Hospiz im Park

The article explores the underlying reasons for patients’ self‐perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational phenomenon. We analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted.

Many palliative care patients are admitted to hospital shortly before death even though the acute hospital setting is not considered ideal for end-of-life care (EOLC). This study aimed to evaluate General Practitioners' (GPs') perspective on the frequency of and reasons for hospital referrals of these patients. Cross-sectional survey involving a stratified random sample of 2000 GPs in Switzerland in 2014. GP characteristics, frequency and type of end-of-life transfers, reasons for referrals, confidence in EOLC, and regional palliative care provision were assessed. Multivariate regression analysis was performed to identify the variables associated with frequency of hospital referrals at the end of life. The questionnaire was completed by 579 (31%) GPs. Frequent hospital referrals shortly before death were reported by 38%. GPs were less likely to report frequent hospitalizations when they felt confident in palliative care competencies, especially in anticipation of crisis. GPs were more likely to report frequent hospitalizations as being due to relatives' wishes, difficulties in symptom control, inadequate or absent care network, and the expense of palliative care at home. The results suggest that adequate support of and a care network for palliative patients and their caregivers are crucial for continuous home-based EOLC. Timely recognition of the advanced palliative phase as well as the involvement of well-trained GPs who feel confident in palliative care, together with adequate financial support for outpatient palliative care, might diminish the frequency of transitions shortly before death.

BackgroundIn 2007, a first survey on undergraduate palliative care teaching in Switzerland has revealed major heterogeneity of palliative care content, allocation of hours and distribution throughout the 6 year curriculum in Swiss medical faculties. This second survey in 2012/13 has been initiated as part of the current Swiss national strategy in palliative care (2010 – 2015) to serve as a longitudinal monitoring instrument and as a basis for redefinition of palliative care learning objectives and curriculum planning in our country.MethodsAs in 2007, a questionnaire was sent to the deans of all five medical faculties in Switzerland in 2012. It consisted of eight sections: basic background information, current content and hours in dedicated palliative care blocks, current palliative care content in other courses, topics related to palliative care presented in other courses, recent attempts at improving palliative care content, palliative care content in examinations, challenges, and overall summary. Content analysis was performed and the results matched with recommendations from the EAPC for undergraduate training in palliative medicine as well as with recommendations from overseas countries.ResultsThere is a considerable increase in palliative care content, academic teaching staff and hours in all medical faculties compared to 2007. No Swiss medical faculty reaches the range of 40 h dedicated specifically to palliative care as recommended by the EAPC. Topics, teaching methods, distribution throughout different years and compulsory attendance still differ widely. Based on these results, the official Swiss Catalogue of Learning Objectives (SCLO) was complemented with 12 new learning objectives for palliative and end of life care (2013), and a national basic script for palliative care was published (2015).ConclusionPerforming periodic surveys of palliative care teaching at national medical faculties has proven to be a useful tool to adapt the national teaching framework and to improve the recognition of palliative medicine as an integral part of medical training.

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ObjectiveTo investigate the variations in and intentions of wishes to die (WTD) of palliative care cancer patients.MethodsThirty terminally ill cancer patients, their caregivers and relatives in a hospice, an oncology palliative care ward of a general hospital, and an outpatient palliative care service. 116 semistructured qualitative interviews analyzed by a combined approach using Grounded Theory and Interpretive Phenomenological Analysis.ResultsA WTD is dynamic and interactive. Its subjective phenomenology can be described by three aspects: intentions, motivations, and interactions. In this article, we present a typology of the possible intentions. We identified nine different (ideal) types of intentions that WTD statements might have, other than wishing to live and accepting death. Many WTD statements do not imply a desire to hasten death. The intentions of statements differ according to whether a WTD is related to as imaginary or as an action. Often WTD statements contain several partial wishes, which can be in tension with each other and form a dynamic, sometimes unstable equilibrium.ConclusionsTerminally ill persons' WTD statements differ in their intention, and deeper knowledge about these differences is ethically relevant.

Een aantal decennia geleden vonden we dat de diagnose kanker niet altijd verteld hoefde te worden; artsen wilden ‘niet de hoop wegnemen’. Inmiddels is er een wettelijk kader (WGBO) waarin omschreven wordt hoe patienten geinformeerd moeten worden over hun ziekte. Hierbij wordt groot belang gehecht aan ‘informed consent’. Maar de praktijk voegt zich niet altijd naar de wet, blijkt uit onderstaande casus.

Several years ago I wrote an article in Primary Health Care entitled ‘Who qualifies for palliative care?’ (Thomas 1995). At the time it aimed to raise awareness of the fact that many patients, for example, older people or those with long term medical conditions like heart failure or Parkinson’s disease, were denied appropriate palliative care services. Although it has long been recognised that the principles of palliative care may apply to patients dying from causes other than malignancy, there was reluctance from some quarters to extend palliative care services.