Following bereavement, poor health is more likely in carers who perceived that their support from health services was insufficient or whose family member did not die in the carer's preferred place of death
- Correspondence to Sheila Payne
International Observatory on End of Life Care, Lancaster University, Lancaster LA1 4YT, UK;
Family carers are central to the provision of palliative care for patients. It is widely recognised that they are essential to enabling patients to have a choice of place of care, especially to die at home.1 Within Europe there are estimated to be 100 million carers, whose contribution to care often exceeds the financial expenditures of their countries on formal nursing services although it is difficult to estimate exactly how many are engaged in caring for a person near the end of life.2 In the United Kingdom, Help the Hospices estimates that at any one time approximately half a million family members are providing care to a dying person.3 There is increasing evidence that they are often unprepared for the many demands they face resulting in considerable physical, psychological, social and financial challenges.4 Previous research tends to be based on small studies of family carers of patients already receiving palliative care, which raises concerns about their representativeness. Most authors make the assumption that provision of palliative care services helps to ameliorate the sense of burden and distress, and ultimately are associated with better outcomes in bereavement.
However, undertaking research on family carers is beset with formidable ethical, methodological and practical challenges.5 This paper has a number of methodological advantages as the authors undertook a cross-sectional telephone interview survey with a relatively large sample of 1071 bereaved carers in Western Australia. They capitalised on the availability of linked hospital and community palliative care datasets which enabled the quantification of hospital admissions and community palliative care provided to the deceased. This enabled analyses to identity which subgroups of carers reported greater or less coping, preferences for place of death and actual place of death.
What makes a good study?
There is already good evidence demonstrating the ‘needs’ of family carers.6 There is qualitative research that examines the lived experiences of family carers, helping to illuminate challenges and the competing demands and rewards of caring within the home for a family member.4 But almost invariably these types of studies rely on the recall of relatively few carers which raises concerns about bias. The strength of this study is that it uses administrative data on service utilisation combined with a large sample. It has some limitations, in that participants were in the early period of bereavement, and it is possible that their memories may be shaped by selective recall or grief. For example, correlations between family carers' preferred places of death and actual place of death show that those who died in non-preferred environments were less able to cope in bereavement. It is difficult to know how stable preferences for place of care remain during the dying trajectory and whether shortcoming in actual place of death, even if initially the preferred place, influenced later recollections. Ideally, such a study should collect longitudinal data, over a number of time points, before and after the death.
Pushing forward support for family carers
There are a number of important implications for nursing practice that arise from this study, perhaps the most important being that overall, family carers are undemanding or perhaps have low expectations of support from services in Australia. This means that you cannot rely upon carers to voice their concerns or needs, as generally they will prioritise the needs of the ill person above their own, as previously acknowledged.5 Secondly, in this sample, community palliative care services did not influence carer outcomes in bereavement which challenges the assumptions of many palliative care providers. As advanced care planning becomes more commonly offered to patients, preferred place of care should also be elicited from carers.
Conflicting interests McNamara B and Rosenwax L undertook a period of sabbatical leave based in the International Observatory on End of Life Care, Lancaster University during autumn 2008 but SP was not involved in any joint research with them.