Dick L. Willems

Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990-1995.

BACKGROUND 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. METHODS 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. RESULTS 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 patients 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 For each type of medical decision except those in which life-prolonging treatment was withheld or withdrawn, cancer was the most frequently reported diagnosis. CONCLUSIONS 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.

Clinical Problems with the Performance of Euthanasia and Physician-Assisted Suicide in the Netherlands

BACKGROUND AND METHODS The characteristics and frequency of clinical problems with the performance of euthanasia and physician-assisted suicide are uncertain. We analyzed data from two studies of euthanasia and physician-assisted suicide in The Netherlands (one conducted in 1990 and 1991 and the other in 1995 and 1996), with a total of 649 cases. We categorized clinical problems as technical problems, such as difficulty inserting an intravenous line; complications, such as myoclonus or vomiting; or problems with completion, such as a longer-than-expected interval between the administration of medications and death. RESULTS In 114 cases, the physicians intention was to provide assistance with suicide, and in 535, the intention was to perform euthanasia. Problems of any type were more frequent in cases of assisted suicide than in cases of euthanasia. Complications occurred in 7 percent of cases of assisted suicide, and problems with completion (a longer-than-expected time to death, failure to induce coma, or induction of coma followed by awakening of the patient) occurred in 16 percent of the cases; complications and problems with completion occurred in 3 percent and 6 percent of cases of euthanasia, respectively. The physician decided to administer a lethal medication in 21 of the cases of assisted suicide (18 percent), which thus became cases of euthanasia. The reasons for this decision included problems with completion (in 12 cases) and the inability of the patient to take all the medications (in 5). CONCLUSIONS There may be clinical problems with the performance of euthanasia and physician-assisted suicide. In The Netherlands, physicians who intend to provide assistance with suicide sometimes end up administering a lethal medication themselves because of the patients inability to take the medication or because of problems with the completion of physician-assisted suicide.

Determinants of moral distress in daily nursing practice: a cross sectional correlational questionnaire survey.

BACKGROUND Moral distress is associated with job dissatisfaction, turnover and early retirement. Because of these negative consequences moral distress should be reduced. Little research has been done on what job factors contribute to whether or not a situation causes moral distress. OBJECTIVE To identify individual and job characteristics associated with moral distress in nursing staff. DESIGN This is a cross sectional correlational study. Nursing staff members completed two survey questionnaires with a time-interval of 3 months. In the first survey questions were asked about job characteristics and job satisfaction. Three months afterwards the respondents answered questions on moral distress. PARTICIPANTS 365 nursing staff members employed in nursing homes, homes for the elderly, home care and acute care hospitals completed both questionnaires. RESULTS High moral distress levels were related to lower job satisfaction. Moral distress is higher when nurses perceive less time available to give care to patients. If satisfaction with the consultation possibilities within the team is low and when an instrumental leadership style exists, nursing staff members are also more likely to experience moral distress. Nursing staff members working 30-40h per week experience less moral distress than colleagues working fewer hours per week. Multivariate analyses showed no relations with other individual characteristics measured. CONCLUSION Job characteristics that contribute to moral distress should be an issue for managers because it is related to job satisfaction. Interventions to reduce moral distress should target at organisational issues. The way a team is supported can raise or decrease moral distress levels.

The silence of patients with end-stage COPD: a qualitative study

BACKGROUND Patients with end-stage chronic obstructive pulmonary disease (COPD) experience poor quality of life and considerable problems in daily life. However, as they often do not actively express a wish for help, they do not get the help they need. AIM To gain insight into why patients with end-stage COPD tend not to express a wish for help. DESIGN OF STUDY Prospective qualitative study with semi-structured interviews. SETTING Outpatient clinics of four hospitals and one centre specialising in asthma and COPD in the Netherlands. METHOD Sixteen semi-structured interviews were conducted with 11 patients with end-stage COPD. RESULTS To express a wish for help, patients should regard their limitations as abnormal and should realise that there are possibilities to improve their situation. However, this was not the case with the patients interviewed. They appeared to consider themselves ill at a time of acute exacerbation of their illness, but regarded their everyday life as normal. In addition, patients lived with the assumption that, as their lungs were damaged beyond repair, they could not get help. CONCLUSION Patients with end-stage COPD do not actively express a wish for help because they do not consider their limitations to be abnormal and because they do not realise that there are possibilities to improve their situation. These results suggest that care in this stage of the disease should focus on improving daily life instead of just aiming to improve the functioning of the lungs. Professionals in health care should actively explore what kind of practical help these patients might welcome in keeping up their daily activities. Future research should focus on studying whether such an approach applies to the needs of patients with end-stage COPD.

Concept of unbearable suffering in context of ungranted requests for euthanasia: qualitative interviews with patients and physicians

Objective To obtain in-depth information about the views of patients and physicians on suffering in patients who requested euthanasia in whom the request was not granted or granted but not performed. Design In-depth interviews with a topic list. Setting Patients’ homes and physicians’ offices. Participants 10 patients who explicitly requested euthanasia but whose request was not granted or performed and eight physicians of these patients; and eight physicians of patients who had requested euthanasia but had died before the request had been granted or performed or had died after the request was refused by the physician or after the patient had withdrawn his or her request. Results Not all patients who requested euthanasia thought their suffering was unbearable, although they had a lasting wish to die. Patients and physicians seemed to agree about this. In cases in which patients said they suffered unbearably there was less agreement about what constitutes unbearable suffering; patients put more emphasis on psychosocial suffering, such as dependence and deterioration, whereas physicians referred more often to physical suffering. In some cases the physician thought that the suffering was not unbearable because the patient’s behaviour seemed incompatible with unbearable suffering—for instance, because the patient was still reading books. Conclusions Patients do not always think that their suffering is unbearable, even if they have a lasting wish to die. Physicians seem to have a narrower perspective on unbearable suffering than patients and than case law suggests. In an attempt to solve the problem of different perspectives, physicians should take into account the different aspects of suffering as described in the literature and a framework for assessing the suffering of patients who ask for euthanasia.

Balancing rationalities: gatekeeping in health care

Physicians are increasingly confronted with the consequences of allocation policies. In several countries, physicians have been assigned a gatekeeper role for secondary health care. Many ethicists oppose this assignment for several reasons, concentrating on the harm the intrusion of societal arguments would inflict on doctor-patient relations. It is argued that these arguments rest on a distinction of spheres of values and of rationality, without taking into account the mixing of values and rationalities that takes place in everyday medical practice. If medical practice, then, does not follow a single, pure rationality, can it also incorporate the societal rationality of the gatekeeper role? Using a case from general practice, I try to show how physicians may integrate societal arguments into their practice in a morally acceptable way. A version of the model of reflective equilibrium and especially Beauchamp and Childresss safeguards, may be helpful both to analyse and teach such balancing of values and rationalities.

Talking With Parents About End-of-Life Decisions for Their Children

BACKGROUND AND OBJECTIVE: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to what extent parents share in the decision-making process. METHODS: We conducted a prospective exploratory study in 2 Dutch University Medical Centers. RESULTS: Overall, 27 physicians participated, along with 37 parents of 19 children for whom a decision to withhold or withdraw LST was being considered. Forty-seven conversations were audio recorded, ranging from 1 to 8 meetings per patient. By means of a coding instrument we quantitatively and qualitatively analyzed physicians’ and parents’ communicative behaviors. On average, physicians spoke 67% of the time, parents 30%, and nurses 3%. All physicians focused primarily on providing medical information, explaining their preferred course of action, and informing parents about the decision being reached by the team. Only in 2 cases were parents asked to share in the decision-making. Despite their intense emotions, most parents made great effort to actively participate in the conversation. They did this by asking for clarifications, offering their preferences, and reacting to the decision being proposed (mostly by expressing their assent). In the few cases where parents strongly preferred LST to be continued, the physicians either gave parents more time or revised the decision. CONCLUSIONS: We conclude that parents are able to handle a more active role than they are currently being given. Parents’ greatest concern is that their child might suffer.

A Study of the First Year of the End-of-Life Clinic for Physician-Assisted Dying in the Netherlands

IMPORTANCE Right to Die NL, an organization in the Netherlands that advocates for the option of euthanasia, founded the End-of-Life Clinic in 2012 to provide euthanasia or physician-assisted suicide for patients who meet all legal requirements but whose regular physicians rejected their request. Many patients whose requests are rejected have less common situations, such as a psychiatric or psychological condition, dementia, or being tired of living. OBJECTIVE To study outcomes of requests for euthanasia or physician-assisted suicide received by the clinic and factors associated with granting or rejecting requests. DESIGN Analysis of application forms and registration files from March 1, 2012, to March 1, 2013, the clinics first year of operation, for 645 patients who applied to the clinic with a request for euthanasia or physician-assisted suicide and whose cases were concluded during the study period. MAIN OUTCOMES AND MEASURES A request could be granted, rejected, or withdrawn or the patient could have died before a final decision was reached. We analyzed bivariate and multivariate associations with medical conditions, type of suffering, and sociodemographic variables. RESULTS Of the 645 requests made by patients, 162 requests (25.1%) were granted, 300 requests (46.5%) were refused, 124 patients (19.2%) died before the request could be assessed, and 59 patients (9.1%) withdrew their requests. Patients with a somatic condition (113 of 344 [32.8%]) or with cognitive decline (21 of 56 [37.5%]) had the highest percentage of granted requests. Patients with a psychological condition had the smallest percentage of granted requests. Six (5.0%) of 121 requests from patients with a psychological condition were granted, as were 11 (27.5%) of 40 requests from patients who were tired of living. CONCLUSIONS AND RELEVANCE Physicians in the Netherlands have more reservations about less common reasons that patients request euthanasia and physician-assisted suicide, such as psychological conditions and being tired of living, than the medical staff working for the End-of-Life Clinic. The physicians and nurses employed by the clinic, however, often confirmed the assessment of the physician who previously cared for the patient; they rejected nearly half of the requests for euthanasia and physician-assisted suicide, possibly because the legal due care criteria had not been met.

Managing one's body using self-management techniques: practicing autonomy.

This paper discusses some of the anthropological andphilosophical features of the use of self-managementplans by patients with a chronic disease, focusing onpatients with asthma. Characteristics of thistechnologically mediated form of self-care arecontrasted with the work of Mauss and Foucault on bodytechniques and techniques of self. The similaritiesand differences between self-management of asthma andFoucaults technologies of self highlight some of theways in which self-management contributes tomodifications in the definitions of patients andphysicians. Patients, in measuring their lungfunction, first come to rely on measurements more thanon felt disturbances, but next, felt disturbancesbecome modified by previous measurements. Physicians,on the other hand, see their role changed from expertto being a participant in a joint treatment. It isargued that the concept of agency is more appropriatefor describing the advantage of self-management forpatients than autonomy.

Prescribing of pain medication in palliative care. A survey in general practice

To examine what pain and adjuvant medication is prescribed in palliative care patients at home in The Netherlands.