Rurik Löfmark

In this study we investigated (a) to what extent physicians have experience with performing a range of end-of-life decisions (ELDs), (b) if they have no experience with performing an ELD, would they be willing to do so under certain conditions and (c) which background characteristics are associated with having experience with/or being willing to make such ELDs.

The aim of this paper is to present and discuss nurses’ and physicians’ comments in a questionnaire relating to patients’ transition from curative treatment to palliative care. The four-page questionnaire relating to experiences of and attitudes towards communication, decision-making, documentation and responsibility of nurses and physicians and towards the competence of patients was developed and sent to a random sample of 1672 nurses and physicians of 10 specialties. The response rate was 52% (n = 844), and over one-third made comments. The respondents differed in their comments about three areas: the concept of palliative care, experiences of unclear decision-making and difficulties in acceptance of the patient’s situation. The responses are analysed in terms of four ethical theories: virtue ethics, deontology, consequentialism and casuistry. Many virtues considered to be appropriate for healthcare personnel to possess were invoked. Compassion, honesty, justice and prudence are especially important. However, principles of medical ethics, such as the deontological principle of respect for self-determination and the consequence of avoidance of harm, are also implied. Casuistry may be particularly helpful in analysing certain areas of difficulty—namely, what is meant by “palliative care”, decision-making and accepting the patient’s situation. Keeping a patient in a state of uncertainty often causes more suffering than necessary. Communication among the staff and with patients must be explicit. Many of the staff have not had adequate training in communicating with patients who are at the end of their life. Time for joint reflection has to be regained, and training in decision-making is essential. In our opinion, palliative care in Sweden is in need of improvement.

In the transition from curative treatment to palliative care of a general end-of-life patient population, the internal communication of the acute care staff seems to be less than optimal. The communication had reference to the dialogue within the staff both before and after the decision to concentrate on palliative care, and possible transfer of the patient. This survey of Swedish nurses and physicians showed that most of 780 respondents wanted more internal communication, and a more individualized procedure of decision-making. All staff should be informed about the decision made but full agreement was not seen as realistic. The largest difference of opinion between nurses and physicians concerned the involvement of nurses in the decision-making about the transition. A uniform documentation of the decision to transfer care focus was the ideal. Approximately every fourth patient in acute care is transferred to receive palliative care. Only approximately half of the respondents had any training in palliative care and the majority wanted more training. There seems to be a need for more palliative care training, perhaps somewhat different for each speciality. Furthermore, a common language to enable nurses and physicians to communicate more easily may improve the transition process.

The principle of autonomy brings questions about the dialogue between physicians and their patients in focus. The controversial issue is not if, but when and how to inform patients about their diagnosis, prognosis and treatment options. In difficult situations the main problem is to find a reasonable balance between respect for self-determination and the obligation of beneficence, i.e. the professional responsibility based on assessments of the patient's best interest. One important tool for dealing with this balance in everyday practice is the art of communication with the patient.