Clinicians' experiences with cancer patients living longer with incurable cancer: a focus group study in the Netherlands.

AIM: To explore (1) experiences of primary care physicians (PCPs) and oncological medical specialists about providing care to patients living longer with incurable cancer, and (2) their preferences concerning different care approaches (palliative support, psychological/survivorship care support). BACKGROUND: At present, oncological medical specialists as well as PCPs are exploring how to improve and better tailor care to patients living longer with incurable cancer. Our previous study at the in-patient oncology unit showed that patients living longer with incurable cancer experience problems in how to deal with a prognosis that is insecure and fluctuating. To date, it could be argued that treating these patients can be done with a 'palliative care' or a 'survivorship/psychosocial care' approach. It is unknown what happens in actual medical practice. METHODS: We performed multidisciplinary group meetings: 6 focus groups (3 homogenous groups with PCPs (n = 15) and 3 multidisciplinary groups (n = 17 PCPs and n = 6 medical specialists) across different parts of the Netherlands. Qualitative data were analysed with thematic analysis. FINDINGS AND CONCLUSIONS: In the near future, PCPs will have an increasing number of patients living longer with incurable cancer. However, in a single PCP practice, the experience with incurable cancer patients remains low, partly because patients often prefer to stay in contact with their medical specialist. PCPs as well as medical specialists show concerns in how they can address this disease phase with the right care approach, including the appropriate label (e.g. palliative, chronic, etc.). They all preferred to be in contact early in the disease process, to be able to discuss and take care for the patients' physical and psychological well-being. Medical specialists can have an important role by timely referring their patients to their PCPs. Moreover, the disease label 'chronic' can possibly assist patients to live their life in the best possible way.

From Advance Euthanasia Directive to Euthanasia: Stable Preference in Older People?

OBJECTIVES: To determine whether older people with advance directive for euthanasia (ADEs) are stable in their advance desire for euthanasia in the last years of life, how frequently older people with an ADE eventually request euthanasia, and what factors determine this. DESIGN: Mortality follow-back study nested in a cohort study. SETTING: The Netherlands. PARTICIPANTS: Proxies of deceased members of a cohort representative of Dutch older people (n = 168) and a cohort of people with advance directives (n = 154). MEASUREMENTS: Data from cohort members (possession of ADE) combined with after-death proxy information on cohort members' last 3 months of life. Multiple logistic regression analysis was performed on determinants of a euthanasia request in individuals with an ADE. RESULTS: Response rate was 65%. One hundred forty-two cohort members had an ADE at baseline. Three months before death, 87% remained stable in their desire for euthanasia; 47% eventually requested euthanasia (vs 6% without an ADE), and 16% died after euthanasia. People with an ADE were more likely to request euthanasia if they worried about loss of dignity. CONCLUSION: The majority of older adults who complete an ADE will have a stable preference over time, but an advance desire for euthanasia does not necessarily result in a euthanasia request. Writing an ADE may reflect a person's need for reassurance that they can request euthanasia in the future.

Primary care patients hastening death by voluntarily stopping eating and drinking.

PURPOSE: Little is known about the role family physicians play when a patient deliberately hastens death by voluntarily stopping eating and drinking (VSED). The purpose of this study was to gain more insight for family physicians when confronted with patients who wish to hasten death by VSED. We aimed to describe physicians' involvement in VSED, to describe characteristics and motives of their patients, and to describe the process of VSED in terms of duration, as well as common symptoms in the last 3 days of life. METHODS: We undertook a survey of a random national sample of 1,100 family physicians (response rate 72%), and 500 of these physicians received questions about their last patient who hastened death by VSED. RESULTS: Of the 978 eligible physicians, 708 responded (72.4%); 46% had cared for a patient who hastened death by VSED. Of the 500 physicians who received the additional questions, 440 were eligible and 285 (64.8%) responded; they described 99 cases of VSED. Seventy percent of these patients were aged older than 80 years, 76% had severe disease (27% with cancer), and 77% were dependent on others for everyday care. Frequent reasons for the patients' death wish were somatic (79%), existential (77%), and dependence (58%). Median time until death was 7 days, and the most common symptoms before death were pain, fatigue, impaired cognitive functioning, and thirst or dry throat. Family physicians were involved in 62% of cases. CONCLUSIONS: Patients who hasten death by VSED are mostly in poor health. It is not unlikely for family physicians to be confronted with VSED. They can play an important role in caring for these patients and their proxies by informing them of VSED and by providing support and symptom management during VSED.

Reducing questionnaire length did not improve physician response rate: a randomized trial.

OBJECTIVES: To examine the effect of reducing questionnaire length on the response rate in a physician survey. STUDY DESIGN AND SETTING: A postal four double-page questionnaire on end-of-life decision making was sent to a random sample of 1,100 general practitioners, 400 elderly care physicians, and 500 medical specialists. Another random sample of 500 medical specialists received a shorter questionnaire of two double pages. After 3 months and one reminder, all nonresponding physicians received an even shorter questionnaire of one double page. RESULTS: Total response was 64% (1,456 of 2,269 eligible respondents). Response rate of medical specialists for the four double-page questionnaire was equal to that of the two double-page questionnaire (190 and 191 questionnaires were returned, respectively). The total response rate increased from 53% to 64% after sending a short one double-page questionnaire (1,203-1,456 respondents). CONCLUSION: The results of our study suggest that reducing the length of a long questionnaire in a physician survey does not necessarily improve response rate. To improve response rate and gather more information, researchers could decide to send a drastically shortened version of the questionnaire to nonresponders.