The right to refuse treatment at the end of life is explicitly expressed in Section 4 – 9 of the Patients’ and Users’ Rights Act. To fulfil this right, a conversation must take place with patients while they are still capable of it. Advance directives by patients in the form of living wills – written declarations which they have drawn up – are not legally binding in Norway, and there is no clear obligation to elucidate patients’ wishes in advance. However, in Section 4 – 6 of the Norwegian Patients’ and Users’ Rights Act, the duty to take account of what the patient would have presumably given permission for is made explicit.
Studies have not always been able to demonstrate that living wills have an impact on the treatment the patient receives (1) – (4). A controlled study on improved advance communication to patients found no improvement in the quality of end of life care. The process of dying was mechanically supported, painful and prolonged to an equal extent for the intervention group as for the control group (5).
Other studies have nevertheless demonstrated an association between the treatment that patients had said they wanted at the end of life and the treatment they received (6). This applies to dementia patients (7), hospice patients (8) and patients aged 80 years or more who were hospitalised on medical wards (9). In these studies, advance care planning discussions resulted in fewer hospitalisations and better quality of life at the end of life. One of the studies also showed an association between advance care planning discussions and reduced stress, anxiety and depression among next of kin (9). The planning process is valuable in itself for patients and their next of kin (10).
The Norwegian Directorate of Health guidelines Decision-making processes in the limitation of life-prolonging treatment recommend preparatory discussions in situations in which there is a risk of serious complications or at the end of life. In a large meta-analysis, Mullick et al. recommend advance planning in such situations, but also in early stages of dementia (11). The guidelines were issued in 2009 and revised in 2013. It is nonetheless our impression that advance care planning discussions have not yet become an institutionalised part of the Norwegian health services. One reason may be that health personnel are hesitant because they find it uncomfortable or believe it to be stressful for patients. In a study of terminally ill patients, however, only 1.9 % perceived it as highly stressful to discuss end of life treatment (12).
A number of tools have been designed to support patients’ decisions with regard to treatment (13). Murtagh et al. presented a questionnaire that was evaluated positively by treating doctors and patients when it was used systematically for patients with serious diseases (14).
With regard to elderly patients on the medical ward, it is often difficult to select the correct intensity of treatment. An overview of studies conducted on the elderly and frail showed that between 61 % and 91 % wanted discussions about end of life treatment, but very few had been granted these (15). The acutely hospitalised often have an immediately reduced capacity to participate in decision making themselves (16).
Norwegian studies have been conducted on patient involvement in treatment decisions in nursing homes (17, 18) and in the case of acute hospitalisations from nursing homes in the final stage of life (19), but there are no studies on advance care planning discussions with geriatric hospital patients.
We wished to investigate the following: What proportion of geriatric hospital patients have a preserved capacity to participate in discussions on medical decisions pertaining to them? What proportion respond affirmatively to an invitation to take part in this type of discussion? How do they perceive the discussion? What do they respond to questions about information, involvement of next of kin and the decision-making process with regard to current and future treatment?