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Paul J van der Maas

Publications and source records attributed to Paul J van der Maas.

At least 19 recordsLinked to original sources
PubMed2007

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.

Adolescent↗
PubMed2006

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.

Aged↗
PubMed2006

Requests to forgo potentially life-prolonging treatment and to hasten death in terminally ill cancer patients: a prospective study.

This study investigates the background and evolution of requests to forgo treatment and hasten death in terminally ill cancer patients. Physicians participating in a nationwide study on end-of-life decision making were asked whether they were treating a terminally ill cancer patient whose life expectancy was longer than 1 week but no longer than 3 months and who they would continue to treat until the patient's death. Of the 120 physicians who had a patient who met the inclusion criteria, 85 (70.8%) completed a questionnaire each month until the patient's death. The questionnaire provided information on the patient's symptoms, concerns, and requests involving end-of-life decisions. Most patients suffered from cancer of the gastrointestinal tract or the respiratory system, and 66% died within 2 months of the initial interview. The prevalence of requests involving end-of-life decisions increased during the last 3 months of a patient's life. The evolution of a request was especially related to an increase in the number of severe symptoms and concerns. Requests to forgo treatment were related to general weakness, whereas loss of dignity was a major reason for requests to hasten death. Physical suffering alone appeared to lead to less drastic requests than suffering blended by concerns and psychological problems leading to requests for hastened death. The results emphasize the importance of gaining insight into the patients' suffering to provide meaningful assistance.

Adult↗
PubMed2006

Physicians' opinions on palliative care and euthanasia in the Netherlands.

BACKGROUND: In recent decades significant developments in end-of-life care have taken place in The Netherlands. There has been more attention for palliative care and alongside the practice of euthanasia has been regulated. OBJECTIVE: The aim of this paper is to describe the opinions of physicians with regard to the relationship between palliative care and euthanasia, and determinants of these opinions. DESIGN: Cross-sectional. SETTING/SUBJECTS: Representative samples of physicians (n = 410), relatives of patients who died after euthanasia and physician-assisted suicide (EAS; n = 87), and members of the Euthanasia Review Committees (ERCs; n = 35). MEASUREMENTS: Structured interviews with physicians and relatives of patients, and a written questionnaire for the members of the ERCs. RESULTS: Approximately half of the physicians disagreed and one third agreed with statements describing the quality of palliative care in The Netherlands as suboptimal and describing the expertise of physicians with regard to palliative care as insufficient. Almost two thirds of the physicians disagreed with the suggestion that adequate treatment of pain and terminal care make euthanasia redundant. Having a religious belief, being a nursing home physician or a clinical specialist, never having performed euthanasia, and not wanting to perform euthanasia were related to the belief that adequate treatment of pain and terminal care could make euthanasia redundant. CONCLUSION: The study results indicate that most physicians in The Netherlands are not convinced that palliative care can always alleviate all suffering at the end of life and believe that euthanasia could be appropriate in some cases.

Adult↗
PubMed2006

Predictors and a remedy for noncompliance with amblyopia therapy in children measured with the occlusion dose monitor.

PURPOSE: Noncompliance is one of the limiting factors in the success of occlusion therapy for amblyopia. Electronic monitoring was used to investigate predictors of noncompliance, and, in a prospective randomized clinical trial, determined the effectiveness of an educational program. METHODS: Compliance was measured electronically during 1 week every 3 months in 310 newly diagnosed amblyopic children. The family's demographic parameters and the child's clinical parameters were assessed for their influence on the level of compliance. In addition to standard orthoptic care, children were randomized to receive an educational cartoon story, reward stickers, and an information sheet for the parents (intervention group), or a picture to color (reference group). These and the electronic device were distributed during home visits by researchers. The primary outcome measure was the percentage of compliance (actual/prescribed occlusion time) in the two groups. The secondary outcome measure was the influence of demographic and clinical factors on compliance. RESULTS: Compliance was associated with parental fluency in the national language, country of origin, level of education, and initial visual acuity of the child. During the first 1-week measurement period children in the intervention group had better compliance than the reference group had (78% +/- 32% vs. 57% +/- 40%; P < 0.0001), and fewer children were not occluded at all (3 vs. 23 in the reference group; P < 0.0001). This difference remained throughout the study period. CONCLUSIONS: Poor parental fluency in the national language, a low level of education, and poor acuity at the start of treatment were predictors of low compliance. An educational program primarily aimed at the child improved compliance and reduced the number of children who did not comply with occlusion at all.

Amblyopia↗
PubMed2006

Preferences of the Dutch general public for a good death and associations with attitudes towards end-of-life decision-making.

BACKGROUND: Euthanasia and other end-of-life decisions are acceptable to the large majority of the Dutch public. Insight in the relationships of such acceptance, with characteristics considered important for a 'good death', may contribute to the understanding of this liberal attitude. METHOD: Questionnaires were mailed to 1777 members of the Dutch public (response: 78%), containing questions relating to a good death, attitudes towards euthanasia, terminal sedation and increasing morphine, and demographics. Associations between characteristics of a good death and attitudes towards these end-of-life decisions were analysed. FINDINGS: Characteristics that were considered important for a good death were: the possibility to say goodbye to loved ones (94%), dying with dignity (92%), being able to decide about end-of-life care (88%), and dying free of pain (87%). Acceptance of euthanasia, terminal sedation and increasing morphine were related to the wish to have a dignified death, and with concerns about burdening relatives with terminal care. Acceptance of euthanasia was also associated with the wish to be able to decide about medical end-of-life treatments and about the moment of death. INTERPRETATION: Besides saying farewell and dying pain free and with dignity, many members of the Dutch public consider values of control and maintenance of independence as important for a good death.

Adult↗
PubMed2005

Information needs of patients with incurable cancer.

GOALS: The aims of this study were to describe to what extent cancer patients with incurable cancer report to have been informed about disease-related topics and how they evaluate the quality of the information giving. PATIENTS AND METHODS: One hundred and twenty-eight patients participated in our study within 2 months after having had a diagnosis of incurable cancer. They filled out a questionnaire and were interviewed personally. We assessed the level of information, information needs and demographic factors, and we registered the type and duration of the cancer, cancer therapy, other types of received care and contacts with health care professionals. Furthermore, we assessed patients' appreciation of the information giving by their health care professionals. MAIN RESULTS: The majority of the patients said to have been informed about treatment options, side effects of their treatment, physical symptoms, where to get help, helpful devices, and diet, whereas less than half of the patients were informed about psychosocial care, euthanasia, and complementary care. Of all patients, 39% felt a need for additional information about topics such as physical symptoms, diet, euthanasia, and alternative or complementary care, whereas 19% would have appreciated extra written information. Most patients (78-88%) were satisfied with the information giving by the clinical specialist, oncology nurses, and non-specialised nurses, but only 63% evaluated the information giving by general practitioners as good. CONCLUSION: We conclude that most patients feel sufficiently informed about important disease-specific issues and are satisfied with the information giving by health care professionals. Nevertheless, a considerable number of patients appreciate additional information.

Aged↗
PubMed2005

Attitudes of patients with incurable cancer toward medical treatment in the last phase of life.

PURPOSE: When cancer has advanced to a stage in which cure becomes unlikely, patients may have to consider the aim of further treatment. We studied the relationship of patients' attitudes toward treatment with advance care planning and the development of these attitudes after diagnosis of incurable cancer. PATIENTS AND METHODS: Patients with incurable cancer were interviewed and asked to fill out a written questionnaire about their attitudes concerning life-prolonging treatment and end-of-life decision making. These questions were repeated after 6 and 12 months. RESULTS: One hundred twenty-two patients (mean age, 64 years; standard deviation, 10.5 years; 53% women) participated in the study. Patients' attitudes toward treatment could be categorized into the following three different profiles: striving for quality of life, striving for length of life, and no clear preference. Patients who were older, more tired, or had less positive feelings and patients who had more often taken initiatives to engage in advance care planning were more inclined to strive for quality of life than others. Patients with a history of cancer of less than 6 months were more inclined to prefer life prolongation than patients with a longer history of cancer. During follow-up, no changes in attitudes toward treatment were found, except for patients with a short history of cancer in whom the inclination to strive for length decreased. CONCLUSION: Patients who appreciate advance care planning were more inclined to strive for quality of life than other patients. Shortly after the diagnosis of cancer, patients typically seem to prefer life-prolonging treatment, whereas quality of life becomes more important when death is nearing.

Advance Care Planning↗
PubMed2005

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.

Adolescent↗
PubMed2005

A cross-national perspective on cost of illness: a comparison of studies from The Netherlands, Australia, Canada, Germany, United Kingdom, and Sweden.

All Western health systems are in search of efficiency. Cost of illness (COI) studies can contribute to the efficiency debate by elucidating the relation between health expenditure and health status and population demography. Since the purpose of COI data being summarized in the OECD Health Data publications is to facilitate cross-national comparisons, it is important to assess the comparability. We compared COI data from six countries at macrolevel of total health expenditure and disaggregated the data from four countries to sectors such as hospitals, drugs, health professionals, and residential care. Although the distribution of health expenditure over major diseases showed similar patterns in all countries, overall comparability was bad. We conclude that the current scope of COI studies is bound to national levels because health care systems dominate the magnitude and distribution of health expenditure. Cross-national comparisons may be possible if data and methods are standardized, and COI estimates are made for a common comparable package.

Cost of Illness↗
PubMed2005

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.

Acute Disease↗
PubMed2005

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.

Adolescent↗
PubMed2005

A comparison of attitudes towards end-of-life decisions: survey among the Dutch general public and physicians.

In The Netherlands, there has been a continuing public debate about the acceptability and regulatory system for medical decision-making concerning the end of life. We studied attitudes of the Dutch general public towards different types of end-of-life decisions in various situations and compared them to attitudes of physicians. Questionnaires were mailed to 1777 members of the Dutch general public (response: 78%). A total of 391 Dutch physicians, including general practitioners, nursing home physicians and clinical specialists, were interviewed in person (response: 81%). In both the survey and physician interviews, questions were asked about attitudes towards active ending of life, terminal sedation, and increasing morphine with premature death as a likely consequence, using hypothetical cases of different patients. By logistic regression analysis, the differences between public and physicians' attitudes were assessed, as well as the associations between attitudes of the general public and their personal characteristics. Acceptance of active ending of life at the request of a terminally ill cancer patient was higher among the general public (85%) than among physicians (64%). For physicians, acceptance decreased to 36% for an incompetent adult, 11% for a patient without a serious disease, and 6% for a patient with dementia. For the general public, these percentages were 63%, 37%, and 62%, respectively. Between both groups, no differences were found in acceptance of terminal sedation and increasing morphine. For the general public, determinants of support for active ending of life were being non-religious, lower education, and having a single household. Acknowledging the observed differences in appreciation of end-of-life decision-making between the general public and physicians is important in doctor-patient communication and in public debate and policymaking. Continued monitoring of practices and informing the general public and policymakers about the clinical and ethical consequences of different types of end-of-life decisions is important.

Adult↗
PubMed2005

Requests for euthanasia or physician-assisted suicide from older persons who do not have a severe disease: an interview study.

OBJECTIVE: To determine how often requests are made for euthanasia and physician-assisted suicide (EAS) in the absence of severe disease and how such requests are dealt with in medical practice in The Netherlands. METHOD: Retrospective interview study. PARTICIPANTS: 125 general practitioners (GPs), 77 nursing home physicians (NHPs), and 208 clinical specialists. RESULTS: In The Netherlands, each year approximately 400 people request EAS, because they are 'weary of life'. Thirty per cent of all physicians have at some time received an explicit request for EAS in the absence of severe disease; 3% of all physicians had granted a request for EAS in such a case. Most requests for EAS to GPs in the absence of severe disease (n = 29) were made by single people aged 80 years and over. While their problems were most frequently of a social nature, 79% had one or more non-severe illnesses. Most GPs refused the request; half of them proposed an alternative treatment, which the patient often refused. Nineteen people who did not receive any treatment persisted in their wish to die; the request for EAS from 5 out of 10 patients who received one or more types of treatment was withdrawn or became less explicit. CONCLUSIONS: Most physicians in The Netherlands refuse requests for EAS in the absence of severe disease. Most patients persist in their request. In an ageing population more research is needed to provide physicians with practical interventions to prevent suicide and to make life bearable and satisfactory for elderly people who wish to die.

Aged↗
PubMed2005

Survival after non-aggressive obstetric management in cases of severe fetal anomalies: a retrospective study.

OBJECTIVE: Obstetricians may choose to refrain from interventions aimed at sustaining fetal life (i.e., non-aggressive obstetric management) when the fetus has an extremely poor prognosis. However, if the infant is then born alive, crucial neonatal management decisions then have to be made. We sought empirical data concerning such perinatal end-of-life decisions. Firstly, to describe survival during delivery and after birth following non-aggressive obstetric management, and secondly, to describe neonatal management in infants born alive after non-aggressive obstetric management. DESIGN: Retrospective descriptive study. SETTING: Tertiary centre. POPULATION: Eighty-one infants born to women who opted for a non-aggressive obstetric management policy because of sonographically diagnosed severe fetal anomaly. METHODS: Data were collected from obstetric and neonatal records, as well as ultrasound reports. MAIN OUTCOME MEASURES: Survival, neonatal management and health status after birth. RESULTS: Relevant data were available for 78/80 (98%) infants. Six (8%) infants died in utero, 16 (21%) died during delivery (11 from cephalocentesis) and 56 (72%) were born alive. Life-sustaining neonatal treatment was initiated in 29 (52%) of the live-born infants. Twenty-three of these 29 (79%) infants died within six months of birth. Of the 27 live-born infants who did not receive neonatal life-sustaining treatment, 25 (93%) died. Eight infants survived; all with severe health problems. CONCLUSION: Life-sustaining neonatal support after non-aggressive obstetric management in the presence of severe fetal malformation has little impact on survival.

Adolescent↗
PubMed2005

Physicians' experiences with demented patients with advance euthanasia directives in the Netherlands.

OBJECTIVES: To estimate the incidence of (compliance with) advance euthanasia directives of patients suffering from dementia in the Netherlands and to gain knowledge about the experiences of physicians. DESIGN: Retrospective interview study. SETTING: Physicians in the Netherlands. PARTICIPANTS: Four hundred ten physicians. MEASUREMENTS: Physicians were interviewed about their demented patients who had an advance euthanasia directive. Nursing home physicians were interviewed more extensively. RESULTS: Approximately 2,200 demented patients with an advance euthanasia directive die annually after being treated by a physician who knows about this directive. In 76% of such cases, compliance with the directive was discussed, but euthanasia was seldom performed. In two-thirds of the cases of demented nursing home patients with an advance euthanasia directive, the physician was able to identify during the course of the disease a situation for which the patient had intended the directive. One-quarter of the nursing home physicians thought that their most recent patient suffered unbearably to a (very) high degree, and half of them thought that the patient suffered hopelessly to a (very) high degree. In three-quarters of the cases, the relatives did not want the nursing home physician to comply with the directive, but they did want to respect the patient's wishes by forgoing life-prolonging treatment, which occurred in approximately 90% of cases. CONCLUSION: Most nursing home physicians think that the suffering of patients with dementia can be unbearable and hopeless as a consequence of dementia, but most physicians do not consider dementia to be grounds for euthanasia, unless perhaps the patient has an additional illness.

Advance Directives↗
PubMed2005

Differences between terminally ill cancer patients who died after euthanasia had been performed and terminally ill cancer patients who did not request euthanasia.

Palliative care, directed at improving the quality of life of terminally ill patients, is generally not aimed at any form of postponing or hastening death. It is possible that high quality palliative care could prevent requests for euthanasia. However, empirical evidence on this issue is scarce. In a national survey of end-of-life medical decisions in The Netherlands the subject of care at the end of life has been addressed. Data on terminally ill cancer patients who died after their request was granted and euthanasia had been performed were compared with those of terminally ill cancer patients who did not request euthanasia. The results show that the prevalence and severity of symptoms e.g., pain, feeling unwell, nausea, was higher in patients who died after their request was granted and euthanasia had been performed. No differences concerning the treatment of symptoms or the care provided were found between the two groups. The results suggest that the practice of euthanasia is mainly related to the patient's suffering.

Adult↗