END-OF-LIFE DECISIONS IN THE HOSPITAL; WHAT DO PATIENTS PREFER?

Purpose: In the Netherlands one third of all deaths (n=35,000 per year) occurs in a hospital. Complex medical decisions are often needed for patients admitted to the acute hospital for whom cure or recovery can not be obtained anymore. In this study we investigated preferences on end of life care of patients who died in the hospital. 

Method: All general wards (17) and a specialised unit for acute palliative care in a Dutch university hospital participated in this study. Relatives of adult patients who died on one of these wards were asked to complete a questionnaire 3 months after the patient’s death. We analyzed questionnaires received between September 2009 and February 2011 about 195 patients.

Result: The median age of the deceased patients was 67 years, 56% were male and 49% had cancer. The median length of the last hospitalization was 11 days. In the last month of life 49% of the patients had not discussed any preferences on end-of-life care. The other 100 patients had discussed their preferences, mostly with their spouse (33%) or children (29%). According to relatives a minority had discussed end-of-life preferences with their medical specialist (23%) or general practitioner (17%). Most common preferences were no life-prolonging treatments, such as resuscitation or surgery (32%), or a wish for euthanasia (13%). 22% of the patients preferred intensive symptom treatment to prevent suffering, e.g. intensive pain treatment or continuous palliative sedation therapy. On the contrary, 13% preferred all possible treatments to prolong life, like organ transplantation or chemotherapy. Others (11%) mentioned non-medical preferences, e.g. no admittance to a nursing home or the appointment of a surrogate decision maker. 38% of the patients had undertaken activities to complete their lives, e.g. traveling, or to prepare for death, e.g. by selecting music for their funeral. Although only 29% of patients had discussed their preferred place of death, 70% of the relatives thought the patient wanted to die at home. However, 85% of the relatives were satisfied with the hospital as place of death.

Conclusion: Half of the patients discussed preferences on end-of-life care with others, but only a small minority had informed their physician about their preferences. Shared decision making at the end-of-life is the responsibility of patients and physicians and there certainly seem to be opportunities for improvement.