists, among others, should not be too quick to hail assisted suicide and euthanasia as extensions of human freedom. Indeed, there are good reasons why women should be especially suspicious of such "reforms." First, it is not clear that a person has a moral right to end his or her existence. Feminists understand that suicide and murder are irretrievably linked, and that a person is not a monad. We often hear of suicide attempts in which the person's body--by vomiting up poison, for instance--overrules his or her mind. If there can be such miscommunication between a mind and a body, how are we to trust the communication between a person and the physician ready to assist his or her suicide? Ambivalent motivation and ambiguous meanings have always characterized human relations. In the past, however, an absolute taboo against suicide or euthanasia cemented a patient's right to expect the care of his or her physician, family, and community. If we were to discard that taboo, we would subtly alter these relationships and make each other more vulnerable. History suggests that women, minorities, the ill, the old, and the handicapped would be most at risk. Finally, the assisted-suicide debate has even larger social implications. Unconditional respect for the gift of life is eroding in the United States. The suicide rate is already climbing at all levels of society, especially among teenagers. Wouldn't the acceptance of suicide and euthanasia make it even more acceptable for people to check out of all kinds of uncomfortable situations--marriages or life?     

Euthanasia and assisted suicide. II. Do Dutch family doctors act prudently?

We conducted a survey among two random samples of Dutch doctors in order to determine whether they acted prudently with regard to euthanasia and assisted suicide. The doctors completed an anonymous questionnaire and those who at one time or another had applied euthanasia or assisted suicide (52%) were asked about several aspects of the requirements for prudent practice. 'Pointless suffering' was the most important and most common reason for requesting euthanasia or assisted suicide; 'pain' was rarely the most important reason. In 7% of the cases alternative forms of treatment were still available; these were hardly ever therapeutic. A total of 12% of the doctors had applied euthanasia or assisted suicide without having had any kind of consultation or discussion with a colleague, a nurse or any other health care professional; 26% had not issued a certificate testifying to death from natural causes. We conclude that some of the family doctors do not observe the procedural requirements, but that the majority satisfies the material requirements for prudent practice.     

Euthanasia and assisted suicide. I. How often is it practised by family doctors in The Netherlands?

A survey was conducted among family doctors to determine the frequency with which they were requested to administer euthanasia or assist in suicide, and how often they actually applied these procedures. Two random samples (in each n = 521) were taken from the population of Dutch family doctors (n = 6300) and requested to complete an anonymous questionnaire. The response was 67%. The entire body of Dutch family doctors practices euthanasia or assisted suicide about 2000 times per annum; 48% have never engaged in these practices. An average of 40% of all requests are complied with. We conclude that far fewer family doctors are involved in euthanasia and assisted suicide than was previously supposed. Euthanasia or assisted suicide was administered to 1 in 25 persons who died in their own homes.