Our findings suggest that bereaved relatives of people who died following stroke were more likely to rate care as ‘excellent’ if they considered that the deceased person and/or their own individual needs were met during the last 3 months and last 3 days of life. This included being actively involved in discussions with doctors and nurses about the condition of the deceased person, being able to discuss their worries and fears, perceiving that the doctors and nurses know enough about their condition and having enough help available to help with personal care needs.
There were a number of limitations to this study. The data used in this paper are now over five years old, reflecting the vagaries of short term research funding which has meant the write up of this study has been completed in the lead authors own time. While the data reflect care provided in 2003 we would argue that our findings are still of relevance. No more recent studies have been published in this area and while the National Stroke Strategy includes quality, markers for End of Life Care to date there are no detailed plans on how these might be achieved. Our conclusions however, reflect the aims of the National End of Life Care Strategy with its emphasis on patient led care. The response rate was less than that achieved in similar surveys (Addington-Hall et al. 1998, 2006b, Addington-Hall & McCarthy 1995). There are also concerns about the use of proxies in evaluating health care, particularly in relation to recall and the impact of bereaved informants’ emotions on their views. The limited available evidence suggests that informants’ views on satisfaction with care and observable symptoms accord reasonably closely with those of patients (McPherson & Addington-Hall 2003). Whilst there is some evidence that bereaved people do change their views during bereavement, these views appear to be based on their knowledge of the patient, and not on their own distress (McPherson & Addington-Hall 2004). With regard especially to care in the last 3 days of life, it is unlikely that patients themselves would have been able to engage in a research interview or complete a questionnaire (Addington-Hall et al. 2007), either because they were too unwell or because they might not have been identified as likely to die; this makes proxy evaluations the only source of information. The three regression models developed give an indication of the main factors which are associated with excellent care, but they may not be the only factors. The models were developed using a relatively small sample and a relatively large number of variables were considered for inclusion in the model. This was highlighted by the fact that a number of questions had to be excluded from regression analyses because of multicollinerarity problems. The choice of variable to exclude is not straightforward and can lead to misjudgements and therefore mis-specification of model parameters. If two variables are highly correlated and each accounts for similar variance in the outcome, then it is not possible to tell which is important and they could be used interchangeably. Information from a larger number of participants would allow the complex relationships between these variables and excellent care to be assessed more thoroughly.
Stroke care at the end of life
These findings support our earlier qualitative work which showed that complaints from bereaved relatives about end of life care reflect instances in which the deceased person or they themselves had not been treated as individuals and in which they had felt ‘devalued’, ‘dehumanized’ or ‘disempowered’ (Rogers et al. 2000). Importantly, instances in which the expected ‘rules’ of patient/doctor communication were breached were also an important cause of dissatisfaction or complaint (Addington-Hall et al. 1995). Sources of dissatisfaction or complaint with end of life care seem to be similar to those with health care in general (Coyle 1999, Williams et al. 1998).
The UK Health Care Commission has recently highlighted the need for open and on-going communication between healthcare staff and patients’ relatives in end of life care (Healthcare Commission 2006, 2007). This review of second stage complaints about the NHS care showed that relatives were often unaware that their loved one was likely to die, were often not told about their relatives’ impending death soon enough to be with the patient at the time of their death, and were particularly distressed if given conflicting or contradictory information. Additionally, the report highlighted the need for relatives to know that their loved ones’ basic care needs were met and, importantly, that their care had been documented. Our findings indicate the importance of these issues for bereaved relatives regarding overall satisfaction with end of life care of those who died following stroke. Our findings are similar to those reported by Addington-Hall et al. (1995), where people who died following stroke did not receive sufficient help or information from healthcare professionals.
Concerns about the standard of care for dying people in the UK have led to a number of government initiatives, including introduction of the Liverpool Care Pathway in the acute hospital environment (Jack et al. 2003). The Pathway aims to promote best practice in the last 3 days of life by requiring healthcare professionals to address the individual medical, nursing, psychosocial and spiritual needs of patients and those close to them. The Pathway encourages open discussion between professionals, patients and relatives, and requires four- hourly assessment of the patient to be documented. The pathway may go some way to ensuring that individual needs are met and that relatives see evidence of this.
Towards the end of life, many people lack the capacity to make major decisions relating to their health care; this is especially true in stroke, which often renders patients unable to communicate meaningfully. The Department for Constitutional Affairs (2007) requires clinicians to consider the opinions of relatives and friends of such patients when making decisions to withhold or withdraw treatment (BMA 2007). However, clinicians are not bound by the opinions of relatives and must act in what they feel are the best interests of the patient. In some instances, these may be at odds with the views of relatives and therefore disagreements about end of life decisions will probably continue to be a source of dissatisfaction. It is too early to assess the impact of advance directives on the provision of end of life care, but they may reduce the number of instances in which clinicians and relatives disagree (DoH 2007d).
To date, there has been little literature concerning the needs of dying patients after stroke and those close to them (Jack et al. 2004, Shah et al. 2005, Stevens et al. 2007). However, we do know that during the last days of lives their care needs are likely to be similar to those of people dying from other conditions (Addington-Hall 2005, Ellershaw 2007, Mirando et al. 2005). Until this time, however, patients after stroke, especially those who remain unconscious for longer than a week, are likely to present particular challenges to those caring for them. Assessing individual needs, responding to patients as individuals and engaging with those close to them may be especially difficult when patients are unable to engage in normal social interactions and about whom nursing staff may have little or no prior knowledge (Rogers & Addington-Hall 2005). Such patients are easily forgotten in busy acute environments, where the focus of specialist stroke care tends to be on rehabilitation and recovery (Coleman Gross et al. 2001, Hilderley et al. 2002, Nir et al. 2004).
As a result of the acute onset of stroke and the need for prompt medical intervention following appropriate assessment, people with stroke are likely to be admitted to hospital. Our data show that 76% of our sample were admitted to hospital in the last 3 months of life. Up to a third of people experiencing a first stroke will have died within a year. The UK End of Life Care Strategy aims to increase the number of people being cared for and dying in the setting they choose, including their own homes (DoH 2008). Therefore, service providers will increasingly need to commission a range of services and service configurations that are flexible enough to meet individual needs and address the objectives set out in this strategy. To support these, The Stroke Association (2008) has recently launched a campaign entitled ‘Lost without Words’, highlighting some of the key points from the National Stroke Strategy (DoH 2007b). Continuing to highlight the need for people with stroke to have access to services and support reinforces the challenges faced by the current delivery of the ‘Our NHS, Our Future: NHS Next Stage Review’ (2008).
Despite concerns about the theoretical robustness of the concept of satisfaction and patient and proxy ratings of health care, such ratings continue to be an important component of user involvement and service evaluation. Having a clear understanding of the ways in which patients and proxies rate care will be essential to service improvement and development.