11 End of life: more quality and less suffering through anticipatory planning

The study recruited severely ill, German-speaking patients who were receiving home care in the Canton of Bern. The patients, their family carers and health professionals working with them were surveyed on their perceptions of safety at home, quality of life, health status and medical care. The same survey was carried out three times – before, after two weeks and after two months of additional care by a specialised home-based palliative care team. In addition, a sample of patients and family carers were interviewed and a review of the literature on the impact of home-based palliative care on costs and healthcare service utilisation was conducted.

At the end of life, patients and their families need answers to questions such as: “What can I do if I experience complications at home?” or “How much time do I have left?” Early planning for the last phase of life in conjunction with general practitioners and specialist palliative home care teams improves patients’ quality of life and care. Regrettably, this kind of planning takes place much too infrequently, increasing the risk of unnecessary stress, insecurity and medical interventions during the final days of life.

The aim of the study was to find out whether adding specialised palliative care to the normal home-based care provided to severely ill patients increases patients' sense of security, improves the satisfaction levels of patients, family carers and general practitioners, leads to more people making living wills and reduces use of other healthcare services.

The study showed that patients who are cared for by a specialised home palliative care team are more likely to make a living will. The survey of patients showed that they were satisfied with the care provided by the specialised palliative care team. The professional, patient-centred care and the fact that the team were reachable around the clock strengthened their feeling of security in their own home. Patients also emphasised the importance of their discussions with the professionals. The care planning they received enabled patients and relatives to discuss uncertainties regarding their present situation and ongoing treatment decisions. This also reinforced their sense of security. Furthermore, the review of the scientific literature found that providing specialised home-based palliative care can reduce the overall cost of healthcare.

The patients, family carers and health professionals involved were very satisfied with their experience of specialised home-based palliative care. Such care also yields various benefits, such as improved end-of-life planning in the form living wills, an increased sense of security for patients and a potential reduction in healthcare costs. Therefore, the introduction of specialised home palliative care teams seems to be a valuable and, in view of the increasing staff shortage in hospital and nursing institutions, necessary part of supplementing standard care of severely ill patients in the canton of Bern.

The Bern Primary Palliative Care Trial (Bern-PPCT): A cluster trial of palliative needs assessment and care in general practice