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Objective: To describe awareness, use and supportiveness for physicians of three practice guidelines on medical end-of-life decisions, and to identify factors associated with increased awareness of these guidelines., Methods: Questionnaires were sent to 793 physicians from 12 hospitals in 2005 (response 52%)., Results: Most physicians were aware of the existence of the practice guidelines for euthanasia (75%) and do-not-resuscitate decisions (63%), and 35% were aware of the existence of the guidelines for palliative sedation. Physicians who had read the guidelines and had been in a situation in which they had to consider a euthanasia request, 88% had used the guidelines for euthanasia; corresponding figures are 92% for do-not-resuscitate and 100% for palliative sedation. When used, almost all physicians felt the guideline had been supportive. More positive attitudes towards guidelines and involvement in guideline development were associated with increased awareness of the presence of guidelines., Conclusion: It appears that practice guidelines on medical end-of-life decisions are useful for physicians: when they are aware of the presence of such guidelines in their institution, they gain support when using them., Practice Implications: Health care institutions should be encouraged to disseminate guidelines among caregivers, and also involve them in the development of the guidelines., (Copyright 2009 Elsevier Ireland Ltd. All rights reserved.)

Objectives: The aims of this study were to investigate: (1) opinions of medical students regarding quantity and content of education on end-of-life care in the curriculum, (2) medical students' knowledge of different aspects of the euthanasia act, and (3) factors associated with positive opinions about the quantity and content of education on end-of-life care in the curriculum., Methods: A total of 204 medical students received a questionnaire; 176 completed it (response rate, 86%)., Results: Approximately half of the students (55%) considered the quantity of end-of-life care education in the curriculum moderate; 35% rated it as good. Half of the students rated the content of end-of-life care education as moderate (50%); 47% rated it as good. Fourteen percent of the students gave correct answers to 6 or 7 of the 8 questions about the euthanasia act. Students who took the elective course "Terminal and Palliative Care," students who had experience with a patient requesting euthanasia and physician-assisted suicide in their personal lives, and students with more knowledge of the euthanasia act were more positive about the quantity of end-of-life care education. Students who completed fewer clerkships and totally agreed with the statement, "Everyone has the right to decide about their own life and death" were more positive about the content on end-of-life care education., Conclusions: The data of this study suggest that more attention can and should be paid to education on end-of-life care in the medical curriculum, so students are well prepared to provide adequate end-of-life care.

Objectives: To describe how Dutch healthcare institutions develop and disseminate institutional practice guidelines on medical end-of-life decisions and policy statements on euthanasia and physician-assisted suicide (EAS) to relevant parties, and to describe supportiveness of EAS guidelines experienced by Dutch physicians., Methods: Questionnaires to all Dutch health care institutions in 2005. Questionnaire to sample of Dutch clinical specialists and nursing home physicians., Results: In most health care institutions, physicians (79%), ethics committees (79%), board of directors (64%) and nurses (61%) were involved in the development of guidelines. The Euthanasia Act and national guidelines were the most frequently reported sources for the development (73% and 71%, respectively). Not all institutions disseminated their written EAS policy statements and practice guidelines on medical end-of-life decisions to all relevant parties. Dutch physicians who reported the presence of a written guideline for EAS in their institution, felt supported by it in their decision-making after a patient's request for EAS., Conclusions: It is recommended that more health care institutions pay attention to the dissemination of their policy statements and practice guidelines to relevant parties. This will only lead to improvement in medical practice if this is accompanied by efforts to also stimulate the use of guidelines in practice.

Objective: To investigate the occurrence and predictors of interdisciplinary cooperation of GPs with other caregivers in palliative care at home., Design: In a prospective study among 96 general practices, the GPs involved identified all dying patients during the study period of 12 months. The GPs received an additional post-mortem questionnaire for each patient who died during the study period, and registered the healthcare providers with whom they cooperated. Multivariable logistic regression analysis was used to identify the predictors of GP cooperation with other caregivers., Setting: Second Dutch National Survey in General Practice., Subjects: A total of 743 patients who received palliative care according to their GP., Main Outcome Measures: Interdisciplinary cooperation between GP and other healthcare providers., Results: During the study period, 2194 patients died. GPs returned 1771 (73%) of the questionnaires. According to the GPs, 743 (46%) of their patients received palliative care. In 98% of these palliative care patients, the GP cooperated with at least one other caregiver, with a mean number of four. Cooperation with informal caregivers (83%) was most prevalent, followed by cooperation with other GPs (71%) and district nurses (63%). The best predictors of cooperation between GPs and other caregivers were the patient's age, the underlying disease, and the importance of psychosocial care., Conclusion: In palliative care patients, GP interdisciplinary cooperation with other caregivers is highly prevalent, especially with informal caregivers and other primary care collaborators. Cooperation is most prevalent in younger patients, patients with cancer as underlying disease, and if psychosocial care is important.

Most people with an incurable disease prefer to stay and die at home, cared for by their general practitioner (GP). This paper aims at describing the prevalence of symptoms in patients receiving palliative care at home. Within the framework of a nation wide survey of general practice in the Netherlands, GPs received a questionnaire for all patients who died within the 1-year survey period to determine whether patients received palliative care (n = 2,194). The response rate was 73% (n = 1,608), and 38% of these patients received palliative care until death. Information regarding encounters during the last 3 months of life was derived from the records kept by the GPs. Digestive symptoms (59%) and pain (56%) were the most prevalent. The total number of symptoms per patient was higher in cancer patients (11.99) than in non-cancer patients (7.62). Not reported in previous studies were musculoskeletal symptoms (20%) and chronic ulcer (18%). Concluding, this showed that Dutch GPs encounter a diversity and wide range of symptoms in palliative care. To face these complex challenges in patients receiving palliative care at home, GPs have to be trained as well as supported by specialized palliative care consultants.

Background and Aims: In many patients with dementia, the oral intake of fluids and nutrients becomes insufficient and a decision has to be made whether to start artificial nutrition or hydration (ANH). This study examines the incidence of ANH in nursing-home patients with dementia in The Netherlands, the methods of administration used, patient characteristics, and the characteristics of the ANH decision- making process., Methods: In June 2001, a postal questionnaire was sent to all nursing-home physicians (NHPs) (n=1054) in The Netherlands. The response rate was 77%., Results: Of the NHPs, 39% had started ANH during the 1-year study period, mostly by hypodermoclysis. As calculated from the total number of patients in The Netherlands, the incidence density for ANH in demented nursing-home patients was 3.4 per 100 patient-years. The most important considerations in taking this decision were the patient's physical condition, the expected result of rehydration, and the (presumed) wishes of the patient. Decisions to start hydration resembled decisions to start nutrition, but more frequently concerned incompetent patients with an intercurrent infectious disease., Conclusions: Compared with the USA literature, ANH is practised less in The Netherlands. This practice conforms to the prevailing treatment policy endorsed by the Dutch Association of Nursing-Home Physicians. In starting nutrition and/or hydration, an agreement about the (limited) duration of ANH is generally made, and the NHPs generally involve relatives and nurses in the decision-making process. Almost always, all parties involved agreed with decisions taken.

Objectives: The aim of this study was to identify the direct causes of death and to evaluate the presence of burdensome symptoms in the last two days of life of terminally ill nursing home (NH) patients., Methods: Prospective study of patients with a maximum life-expectancy of six weeks in 16 nursing homes representative for The Netherlands (n = 463). Symptoms were measured after death in conscious patients with the Edmonton Symptom Assessment Scale (ESAS) and the Resident Assessment Instrument Minimum Data-Set Palliative Care (RAI MDS-PC draft 1.8). Direct causes of death were assessed in all patients., Results: Most patients died from pneumonia, renal failure or dehydration. Loss of consciousness was common. The prevalence of burdensome symptom(s) at 48 and 24 hours before death was 51.3 and 28.4%, respectively., Conclusion: In practice, it appears that, for many patients, the last days of life are spent unconscious or conscious with one or more burdensome symptom(s), which suggests the potential for improvement of symptom management.

Objective: For many nursing home patients in the advanced stages of dementia, a decision to start or forgo treatment has to be taken at the end of their life. It is very important for the peace of mind of all involved in such decision-making that there is agreement on which decision is in the best interest of the patient. It is thus important to investigate the attitude of physicians, nurses and relatives towards medical end-of-life decisions concerning patients with dementia, so that the policy in nursing homes can be tuned to stimulate dialogue and understanding between all parties., Methods: Fifteen statements about artificial nutrition and hydration (ANH), advance directives, hastening death, self-determination and euthanasia, and nursing home policy were presented to physicians, nurses and relatives of nursing home patients suffering from dementia., Results: In general, physicians, nurses and relatives agree on many aspects of end-of-life decision-making for nursing home patients with dementia. However, on some issues the outcomes of the decision-making may differ. Relatives attach more importance to advance directives than physicians, and have more permissive attitudes towards hastening death., Conclusion: Although physicians, nurses and relatives are all guided by the best interest of the patient, it seems that differences in religious beliefs, perspective of the patient, and responsibility can lead to different attitudes towards end-of-life decisions., Practice Implications: Physicians should discuss end-of-life decisions more openly. Physicians should be aware of the influences on attitudes and incorporate them into communication about end-of-life decisions.

In the USA, the use of advance directives (ADs) has been studied extensively, in order to identify opportunities to increase their use. We investigated the prevalence of ADs and the factors associated with formulation of an AD in The Netherlands, using samples of three groups: the general population up to 60 years of age, the general population over 60 years of age, and the relatives of patients who died after euthanasia or assisted suicide. The associated factors were grouped into three components: predisposing factors (e.g. age, gender), enabling factors (e.g. education) and need factors (e.g. health-related factors). We found that living wills had been formulated by 3% of younger people, 10% of older people, and 23% of the relatives of a person who died after euthanasia or assisted suicide. Most living wills concerned a request for euthanasia. In all groups, 26-29% had authorized someone to make decisions if they were no longer able to do so themselves. Talking to a physician about medical end-of-life treatment occurred less frequently, only 2% of the younger people and 7% of the older people had done so. Most people were quite confident that the physician would respect their end-of-life wishes, but older people more so than younger people. In a multivariate analysis, many predisposing factors were associated with the formulation of an AD: women, older people, non-religious people, especially those who lived in an urbanized area, and people with less confidence that the physician would respect their end-of-life wishes were more likely to have formulated an AD. Furthermore, the enabling factor of a higher level of education, the need factor of contact with a medical specialist in the past 6 months, and the death of a marital partner were associated with the formulation of an AD.

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.

We investigated the drugs used in the alleviation of pain and symptoms (APS) with a possible life-shortening side effect in six European countries' end-of-life care. We sent mail questionnaires to physicians who signed a representative sample of death certificates in each country. APS with a possible life-shortening effect occurred from 19% of all deaths in Italy to 26% in Denmark. Physicians usually administered opioids (from 76% of APS cases in Italy to 96% in The Netherlands), but the type of opioids and administration practice differed markedly between countries. The doses of opioids given in the last 24 hours also varied significantly and were usually lower than 300 mg oral morphine equivalent (from 83% of cases in Belgium to 93% in Sweden). The highly variable results bring into question whether existing guidelines for pain relief were applied appropriately and to what extent unfounded concerns about the possible life-shortening effect of opioids resulted in less than optimal symptom management in end-of-life care.

Continuous deep sedation (CDS) is sometimes used to treat refractory symptoms in terminally ill patients. The aim of this paper was to estimate the frequency and characteristics of CDS in six European countries: Belgium, Denmark, Italy, The Netherlands, Sweden, and Switzerland. Deaths reported to death registries were sampled and the reporting doctors received a mailed questionnaire about the medical decision making that preceded the death of the patient. The total number of deaths studied was 20,480. The response rate ranged between 44% (Italy) and 75% (The Netherlands). Of all deaths, CDS was applied in 2.5% in Denmark and up to 8.5% in Italy. Of all patients receiving CDS, 35% (Italy) and up to 64% (Denmark and The Netherlands) did not receive artificial nutrition or hydration. Patients who received CDS were more often male, younger than 80 years old, more likely to have had cancer, and died more often in a hospital compared to nonsudden deaths without CDS. The high variability of frequency and characteristics of CDS in the studied European countries points out the importance of medical education and scientific debate on this issue.

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.

Questionnaires were mailed to 1777 members of the Dutch public (response: 78%), measuring to what extent respondents appreciate life-prolonging treatment, even if it would seriously impair their quality of life. The association between these attitudes and personal characteristics and initiatives to engage in advance care planning was analyzed. About one third of the respondents prefers quality of life at the expense of survival, another third prefers length of life regardless of impaired quality, whereas the remaining third did not express a clear attitude towards quality or length of life. People who were younger, male, having children, having religious beliefs, and without a history of serious illness were more likely to strive for length, whereas the reverse associations were found for striving for quality. The latter was related to undertaking initiatives to engage in advance care planning. Awareness of differences in attitudes towards life-prolonging treatment within the public may improve communication about appropriate end-of-life care.

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.

Many older people die in hospitals, whereas research indicates that they would prefer to die at home. Little is known about the factors associated with place of death. The aim of the present study was to investigate the care received by older people in the last 3 months of their life, the transitions in care and the predictors of place of death. In this population-based study, interviews were held with 270 proxy respondents to obtain data on 342 deceased participants (79% response rate) in the Longitudinal Aging Study Amsterdam. In the last 3 months of life, the utilisation of formal care increased. Half of the community-dwelling older people and their families were confronted with transitions to institutional care, in most cases to hospitals. Women relied less often on informal care only, and were more dependent than men on institutional care. For people who only received informal care, the odds of dying in a hospital were 3.68 times the odds for those who received a combination of formal and informal home care. The chance of dying in a hospital was also related to the geographical region. The authors argue that future research is needed into the association that they found in the present study, i.e. that decedents who received both formal and informal care were more likely to die at home. In view of the differences found in geographical region in relation to place of death, further investigation of regional differences in the availability and accessibility of care is indicated.

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.

Unlabelled: The aim of this study was to assess the Palliative care Outcome Scale (POS) for terminally ill nursing home (NH) patients in the Netherlands., Methods: A prospective observational study of patients with a life-expectancy of six weeks or less in 16 Dutch NHs. NH staff rated the patient characteristics and measured palliative care with the POS, including items on physical, psychosocial, informational, spiritual and practical aspects., Results: POS nonscores (not applicable; unknown) were mainly found in the psychosocial and spiritual domains, particularly in patients with dementia. Mean scores for non-demented patients and patients with dementia were favourable for the majority of the POS items., Conclusion: According to the NH staff, fairly good quality care was provided, but the psychosocial and spiritual aspects of care need to be addressed more in the last days of the dying NH patient's life. The results indicate that the POS is an appropriate instrument to assess not only cancer patients, but also non-cancer and (moderately) severely demented patients.

Goals: The aims of this study were to describe the symptoms, their treatment during the final months of life of terminally ill cancer patients and to assess characteristics of the dying process., Patients and Methods: We used a prospective study design. From a representative sample of physicians who participated in a study of end-of-life decision making, we asked whether they were treating a patient with cancer whose treatment was no longer aimed at cure, whose life expectancy was probably longer than 1 week but no longer than 3 months and who would probably continue to be treated by the same physician until their death; 85 physicians completed a monthly questionnaire until patients' deaths., Results: Patients were confronted with an increasing amount of symptoms during the final months of their life. Fatigue, loss of appetite, dependency and feeling unwell were the most prevalent symptoms. Physical symptoms were more often treated than psychosocial symptoms. The number of medical disciplines involved in the patient's care decreased in the period before death, but the number of informal caregivers increased; 73% of patients died peacefully. A peaceful death was impeded by feelings of anxiety and loneliness but promoted by the involvement of children in their patients' care., Conclusion: The results give insight into the nature of suffering and factors related to the dying process of terminally ill cancer patients. Attention to psychosocial well-being and to the need to be with loved ones appears to be essential for patients' quality of life.

Background: Nursing homes (NHs) are less well studied than hospices or hospitals as a setting for terminal care. For more targeted palliative care, more information is needed about the patient characteristics, symptoms, direct causes and underlying diseases, and incidence of terminally ill NH patients. These aspects are examined in this study., Methods: Prospective observational cohort study in 16 NHs representative of the Netherlands. All long-term care patients assessed by an NH physician to have a life expectancy of 6 weeks or less were enrolled in our study., Results: The terminal disease phase was marked with symptoms of low fluid and food intake, general weakness, and respiratory problems or dyspnea. Direct causes of these conditions were diseases of the respiratory system (mainly pneumonia) and general disorders (eg, cachexia). The 2 main underlying diseases of the terminal phase were mental and behavioral disorders and diseases of the circulatory system. Cancer was the underlying disease in only 12% of the patients. Patients with cancer showed a different pattern of symptoms than those without cancer. Per 100 beds per year, 34 NH patients entered the terminal phase. Most patients (82.9%) died within 7 days of inclusion., Conclusions: For patients without cancer in Dutch NHs, the terminal disease phase is difficult to predict, and once diagnosed, patient survival time is short. A better identification of the symptom burden might improve the prognostication of life expectancy in elderly patients.

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.

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.

Minimal care requirements were drafted for units for short-term palliative care for terminally ill patients in nursing homes in The Netherlands. The requirements were evaluated by (a) determining to what extent ten units were able to meet these requirements and (b) which facilitators and barriers influenced the implementation of the units. Staff members of the ten units were interviewed using a semi-structured interview protocol six months after the units were established. The results show that on average 69 percent of the requirements were met. Requirements for expertise development were best met (77 percent), and requirements for personnel and team were met least (58 percent). Facilitators for meeting the requirements included development of new housing or renovation, being part of a care provider network, and onetime subsidies. Barriers included lack of funds and shortage of staff. Further development of the requirements based on the results of this study by a committee of experts was advised.

A guideline was developed to support decision-making about whether or not to treat pneumonia curatively in psychogeriatric (demented) nursing home patients. This guideline was developed as a 'checklist of considerations', primarily of the ethical and legal aspects of decision-making. Nursing home physicians used and evaluated the list. The list's acceptance was assessed by measuring the frequency of the list's use, and judgements of the list's contents and 'usefulness'. The list was used in 50 out of 58 participating nursing homes, in 47% of the 489 psychogeriatric patients in whom pneumonia occurred. The list was found somewhat to very useful to support decision-making in 47% of 107 individual patients. For the targeted patient category as a whole, 85% of 48 physicians who were asked retrospectively (one physician per home) found the list somewhat to very useful. The content of the list was judged favourably. In conclusion, the nursing home physicians accepted the considerations of the checklist as a basis for decision-making on whether or not to treat pneumonia curatively in psychogeriatric patients. In the future, the format of the list can be adapted for use in diverse clinical situations. Suggestions are provided to increase user friendliness and usefulness.

We evaluated a new guideline, in the form of a "checklist of considerations," to support end-of-life decision making in the treatment of demented patients with pneumonia. Questionnaires were sent to nursing home physicians (NHPs) in The Netherlands at three times: before implementation of the checklist (concerning 91 individual patients), during use of the checklist (concerning another 107 individual patients), and after data collection (concerning the targeted patient category of demented nursing home patients with pneumonia as a whole). In the last questionnaire, one NHP from each nursing home (n = 55 NHPs) gave his or her general opinion about the checklist. We measured the usefulness of the checklist in supporting decision making and its frequency of actual use. The NHPs accepted the contents of the checklist for use in the targeted patient category. It was used in 46% of the incident cases of pneumonia. The checklist was considered more useful in supporting decision making for the targeted patient category (85% of the NHPs) than for the individual patient (47%). Possible explanations for this discrepancy in "usefulness" include the difference in the nature of the outcome measures and the fact that the checklist was used more frequently for the "easier cases." Information on individual patient level, patient category level, and nursing home and NHP characteristics is used to suggest checklist improvements.

For 3 nursing home patients in bad physical and psychiatric condition and with a poor prognosis, 2 women aged 86 and 84 years and 1 man aged 55 years, it was decided to forgo artificial feeding and hydration, after which they passed away quietly within about a week. It appears that dying in that way does not cause much suffering. Before the decision of forgoing is taken the following factors should be considered: the cause of a diminishing food and fluid intake, the severity and prognosis of underlying diseases and the (supposed) wishes of the patient. Therefore an open communication with relatives and nurses is necessary.

Background. In the Netherlands, GPs performed euthanasia or physician-assisted suicide (EAS) in ∼1 of 10 end-of-life cancer patients in their care. Of all explicit requests for EAS directed at GPs, ∼44% resulted in EAS. However, the suffering of patients who do and do not request EAS has never been studied. An important barrier for such research is the low prevalence of end-of-life cancer patients per practice (on average two/year). We studied whether it is possible to recruit end-of-life cancer patients, following-up for requests for EAS (if any), in an interview study in general practice, whether selection occurred and which were the threats and opportunities to recruitment. Our target was to recruit at least 50 patients.Methods. Characteristics of all eligible patients were monitored.Results. One in every three eligible patients were recruited by 44 GPs in a 3-year inclusion period, resulting in 64 patients in the interview study with follow-up until death. The prevalence of explicit requests for EAS was higher (27%; P = 0.026) in the interview sample, and the presence of a depressed mood according to the GP was lower (5%; P = 0.013) than in the sample with eligible but not participating patients.Conclusions. Recruitment of slightly more than the minimal target number of end-of-life cancer patients in this study in general practice was realized. Monitoring of all eligible patients permitted to evaluate the selection which occurred. Recruitment through GPs who were direct professional colleagues of one of the researchers was a positive recruitment factor. [ABSTRACT FROM AUTHOR]

Background. In the Netherlands, many (45%) cancer patients die at home, in the care of GPs. About 1 out of 10 end-of-life cancer deaths is hastened by GPs through euthanasia or physician-assisted suicide. However, the relationship between depression and requests for euthanasia has never been prospectively studied directly in primary care.Objective. This study aimed to assess the prevalence of depression in end-of-life cancer patients requesting euthanasia in primary care, as well as to assess the relationship between depression and requesting euthanasia.Methods. Primary care patients with incurable cancer and an estimated life expectancy of half a year or shorter were interviewed every 2 months, using standardized psychometric instruments. Also, non-recruited eligible patients were monitored.Results. Out of 258 eligible patients, 76 patients were recruited, of whom 64 patients were followed up until death. Of these, 27% (n = 17) explicitly requested euthanasia. One patient suffered from major depression. According to the depression subscale of the Hospital Anxiety and Depression Scale, 47% of the patients who explicitly requested euthanasia versus 28% of those without an euthanasia request suffered from a depressed mood at inclusion; the difference was not significant (P = 0.2). Corresponding figures for the last interview before death were 40% and 41% (P = 0.6).Conclusions. Major depression was not a major factor in explicit requests for euthanasia in end-of-life cancer patients in primary care. Further depressed mood was not associated with explicitly requesting euthanasia in this patient group, although statistical underpower cannot be ruled out in this small sample. [ABSTRACT FROM AUTHOR]

Background: Caring for terminally ill patients is a meaningful task, however the patient's suffering can be a considerable burden and cause of frustration. Objectives: The aim of this study is to describe the experiences of general practitioners (GPs) in The Netherlands in dealing with a request for euthanasia from a terminally ill patient. Methods: The data, collected through in-depth interviews, were analysed according to the constant comparative method. Results: Having to face a request for euthanasia when attempting to relieve a patient's suffering was described as a very demanding experience that GPs generally would like to avoid. Nearly half of the GPs (14/30) strive to avoid euthanasia or physician assisted suicide because it was against their own personal values or because it was emotional burdening to be confronted with this issue. They explained that by being directed on promoting a peaceful dying process, or the quality of end-of-life of a patient by caring and supporting the patient and the relatives it was mainly possible to shorten patient's suffering without "intentionally hastening a patient's death on his request". The other GPs (16/30) explained that as sometimes the suffering of a patient could not be lessened they were open to consider a patient's request for euthanasia or physician assisted suicide. They underlined the importance of a careful decision-making process, based on finding a balance between the necessity to shorten the patient's suffering through euthanasia and their personal values. Conclusion: Dealing with requests for euthanasia is very challenging for GPs, although they feel committed to alleviate a patient's suffering and to promote a peaceful death. [ABSTRACT FROM AUTHOR]