Consulting bereaved relatives of stroke patients
From Mahatma Gandhi to Pope John Paul II, writers have commented that society can be judged by the way it treats its most vulnerable, and surely this includes those who are dying. Working as a clinical nurse, I was frustrated by the difficulties of organizing what I felt was appropriate palliative care for those with non-cancer diagnoses. Cardiovascular disease is the biggest of such groups, with stroke a major cause of mortality, nearly 10% of all deaths (Claiborne Johnston et al. 2009).
Recent radical changes in stroke care mean damaged brain may now be salvaged and there is a major focus on prompt transfer to specialist care and, where appropriate, aggressive treatment. Care of stroke survivors is obviously paramount, but ensuring a ‘good death’ for the many who do not survive is also crucial. A first step towards this is to understand current practice. However, research of this sort presents challenges. As Young et al. (2009) point out in their paper in this issue of JAN (pp. 2161–2174) it is seldom appropriate or possible to involve dying patients, and recruitment of bereaved relatives is also sensitive. A postal survey allowed those contacted to decline participation without effort, and achieved a 37% response rate. In this study, Young et al. report one component of their 2003 survey, that of experiences with health and social care in the last 3 months and 3 days of life of the 165 relatives (91%) of those that died from stroke in an institution. These were a distinct subgroup of stroke patients. This, response rate, survey date, and other limitations acknowledged by the authors, suggest caution in wider application of findings.
Nonetheless, for me, some of the findings jump out. For example, 24% did not feel their family member died in the right place; 39% did not feel they had enough privacy when told of the likely outcome; whilst 67% knew their family member was likely to die shortly, only 33% were present when this happened; 70% perceived that care was less than excellent in the last 3 days. Since this survey was conducted (2003), the United Kingdom has undertaken major initiatives and things may have changed, but these findings flag the scope at that time for major improvement.
Further, multicollinearity analysis revealed connections between elements of care: whether there were enough nurses on duty to care for the deceased person; whether nurses knew enough about the condition of the deceased person; whether they treated the deceased person with respect and dignity; whether informants were involved in decisions about the treatment and care of the deceased person. The authors note this may reflect sample size and number of variables. However, it also may be that adequate staffing is fundamental, and features such as skilful application of expert knowledge, sensitive and timely communication, consultation and engagement of relatives flow from this. Further, links between the staffing context and relatives’ experiences were demonstrated. High satisfaction with care during the last days was predicted by whether informants reported there was enough help available to meet the personal care needs of the deceased person all of the time; whether they were involved as much as they wanted in decisions about the deceased person; whether they felt that the deceased person died in the right place. Staffing resource availability as well as staff knowledge, skills and attitudes defined patients’ and relatives’ experiences.
With service user satisfaction now regarded as a key service outcome, this study uncovers experiences of a little-consulted and hard to reach group. Messages for clinical leaders and managers are neither simple nor easy: the quantity as well as quality of nursing care is key to service user satisfaction and outcomes.