11% of acute stroke patients die in hospital during acute care (Stroke Foundation 2015 [26]) and approximately 20% die as a result of the stroke in the first 30 days (Thrift et al. 2000 [36]).
Practical end-of-life issues, such as the use of a medical power of attorney and advance care directives, should be discussed. Organ donation may be sensitively raised if appropriate. Issues of bereavement may become part of the responsibility of the stroke team.
Benefits outweigh harms for almost everyone. All or nearly all informed patients would likely want this option. Learn more
Stroke patients and their families/carers should have access to specialist palliative care teams as needed and receive care consistent with the principles and philosophies of palliative care. (Gade et al. 2008 [28])
Interdisciplinary palliative care probably increases completion of advance directives
Interdisciplinary palliative care probably decreases ICU admissions
Interdisciplinary palliative care probably improves patient satisfaction with the care environment slightly
Interdisciplinary palliative care probably improves patient satisfaction regarding communication with providers slightly
Interdisciplinary palliative care probably increases hospice length of stay
Gade et al. (2008) [28] demonstrated that multidisciplinary palliative care teams reduced hospital admissions and increased decision-making (number of advanced care directives). They also improved communication and patient satisfaction slightly. A number of studies (both qualitative and quantitative) reported that the management of physical symptoms and psychological distress when the outcome of stroke is likely to lead to major disability/death is appropriate and needed. It was also reported that there is a need to not focus exclusively on end-of-life care but also to support quality of life for patients who have had a stroke and are likely to have a poor outcome and/or die in the acute phase of care.
Gade et al. (2008) [28] (N=512) showed that interdisciplinary palliative care could improve advanced directives (number needed to treat to benefit 7.5), decrease ICU admissions, improve patient satisfaction and communication with providers, and increase length of hospice stay. No harms were reported.
The evidence is considered moderate due to confidence intervals not being reported, which made the range of possible benefit hard to determine.
The qualitative studies by Payne et al. (2010) [31]; Burton and Payne (2012) [30] and de Boer et al. (2015) [32] discuss the need for palliative care services not to focus exclusively on end-of-life care but also to support quality of life for patients who have had a stroke and are likely to have a poor outcome and/or die in the acute phase of care.
The studies suggested that the significant advances made to implement evidence of rapid neurological assessment, specialist management and organised stroke services will mean that there will an increasing need for patients to have access to specialist palliative care services when needed and for all staff to be appropriately trained in palliative/supportive care.
Although these studies were undertaken mainly in the UK they would have direct applicability to the stroke unit care model in Australia and the needs of patients and their families/carers in relation to palliative care.
Whilst the evidence of patient’s views on palliative care is understandably limited it is clear that from a patient’s perspective the management of physical symptoms and psychological distress when the outcome of their stroke is likely to lead to major disability/death is appropriate and needed.
Blacquiere et al. (2013) [33], a Canadian study, quantified the satisfaction with palliative care of families of patients who had died from stroke. Overall their satisfaction was high (9.04 out of 10) with most satisfaction about decision-making but least about emotional needs being met. There was less satisfaction about the control of individual symptoms and provision of adequate information. The most contentious area was the cessation of artificial hydration and feeding.
Although none of the studies directly assess whether families wanted palliative care for the patient following a stroke there is support for the provision of this care when needed. These limited studies identified an expressed desire from families for the patient to be pain-free and not suffering emotional distress. It is also clear that the satisfaction ratings support the view that the families valued the palliative care they received although they thought it could be improved.
It is not likely that the values and preferences in the Australian context would differ significantly.
Gade et al. (2008) [28] reported significantly lower total health costs for patients randomised to inpatient palliative care services compared to usual care. Mean total costs were US$14,486 in the palliative care group and US$21,252 in the usual care group (cost reference year 2002/2003), with the difference driven by lower hospital readmission costs (US$6,421 per patient for the palliative care group and US$13,275 for usual care). Patients in the palliative care group also had significantly fewer intensive care unit stays when readmitted. However, only a small subset of patients in this study were hospitalised for stroke (6%).
There is an organisational indicator collected in the National Stroke Audit on whether participating services have access to palliative care services for patients with stroke. There are also clinical indicators collected on the total number of patients with stroke who underwent palliative care and the median time between a patient's admission to hospital and the decision to palliate.
For patients with severe stroke who are deteriorating, a considered assessment of prognosis or imminent death should be made.
A pathway for stroke palliative care can be used to support stroke patients and their families/carers and improve care for people dying after stroke.
Mortality after stroke is not insignificant. A previous systematic review (7 trials) showed that carers of stroke patients have different needs to those involved in specialist palliative care in cancer. They require more support, particularly as they are likely to be older and in poor health, and caring for their family members in difficult circumstances, often unsupported (Stevens et al. 2007 [34]).
An observational study was identified that developed and implemented a care pathway for palliative care in acute stroke. The study reported improved processes of care based on national standards, compared to care provided prior to the pathway (Jack et al. 2004 [35]).
IPCS patients reported greater satisfaction with their care experience and providers' communication, had fewer ICU admissions on readmission, and lower total health care costs following hospital discharge.
https://www.liebertpub.com/doi/10.1089/jpm.2007.0055
Our framework is the first, empirical explanation of the integration of palliative and acute stroke care. The specification in the framework of factors that mediate integration can inform service development to improve the outcomes and experiences of patients and families.
https://bmcpalliatcare.biomedcentral.com/articles/10.1186/1472-684X-11-22
Our findings demonstrate the importance of improving communication between patient, family and health professionals for seriously ill patients with stroke in UK hospitals.
https://journals.sagepub.com/doi/10.1177/0269216309350252
A better understanding of the latent world of experiences of relatives that influence the decision-making process may help physicians and other health-care providers to better involve relatives in decision-making and enhance the care, including palliative care, for patients with severe stroke in line with their values and preferences. Communication between physician and relatives seems vital in this process.
https://journals.sagepub.com/doi/10.1177/0269216314563427
Families of patients receiving palliative care at our institution showed generally high satisfaction with palliation after stroke; specific domains were identified for improvement. Further study in larger populations is required.
https://www.ncbi.nlm.nih.gov/pubmed/23821226
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Swallow screen
Modification of diet or institution of NG feeding as appropriate within 48 hours
Hydration Status: Maintain euvolemia.
Assessment of continence
Evaluation of pressure risk
Early mobilisation where appropriate
Occupational therapy and seating assessment
Multidisciplinary assessment and discussion
Assessment of mood
Information meeting with relatives and patient
Source:
https://www.hse.ie/eng/services/publications/clinical-strategy-and-programmes/stroke-unit-management-care-bundle.pdfIKA SYAMSUL HUDA MZ