Forgoing life-prolonging treatment in Sweden:: Attitudes, practices and methodological issues

The international discussion on forgoing potentially life-prolonging treatment is extensive. The Swedish contribution to this discussion is modest. However, when the focus is on withholding and withdrawing life-prolonging treatment in Sweden, the contribution is more significant. The purpose of this chapter is to give an overview of Swedish research in this field, and to identify and discuss some issues for further research. Disagreeing with professional guidelines, a majority of health care professionals are of the opinion that there is an ethically relevant distinction between withholding and withdrawing life-support. Swedish health care professionals believe that they should inform patients about their do-not-resuscitate decisions. These attitudes are in harmony with national recommendations. However, less than half of competent patients are actually informed. The general public, compared to intensive care physicians, want more patient and family influence on decisions to withdraw life support. The Swedish Priority Commission categorically prohibits the use of chronological age as a criterion for denial of medical care, but many professionals consider such denial acceptable. Thus, a great deal is known about attitudes and practices in Sweden. In the opinion of the authors, the main methodological problems are related to the justification of practical conclusions. We argue that value premises (that is, conceptions of what is right or wrong), in combination with results from surveys on attitudes, experience and behaviour, are required to justify such conclusions. With reference to end-of-life situations, an important task is therefore to identify value premises by means of various different methods and to discuss these value premises openly in medical decision making, research and societal debate.