This paper provides the first theoretical explanation of how palliative care and acute stroke care can be integrated around the needs and preferences of patients and families. The catastrophic impacts of stroke are well documented in the literature. The major emphasis of acute stroke care is on ensuring neurological recovery or stability, preventing complications and commencing early rehabilitation . However patients and families also require access to palliative interventions that ameliorate negative disease sequelae, and support them at the end of life. The evidence base for the effectiveness of supportive strategies to address these issues in stroke is diffuse, and lacking in any theoretical integrity . For example, relevant literatures will include, amongst other things, psychological care and emotional support, communication and information giving, carer and family support. With the emphasis of palliative care shifting from terminal, end of life care to supporting quality of life for patients with life-threatening illness such as stroke, palliative care may provide a new theoretical focus for enhancing practice in this area. This does not imply that palliative care is theoretically secure, as debate continues as to the natures of supportive, palliative and end of life care. However, quality of life in the face of life threatening illness may provide a mid-range theoretical focus around which different theory areas may be synthesised.
This paper highlights some contextual challenges associated with the integration of palliative and acute stroke care, although the clinical capacity to support patients and families through disease onset and progression is clearly evident. Improvements in the effectiveness of acute stroke care rightly focus the minds of clinical staff on neurological care and rehabilitation. For many, palliative care was primarily associated with the final stages of dying, and failure on the part of the clinical team. This may limit the potential for new insights to emerge from the synthesis of palliative care and other treatment modalities. A shift in thinking is required which acknowledges the potential benefits of earlier integration of palliative care for patients who have not reached the end of life.
Previous literature reviews examining the interface between palliative and stroke care have highlighted that few interventions are defined as ‘palliative’. National Clinical Guidelines for Stroke  reinforce the importance of access to expertise and the availability of skills, rather than the provision of specific interventions. An earlier review of the literature highlighted only one intervention study, a limited evaluation of the Liverpool Care Pathway , which suggested that the use of a protocol for end of life care improved some aspects of clinical care. Improvement in communicating poor prognosis to family members was more resistant to change. However, no information about interventions that may be applied earlier in the disease trajectory is available.
Data from one of the studies included in this paper provides detailed information about the range and intensity of patient-reported concerns within the acute stroke phase. The degree to which these concerns equate to problems that are the responsibility of statutory health services will be subject to debate. Our data indicate the significant concerns that patients and families may have for the future, including death and dying. Analysis of complaints sent to the Healthcare Commission for independent review between July 2004 and July 2006, showed that more than half (54%) of complaints about hospitals were about care surrounding a death. Specifically, “in many cases, families have received contradictory or confusing information from the different staff caring for their relative. Or, when they have compared the information they have received following a death, they have found discrepancies in what they have been told” [6 p17]. Policy and guidance highlight the importance of information provision, communication and decision-making within a multi-disciplinary context, and in partnership with patients and family to determine care preferences [7, 28]. However implementation is inconsistent, particularly for patients whose recovery is uncertain . Recognition of a stroke patient’s ‘dying’ status may be ambiguous , potentially resulting in over or under treatment and delaying initiation of general palliative care or referral to specialist palliative care. Older people generally may be disadvantaged in access to appropriate and acceptable services that meet their preferences and those of their family carers, who may also be older people . There are problems in recognizing the process of dying and assigning an entry point to “end-of-life” is always going to be somewhat arbitrary . Hypothesized models of typical dying trajectories linked to cancer, organ failure, frailty have not always been supported by empirical data [32, 33], and the range of dying trajectories within acute stroke is unknown.
Inevitably, acute stroke onset presents a significant threat to patients and families, and these impacts are well documented in the literature. Whilst our data are confirmatory, they do provide some additional insights into how clinical care can be provided in a way that does not add further to distress. Notwithstanding the difficulties in accurately prognosticating outcome, although the majority of patients survive acute stroke, patients and their families have concerns about death and dying that do not appear to be related to prognosis. Opportunities to discuss and help make sense of these concerns are important to patients and families, and our data do not indicate that any lack of prognostic uncertainty should prevent these discussions from taking place. Honesty and excellent communication and inter-personal skills would appear to be central to the development of therapeutic relationships between patients, families and staff. Whilst it may not be possible for many concerns to be resolved by intervention, greater awareness and insights of patient and family concerns may mean that health care systems do not compound an already stressful situation. Practical steps identified by patients such as understanding how family networks operate around the patient, agreeing arrangements for communication, and helping patients and families make sense of their experience through, for example, keeping diaries, may all help in minimising the risks of additional negative experiences.
Our data demonstrate that the relationship between stroke and specialist palliative care tends to be reactive, confirming clinical decisions about palliation that have already been made by stroke clinicians. This may reflect the lack of evidence for specialist palliative care interventions for people affected by stroke, the increasing acuity of patients within acute stroke services, and the more general demand on specialist palliative care resources. Partnership working needs to shift from reactive support for clinical decisions, to more strategic collaboration that enhances the evidence base and care quality. New models of partnership working are required at both clinical and organisational levels, and importantly through collaborative research endeavour.
As a synthesis, the findings of this analysis may reflect limitations embedded in contributing data sources. These included survey and interview data obtained from one stroke service, and although some aspects of organisational context may have been specific, national audit data indicate that clinical practice was representative of that across the UK. Synthesis across studies also requires consideration of how contextual influences and matters of interpretation are addressed . In this synthesis, data collection in the different studies was broadly underpinned by current frameworks for palliative care , which provided a consistent reference for interpretation. However we also attempted to synthesise alternative stakeholder views on palliative care within a stroke context. ‘Realist’ work requires a strong stakeholder focus to ensure that emerging theory addresses important issues, and produces useful findings . However, little guidance is available to suggest how different perspectives should be managed within the process. As we aimed to produce a guiding framework for clinicians and service managers to sustain the integration of palliative care within stroke services, we ‘focused’ our synthesis through the perspectives of staff drawn from three stroke services. Whilst this should maximise the utility of our findings, we may have under-represented some issues which are important to other stakeholders, including patients and family members.