Table 4.
End of life care
| Authors | No. of carers | Population involved in the study | Carer definition | Demographic details (1) mean age (years) (2) female (%) (3) spouses (%) (4) in employment (%) (5) mean patient dialysis duration (years) (6) mean length of caring (years) (7) mean post-dialysis survival time (days) | Country of origin | Study design | Main study aims for carers | Main findings |
|---|---|---|---|---|---|---|---|---|
| Ashby et al. [14] | 5 | Family members, patients and health professionals | Not defined | (3) 100 (1), (2), (4), (5), (6), (7) not reported | Australia | Qualitative, cross-sectional | Reasons on decisions to stop dialysis | Family members did not feel adequately educated or equipped by hospital to prepare for lifestyle associated with dialysis regimen. |
| Cohen et al. [58] | 86 | HD carers | Not defined | (3) 49 (1), (2), (4), (5), (6), (7) not reported | USA | Quantitative, cross-sectional | To explore the perceptions of bereaved family members about patients’ terminal symptoms and the quality of their end of life care | Family members perceived that most patients were in pain in last week of life. Fatigue was reported as second most disturbing symptom Death at home was associated with less pain, more peace and completion of a living will. Those who completed a health care proxy felt it had helped them ensure that patients’ wishes were followed. |
| Miura et al. [59] | 398 | Family members, patients and health professionals | Not defined | Not reported | Japan | Quantitative, cross-sectional | To assess how accurately family members predict patients’ wishes about medical care and treatment under various medical scenarios | Family members were poor at assessing both patients’ current and future preferences for cardiopulmonary resuscitation or dialysis continuation. |
| Perry et al. [60] | 46 | Carers | Not defined | (1) 53 (2) 63 (5) 5.4 (3), (4), (6), (7) not reported | Canada | Quantitative, cross-sectional | To describe the opinions of their family members/friends regarding advance directives | Relatives/friends felt that routine visit to the health professional was the best time to discuss advance directives, though over half felt that the final decisions about major treatments should be left to physicians. |
| Phillips et al. [45] | 26 | Family members | Not defined | (1) 47 (3) 27 (5) 3 (7) 8 (2), (4), (6) not reported | USA | Quantitative, cross-sectional | To explore the long-term impact on families of deaths preceded by cessation of dialysis | Most family members showed little long-term psychological distress, though principal carers and spouses had significantly higher intrusive thoughts. Good death was perceived as being pain free, with the patient being mentally alert, able to remain at home and dying while asleep. Many felt that health professionals had not provided sufficient information. |
HD = haemodialysis.