End-of-Life Decisions in Pediatric Cancer Patients.

BACKGROUND: End-of-life decisions (ELDs) have been investigated in several care settings, but rarely in pediatric oncology. OBJECTIVE: The aims of this study were to characterize the practice of end-of-life decision making in a Dutch academic medical center and to explore pediatric oncologists' perspectives on decision making. METHODS: Between 2001 and 2010, in a specified period of 2 years, 57 children died of cancer. The attending pediatric oncologists of 48 deceased children were eligible for this study. They were requested to complete a retrospective questionnaire on characteristics of ELDs that may have preceded a child's death. ELDs were defined as decisions concerning administering or forgoing treatment that may unintentionally or intentionally hasten death. RESULTS: In 31 of 48 cases (65%) one or more ELDs were made. In 20 of 31 cases potentially life-prolonging treatments were discontinued or withheld, and in 22 of 31 cases drugs were administered to alleviate pain or other symptoms in potentially life-shortening dosages. Frequently mentioned considerations for making ELDs were no prospects of improvement (n=21;68%) and unbearable suffering without a curative perspective (n=13;42%). ELDs were discussed with parents in all cases, and with the child in 9 of 31 cases. After the child's death, the pediatric oncologist met the parents in all ELD cases and in 11 of 17 non-ELD cases. Pediatric oncologists were satisfied with care around the child's death in 90% of the ELD cases versus 59% of the non-ELD cases. CONCLUSIONS: In two-thirds of cases, ELDs preceded the death of a child with cancer. This is the first study providing insights into the characteristics of ELDs from a pediatric oncologist's point of view.

End-of-life decision making in neonates and infants: comparison of The Netherlands and Belgium (Flanders).

AIM: We compared the results of two recent studies on end-of-life decisions (ELDs) for neonates and infants in Belgium (Flanders) and The Netherlands. METHODS: Questionnaires were sent to physicians who reported the death of a child under the age of 1 (Belgium: n = 292, response 87%; Netherlands: n = 249, response 84%). The questionnaires included structured questions about whether death had been preceded by ELDs, and about the decision-making process. RESULTS: In both countries, in about 25% of all deaths a life-sustaining treatment was withheld, and in about 40% pain or other symptoms were alleviated taking into account that death might be hastened. In Belgium, a life-sustaining treatment was less often withdrawn than in The Netherlands (32% vs. 50%, respectively). Drugs were administered with the explicit intention of hastening death in similar percentages of all deaths (Belgium: 7%; Netherlands: 9%). Dutch physicians more often than Belgian physicians discussed ELDs with parents (96% vs. 81%, respectively), and with colleague physicians (94% vs. 80%, respectively). CONCLUSIONS: End-of-life decision making in severely ill neonates seems to be rather similar in Belgium and The Netherlands. Differences are that Dutch physicians more often withdraw life-sustaining treatment. Furthermore, parents and colleague physicians are more often involved in the decision making in The Netherlands.

Using drugs to end life without an explicit request of the patient.

A small proportion of deaths result from the use of drugs with the intention to hasten death without an explicit request of the patient. Additional insight into its characteristics is needed for evaluating this practice. In the Netherlands in 2001, questionnaires were mailed to physicians that addressed the decision making that preceded their patient's death. Cases of ending life without an explicit request of the patient were compared with similar cases from 1995 and with cases from Belgium, Denmark, and Switzerland. In the Netherlands in 2001, patients receiving life-ending drugs without their explicit request were most often 80+ years old and had cancer. Most of them were incompetent patients nearing death. Characteristics of this practice in 1995 were quite comparable, as were characteristics of this practice in Belgium, Denmark, and Switzerland. The use of drugs with the intention to hasten death without an explicit request of the patient is part of medical end-of-life practice in the studied countries, regardless of their legal framework, and it occurs in similar fashion.

Regulating physician-assisted dying for minors in the Netherlands: views of paediatricians and other physicians.

AIM: In 2002, the Dutch Euthanasia Act came into effect, which made euthanasia available to individuals from the age of 12 and above. The objective of our study was to gain insight into how Dutch paediatricians and other physicians treating children feel about the regulation of physician-assisted dying. METHODS: We interviewed 63 paediatricians, 125 general practitioners and 208 clinical specialists about their views on physician-assisted dying and the Euthanasia Act. RESULTS: Of the paediatricians, 44% agreed with the age limit of 12 years, and 52% agreed with the requirement that parents be involved. Somewhat more than half thought the Act could contribute to the disclosure of end-of-life practices (52%), the quality of the review procedure (61%), careful decision making (54%) and the reporting rate (65%). These percentages were comparable for other physicians. A minority of the physicians in all groups indicated that, with this Act in place, they would be more willing to report such practices. The most optimistic in this respect were the paediatricians, of whom 39% expected such an effect. CONCLUSIONS: About half of Dutch paediatricians support the Euthanasia Act and expect it to achieve its aims, which is the same percentage as was found for other clinical specialists and general practitioners. However, most physicians do not foresee an increase in willingness to report cases of physician-assisted dying.

Terminal sedation and euthanasia: a comparison of clinical practices.

BACKGROUND: An important issue in the debate about terminal sedation is the extent to which it differs from euthanasia. We studied clinical differences and similarities between both practices in the Netherlands. METHODS: Personal interviews were held with a nationwide stratified sample of 410 physicians (response rate, 85%) about the most recent cases in which they used terminal sedation, defined as administering drugs to keep the patient continuously in deep sedation or coma until death without giving artificial nutrition or hydration (n = 211), or performed euthanasia, defined as administering a lethal drug at the request of a patient with the explicit intention to hasten death (n = 123). We compared characteristics of the patients, the decision-making process, and medical care of both practices. RESULTS: Terminal sedation and euthanasia both mostly concerned patients with cancer. Patients receiving terminal sedation were more often anxious (37%) and confused (24%) than patients receiving euthanasia (15% and 2%, respectively). Euthanasia requests were typically related to loss of dignity and a sense of suffering without improving, whereas requesting terminal sedation was more often related to severe pain. Physicians applying terminal sedation estimated that the patient's life had been shortened by more than 1 week in 27% of cases, compared with 73% in euthanasia cases. CONCLUSIONS: Terminal sedation and euthanasia both are often applied to address severe suffering in terminally ill patients. However, terminal sedation is typically used to address severe physical and psychological suffering in dying patients, whereas perceived loss of dignity during the last phase of life is a major problem for patients requesting euthanasia.

Medical decision-making for seriously ill non-elderly and elderly patients.

OBJECTIVES: Age of patients by itself is no longer a contra-indication for most medical interventions. The increase of possible interventions for elderly patients has contributed to a sharp age-specific increase of health care costs. Our study aimed to increase the insight in medical decision-making about life-prolonging interventions for patients from non-elderly and elderly age groups. DESIGN: Case-control study. SETTING: Clinical practices in three settings: oncology, nursing home and cardiology. SUBJECTS: Eighty-one physicians, representing a response of 60%. METHODS: Face-to-face interviews using a structured questionnaire addressing decision-making about the application of taxoid treatment for breast cancer patients, the application of bypass surgery for patients with angina pectoris under or over 70 years of age, and referral to specialist treatment because of a suspected malignancy of nursing home patients under or over 75 years of age. RESULTS: The chance of having been treated was in all settings lower for patients with a relatively poor quality of life and for patients who had no (known) preference to be treated. No differences were found for chance of having been treated between non-elderly and elderly patients with similar patient characteristics. The only exception to this is the patient preference concerning treatment: elderly patients were more likely to have been treated against their will than non-elderly patients were. CONCLUSIONS: A relatively high frequency of non-treatment decisions for elderly patients may be predominantly explained by the fact that patient characteristics that determine non-treatment decision-making are more prevalent in elderly age groups, and not by the effect of age per se.

Medical end-of-life decisions for children in the Netherlands.

BACKGROUND: Most end-of-life decision-making studies have, until now, involved either the general population or newborn infants. OBJECTIVE: To assess the frequency of end-of-life decisions preceding child death and the characteristics of the decision-making process in the Netherlands. METHODS: Two studies were performed. The first was a death certificate study in which all 129 physicians reporting the death of a child aged between 1 and 17 years in the period August to December 2001 received a written questionnaire; the second was an interview study in which face-to-face interviews were held with 63 physicians working in pediatric hospital departments. RESULTS: Some 36% of all deaths of children between the ages of 1 and 17 years during the relevant period were preceded by an end-of-life decision: 12% by a decision to refrain from potentially life-prolonging treatment; 21% by the alleviation of pain or symptoms with a possible life-shortening effect; and 2.7% by the use of drugs with the explicit intention of hastening death. The latter decision was made at the child's request in 0.7% and at the request of the family in 2% of cases. The interview study examined 76 cases of end-of-life decision making. End-of-life decisions were discussed with all 9 competent and 3 partly competent children, with the parents in all cases, with other physicians in 75 cases, and with nurses in 66 cases. CONCLUSIONS: While not inconsiderable, the percentage of end-of-life decisions was lower for children than for adults and newborn infants. Most children are not considered to be able to participate in the decision-making process. Decisions are generally discussed with parents and other caregivers and, if possible, with the child.

Physicians' willingness to grant requests for assistance in dying for children: a study of hypothetical cases.

OBJECTIVE: To study the willingness of Dutch physicians to use potentially life-shortening or lethal drugs for severely ill children. STUDY DESIGN: We asked 63 pediatricians about their approach to 10 hypothetical cases of children with cancer. The age of the child (15, 11, or 6 years), the child's (explicit) request, and the opinion of the parents varied. Two hypothetical cases were also presented to 125 general practitioners and 208 clinical specialists. RESULTS: Most pediatricians were willing to increase morphine in all cases. A total of 48% to 60% of pediatricians were willing to use lethal drugs in children at the child's request, when the parents agreed; when parents requested ending of life of their unconscious child, 37% to 42% of pediatricians were willing; 13% to 28% of pediatricians were willing when parents did not agree with their child's request. General practitioners and clinical specialists were as willing as pediatricians to use lethal drugs at the child's request, but less willing to grant a request of parents for their unconscious child. CONCLUSIONS: Many Dutch pediatricians are willing to use potentially life-shortening or lethal drugs for children. The legal limit of 12 years, as the age under which voluntary euthanasia is forbidden, is not fully supported by Dutch physicians.

Medical end-of-life decisions made for neonates and infants in the Netherlands, 1995-2001.

End-of-life decision-making for severely affected infants might be influenced by technical advances and societal debates. In 2001, we assessed the proportion of deaths of infants younger than 1 year that were preceded by end-of-life decisions, by replicating a questionnaire study from 1995. This proportion increased from 62% to 68% (weighted percentages), but the difference was not significant. Most of these decisions were to forgo life-sustaining treatment. Decisions to actively end the lives of infants not dependent on life-sustaining treatment remained stable at 1%. The practice of end-of-life decision-making in neonatology of 2001 has changed little since 1995.

Physician reports of terminal sedation without hydration or nutrition for patients nearing death in the Netherlands.

BACKGROUND: Terminal sedation in patients nearing death is an important issue related to end-of-life care. OBJECTIVE: To describe the practice of terminal sedation in the Netherlands. DESIGN: Face-to-face interviews. SETTING: The Netherlands. PARTICIPANTS: Nationwide stratified sample of 482 physicians; 410 responded and 211 of these reported characteristics of their most recent terminal sedation case. MEASUREMENTS: Physician reports of frequency of terminal sedation (defined as the administration of drugs to keep the patient in deep sedation or coma until death, without giving artificial nutrition or hydration), characteristics of the decision-making process, drugs used, the estimated life-shortening effect, and frequency of euthanasia discussions. RESULTS: Of respondents, 52% (95% CI, 48% to 57%) had ever used terminal sedation. Of the 211 most recent cases, physicians used terminal sedation to alleviate severe pain in 51% of patients (CI, 44% to 58%), agitation in 38% (CI, 32% to 45%), and dyspnea in 38% (CI, 32% to 45%). Physicians reported discussing with patients the decision to use deep sedation in 59% of the 211 most recent cases (CI, 52% to 66%) and the decision to forgo artificial nutrition or hydration in 34% (CI, 28% to 41%). Hastening death was partly the intention of the physician in 47% (CI, 41% to 54%) of cases and the explicit intention in 17% (CI, 13% to 22%) of cases. LIMITATIONS: The generalizability of physician reports about their most recent cases to all terminal sedation cases is uncertain. In addition, the findings are subject to recall bias and may not apply to other geographic settings. CONCLUSIONS: Terminal sedation precedes a substantial number of deaths in the Netherlands. In about two thirds of most recently reported cases, physicians indicated that in addition to alleviating symptoms, they intended to hasten death.

Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001.

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.