The purpose of this study was to explore the views and experiences of adult cancer patients about patient participation in care and decision making and the preconditions for this participation. The data were collected by means of focused interviews; in addition the patients completed depression and problem-solving instruments. The sample comprised 34 cancer patients from the haematological and oncological wards of one university hospital in Finland. The results revealed considerable variation in the patients' views on their participation in care and decision making. Some of the patients understood participation either in terms of contributing to the decision making or in terms of expressing their views on treatment options. Some considered that their participation in care was impossible. Patient participation in care and decision making was promoted by good health, access to information, assertiveness, good interactive relationships with nurses and physicians, and encouragement by nurses and physicians to participate. Factors restricting such patient participation were poor health, ignorance, anxiety, age, time pressures of staff, lack of time, high staff turnover and poor interactive relationships. With regard to participation in medical decision making, the patients were divided into three groups: (1) active participants (n = 7), (2) patients giving active consent (n = 9), and (3) patients giving passive consent to medical decisions (n = 18).

The purpose of this study was to find out how cancer patients perceive patient participation in decision-making and to see which factors in their view facilitate and restrict participation. Data were collected in focus group interviews with 25 patients, most of whom had breast cancer. Data interpretation was based on the method of qualitative content analysis. The results showed that patients, nurses and physicians all play a part in terms of how patients participate in decision-making. Patients defined participation in decision-making in terms of asking questions, obtaining/providing information and choosing from/presenting different alternatives. Among the factors that were thought to promote participation in decision-making were the patient's activity, the presence of a primary nurse/physician, the encouragement of nurses and physicians to participate, the treatment of patients as equals, and nurses and physicians having enough time for patients. As for factors hindering participation in decision-making, reference was made to patient ignorance, physical and mental imbalance and shyness on the part of the patient. Obstacles to participating in decision-making that originated in the nurses and physicians were the tendency for them to treat patients as objects, to fall in a routine, problems with information dissemination and lack of time.

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Five palliative home care teams participated in a prospective Swedish study that included 221 palliative cancer patients. All patients with incurable malignant disease that were admitted and died during 1999 were included. On admission, demographic data were recorded. When patients, despite ongoing home care, were referred to institutional care, doctors and nurses involved were interviewed about the reasons for this. After the patients' death next of kin involved in the care were interviewed according to a questionnaire. Approximately half of the patients died at home. The reasons for referral showed a wide diversity and included both social and psychosocial factors, medical emergencies and problems related to symptom control. A preference for dying at home and not living alone were shown to be the strongest predictors of home death (p = 0.001). However, 35% of patients living alone died at home. Interestingly enough, Karnofsky performance index (KPI) at admission was significantly lower for those dying at home, despite similar mean time of care. The understanding of impending death was significantly more common among the families of those patients dying at home.

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