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.

[If problems arise during palliative sedation: considerations in sedation in the terminal phase]. / Als problemen optreden bij palliatieve sedatie.

Palliative sedation is increasingly being utilised when patients are close to death. Despite clear guidelines, its implementation is often problematic. In this clinical lesson we describe two patients in whom sedation did not go according to plan. The first case concerns a relative overdose of the medication which resulted in agitation, and the second case concerns the premature initiation of palliative sedation which caused the period of sedation to last too long. Suggestions are made to prevent these problems occurring.

Telephone consultations on palliative sedation therapy and euthanasia in general practice in The Netherlands in 2003: a report from inside.

BACKGROUND: GPs with a special interest and with specific training in palliative medicine (GP advisors) supported professional carers (mostly GPs) through a telephone advisory service. Each telephone call was formally documented on paper and subsequently evaluated. OBJECTIVE: Data from 2003 were analysed independently to reveal how often and in what way palliative sedation and euthanasia were discussed. METHODS: The telephone documentation forms and corresponding evaluation forms of two GP advisors were systematically analysed for problems relating to the role of sedation and/or euthanasia both quantitatively and qualitatively. RESULTS: In 87 (21%) of 415 analysed consultations, sedation and/or euthanasia were discussed either as the presenting question (sedation 26 times, euthanasia 37 times and both 10 times) or arising during discussion (sedation 11 times and euthanasia three times). Qualitative analysis revealed that GPs telephoned to explore therapeutic options and/or wanted specific information. Pressure on the GP (either internal or external) to relieve suffering (including shortening life by euthanasia) had often precipitated the call. On evaluation, 100% of the GPs reported that the advice received was of value in the patient's care. CONCLUSION: GPs caring for patients dying at home encountered complex clinical dilemmas in end-of-life care (including palliative sedation therapy and euthanasia). They valued practical advice from, and open discussion with, GP advisors. The advice often helped the GP find solutions to the patient's problems that did not require deliberately foreshortening life.

The New Millennium Palliative Care Project (2000-2003): the impact of specialised GP advisors.

This study describes a novel type of support for GPs caring for patients dying at home: the establishment and evaluation of a telephone advisory service for GPs, run by GPs with a special interest in palliative care (GPwSIs) in the Netherlands 2000-2003. A growing number of GPs called for advice, 10% during out of hours. Prognosis of the patients was generally short (days to weeks in 70% of cases). Most advice sought by GPs concerned symptom management and on evaluation, 85% of the GPs followed the advice.

Educational needs of general practitioners in palliative care: outcome of a focus group study.

BACKGROUND: The objective of this study was to identify the general practitioner's perception of educational needs in palliative care. METHOD: A qualitative study with focus groups was performed. RESULTS: General practitioners estimate palliative care as an important and valuable part of primary care. Nevertheless, they consider their coordinating role as a course with increasing obstacles. Pain, nausea, dysphagia, delirium, insomnia, anxiety, and depression were mentioned frequently as symptoms difficult to deal with in palliative care. Also, psychosocial issues such as communication, bereavement, and defense mechanisms were subject to discussion in the focus groups. Ethical issues such as euthanasia were mentioned as the most complex subject in palliative care. CONCLUSIONS: General practitioners experience difficulties with their coordinating role in palliative care. With more basic knowledge and skills in communication, but also with consultation, their roles as coordinators of palliative care in primary care will improve. Reflection and deepening of ethical values are necessary conditions for an optimal functioning.