H.R.W. Pasman

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had been granted or performed or had died after the request was refused by the physician or after the patient had withdrawn his or her request.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.

Understanding why older people develop a wish to die: a qualitative interview study.

BACKGROUNDnQuantitative studies in several European countries showed that 10-20% of older people have or have had a wish to die.nnnAIMSnTo improve our understanding of why some older people develop a wish to die.nnnMETHODSnIn-depth interviews with people with a wish to die (n = 31) were carried out. Through open coding and inductive analysis, we developed a conceptual framework to describe the development of death wishes. Respondents were selected from two cohort studies.nnnRESULTSnThe wish to die had either been triggered suddenly after traumatic life events or had developed gradually after a life full of adversity, as a consequence of aging or illness, or after recurring depression. The respondents were in a situation they considered unacceptable, yet they felt they had no control to change their situation and thus progressively gave up trying. Recurring themes included being widowed, feeling lonely, being a victim, being dependent, and wanting to be useful. Developing thoughts about death as a positive thing or a release from problems seemed to them like a way to reclaim control.nnnCONCLUSIONSnPeople who wish to die originally develop thoughts about death as a positive solution to life events or to an adverse situation, and eventually reach a balance of the wish to live and to die.

The End-of-Life Phase of High-Grade Glioma Patients: Dying With Dignity?

BACKGROUNDnIn the end-of-life (EOL) phase, high-grade glioma (HGG) patients have a high symptom burden and often lose independence because of physical and cognitive dysfunction. This might affect the patients personal dignity. We aimed to (a) assess the proportion of HGG patients dying with dignity as perceived by their relatives and (b) identify disease and care factors correlated with dying with dignity in HGG patients.nnnMETHODSnWe approached relatives of a cohort of 155 deceased HGG patients for the study. Participants completed a questionnaire concerning the EOL phase of the patient, covering several subthemes: (a) symptoms and signs, (b) health-related quality of life, (c) decision making, (d) place and quality of EOL care, and (e) dying with dignity.nnnRESULTSnRelatives of 81 patients participated and 75% indicated that the patient died with dignity. These patients had fewer communication deficits, experienced fewer transitions between health care settings in the EOL phase, and more frequently died at their preferred place of death. Relatives were more satisfied with the physician providing EOL care and reported that the physician adequately explained treatment options. Multivariate analysis identified satisfaction with the physician, the ability to communicate, and the absence of transitions between settings as most predictive of a dignified death.nnnCONCLUSIONSnPhysicians caring for HGG patients in the EOL phase should timely focus on explaining possible treatment options, because patients experience communication deficits toward death. Physicians should strive to allow patients to die at their preferred place and avoid transitions during the last month of life.

End-of-Life Communication: A Retrospective Survey of Representative General Practitioner Networks in Four Countries

CONTEXTnEffective communication is central to high-quality end-of-life care.nnnOBJECTIVESnThis study examined the prevalence of general practitioner (GP)-patient discussion of end-of-life topics (according to the GP) in Italy, Spain, Belgium, and The Netherlands and associated patient and care characteristics.nnnMETHODSnThis cross-sectional, retrospective survey was conducted with representative GP networks. Using a standardized form, GPs recorded the health and care characteristics in the last three months of life, and the discussion of 10 end-of-life topics, of all patients who died under their care. The mean number of topics discussed, the prevalence of discussion of each topic, and patient and care characteristics associated with discussions were estimated per country.nnnRESULTSnIn total, 4396 nonsudden deaths were included. On average, more topics were discussed in The Netherlands (mean=6.37), followed by Belgium (4.45), Spain (3.32), and Italy (3.19). The topics most frequently discussed in all countries were physical complaints and the primary diagnosis, whereas spiritual and existential issues were the least frequently discussed. Discussions were most prevalent in The Netherlands, followed by Belgium. The GPs from all countries tended to discuss fewer topics with older patients, noncancer patients, patients with dementia, patients for whom palliative care was not an important treatment aim, and patients for whom their GP had not provided palliative care.nnnCONCLUSIONnThe prevalence of end-of-life discussions varied across the four countries. In all countries, training priorities should include the identification and discussion of spiritual and social problems and early end-of-life discussions with older patients, those with cognitive decline if possible, and those with non-malignant diseases.

End-of-life care in general practice : a cross-sectional, retrospective survey of 'cancer', 'organ failure' and 'old-age/dementia' patients

Background: End-of-life care is often provided in primary care settings. Aim: To describe and compare general-practitioner end-of-life care for Dutch patients who died from ‘cancer’, ‘organ failure’ and ‘old-age or dementia’. Design: A cross-sectional, retrospective survey was conducted within a sentinel network of general practitioners. General practitioners recorded the end-of-life care of all patients who died (1 January 2009 to 31 December 2011). Differences in care between patient groups were analysed using multivariate logistic regressions performed with generalised linear mixed models. Setting/participants: Up to 63 general practitioners, covering 0.8% of the population, recorded the care of 1491 patients. Results: General practitioners personally provided palliative care for 75% of cancer, 38% of organ failure and 64% of old-age/dementia patients (adjusted odds ratio (confidence interval): cancer (reference category); organ failure: 0.28 (0.17, 0.47); old-age/dementia: 0.31 (0.15, 0.63)). In the week before death, 89% of cancer, 77% of organ failure and 86% of old-age/dementia patients received palliative treatments: (adjusted odds ratio (confidence interval): cancer (reference category); old-age/dementia: 0.54 (0.29, 1.00); organ failure: 0.38 (0.16, 0.92)). Options for palliative care were discussed with 81% of cancer, 44% of organ failure and 39% of old-age/dementia patients (adjusted odds ratio (confidence interval): cancer (reference category); old-age/dementia: 0.34 (0.21, 0.57); organ failure: 0.17 (0.08, 0.36)). Conclusion: The results highlight the need to integrate palliative care with optimal disease management in primary practice and to initiate advance care planning early in the chronic disease trajectory to enable all patients to live as well as possible with progressive illness and die with dignity and comfort.

End of life care in high-grade glioma patients in three European countries: a comparative study

Exploring cross-national differences is useful to evaluate whether different patterns of end of life (EOL) care meet patient’s specific needs. This study aimed to (1) compare EOL care processes for high-grade glioma (HGG) patients in three European countries, (2) explore differences in perceived quality of care (QOC), and (3) identify aspects of good QOC in the EOL phase. We analyzed 207 questionnaires from relatives of deceased HGG patients, using a similar retrospective study design in three countries [The Netherlands (nxa0=xa083), Austria (nxa0=xa072) and the UK (nxa0=xa052)], and examined four subthemes: (1) organization of EOL care, (2) treatment preferences, (3) experiences with EOL care, (4) perceived QOC. Three months before death 75xa0% of patients were at home. In all countries, on average, 50xa0% were transferred to a hospital at least once and received effective symptom treatment during the last 3xa0months. In The Netherlands, Austria and UK, respectively, patients most often died at home (60xa0%), in a hospital (41xa0%) or hospice (41xa0%) (pxa0<xa00.001). Advance directives were present in 46xa0% of Dutch, 36xa0% of British and 6xa0% of Austrian patients (pxa0<xa00.001). Fifty-three percent of patients experienced good QOC, irrespective of country. Dying at the preferred place, satisfaction with information provided and effective symptom treatment were independently associated with good QOC. There are various cross-national differences in organization and experiences with EOL care for HGG, but patient’s perceived QOC is similar in the three countries. As symptom treatment was considered effective in only half of HGG patients, and independently predicted good QOC, this particularly needs further improvement in all countries.

Symptoms and medication management in the end of life phase of high-grade glioma patients

During the end of life (EOL) phase of high-grade glioma (HGG) patients, care is primarily aimed at reducing symptom burden while maintaining quality of life as long as possible. In this study, we evaluated the prevalence of symptoms and medication management in HGG patients during the EOL phase. We analyzed disease-specific symptoms, general EOL symptoms, symptom frequency, and medication use at 3xa0months and 1xa0week before death in a cohort of 178 HGG patients, based on questionnaires completed by physicians responsible for EOL care. In addition, information on patient’s perceived quality of care (QOC) was derived from 87 questionnaires completed by patient’s relatives. Somnolence, focal neurological deficits and cognitive disturbances were the most prevalent symptoms during the EOL phase. Overall, disease-specific symptoms occurred more often than general EOL symptoms at both 3xa0months and 1xa0week before death. Somnolence and/or dysphagia were present in 81xa0% of patients whose medication was withdrawn and 96xa0% of patients in whom antiepileptic drugs (AEDs) were withdrawn. One week before death, 65.9xa0% of patients with high symptom frequency experienced good QOC, compared to 87.5xa0% of patients with low symptom frequency (pxa0=xa00.032). Disease-specific symptoms are the main concern in EOL care for HGG patients. Somnolence and dysphagia may hamper the regular oral administration of drugs, and particularly AEDs, during the EOL phase. High symptom frequency at 1xa0week before death negatively affects patient’s perceived QOC.

The Family Physician's Perceived Role in Preventing and Guiding Hospital Admissions at the End of Life: A Focus Group Study

PURPOSE Family physicians play a pivotal role in providing end-of-life care and in enabling terminally ill patients to die in familiar surroundings. The purpose of this study was to explore the family physicians’ perceptions of their role and the difficulties they have in preventing and guiding hospital admissions at the end of life. METHODS Five focus groups were held with family physicians (N= 39) in Belgium. Discussions were transcribed verbatim and analyzed using a constant comparative approach. RESULTS Five key roles in preventing and guiding hospital admissions at the end of life were identified: as a care planner, anticipating future scenarios; as an initiator of decisions in acute situations, mostly in an advisory manner; as a provider of end-of-life care, in which competency and attitude is considered important; as a provider of support, particularly by being available during acute situations; and as a decision maker, taking overall responsibility. CONCLUSIONS Family physicians face many different and complex roles and difficulties in preventing and guiding hospital admissions at the end of life. Enhancing the family physician’s role as a gatekeeper to hospital services, offering the physicians more end-of-life care training, and developing or expanding initiatives to support them could contribute to a lower proportion of hospital admissions at the end of life.

How do general end-of-life treatment goals and values relate to specific treatment preferences? A population-based study

Background: There is a lack of research on the relationship between general end-of-life goals and values and preferences for specific life-sustaining treatments. Aim: To examine agreement between Dutch older people’s general end-of-life goals and specific life-sustaining treatment preferences. Design: Participants identified general end-of-life goals in an interview and preferences for four life-sustaining treatments in hypothetical cancer and dementia scenarios in a separate questionnaire. Agreement between general goals and specific treatment preferences was calculated. Setting/participants: In total, 1818 older people from 11 representative Dutch municipalities participated in the study. Results: In total, 1168 (response rate 73%) answered questions on general end-of-life and specific treatment preferences. Agreement between a desire to live as long as possible, irrespective of health problems, and a preference for life-sustaining treatments ranged from 51% to 76% in cancer and 41% to 60% in dementia scenarios, depending on the treatment. Agreement between a desire for a shorter life, if without major health problems, and a preference to forgo treatments ranged from 61% to 79% in cancer and 75% to 88% in dementia scenarios. Conclusion: For a sizable minority of participants, specific treatment preferences did not agree with their general end-of-life goals. The more frequent desire to forgo treatments in case of dementia than cancer suggests that physical deterioration is more acceptable than cognitive decline. The findings underline the importance of discussing general care goals, different end-of-life scenarios and the risks and burdens of treatments to frame discussions of more specific treatment preferences.

END-OF-LIFE MEDICAL TREATMENT PREFERENCE DISCUSSIONS AND SURROGATE DECISION-MAKER APPOINTMENTS: EVIDENCE FROM ITALY, SPAIN, BELGIUM AND THE NETHERLANDS

Background Making treatment decisions in anticipation of possible future incapacity is an important part of patient participation in end-of-life decision-making. Aim To compare the prevalence of GP-patient end-of-life treatment discussions and patient surrogate appointments in Italy, Spain, Belgium and the Netherlands and examine associated factors. Methods A cross-sectional, retrospective survey was conducted with representative GP networks in four countries. GPs recorded the health and care characteristics in the last 3u2005months of life of patients who died non-suddenly. Prevalences were estimated and between country differences, and country-specific associated patient and care factors, were examined using logistic regressions. Results 4396 non-sudden deaths were included. GP-patient discussion of treatment preferences occurred for 10%, 7%, 25% and 47% of Italian, Spanish, Belgian and of Dutch patients respectively. Furthermore, 6%, 5%, 16% and 29% of Italian, Spanish, Belgian and Dutch patients had a surrogate decision-maker. Despite some country-specific differences, previous GP-patient diagnosis discussions, more frequent GP contact, GP provision of palliative care, the importance of palliative care as a treatment aim and place of death were positively associated with preference discussions or surrogate appointments. A diagnosis of dementia was negatively associated with preference discussions and surrogate appointments. The single most important factor was prior GP-patient diagnosis discussion. Discussion The study revealed a higher prevalence of treatment preference discussions and surrogate appointments in the two northern European countries. Conclusion Delaying diagnosis discussions impedes anticipatory planning, whereas early discussions for all patients, particularly those with cognitive decline, and palliative care provision support patients participation in decision-making.