Tableaux de données probantes et liste de référence
Palliative care is a comprehensive approach to end of life care that aims to control pain, provide comfort, improve quality of life, and effectively manage patients’ and their families’ psychosocial needs. It is an important component of stroke care given that a high proportion of patients will die during their initial hospitalization. The palliative care needs of 191 acute stroke patients were evaluated using the Sheffield Profile for Assessment and Referral to Care (SPARC), a screening tool developed to be used in advanced illness, regardless of diagnosis. SPARC included domains related to physical, psychological, religious and spiritual, independence and activity, family and social issues (Burton et al. 2011). Patient dependence, defined as a Barthel Index score of <15 and increasing age were found to be independent predictors of palliative care need.
Holloway et al. (2010) compared the reasons for palliative consults for patients following stroke to conditions including cancer, congestive heart failure, chronic obstructive pulmonary disease, and dementia. Of the total stroke admissions during the 3-year study period, 101 (6.5%) were referred for a palliative care consult. Patients with stroke had the lowest (worst) mean Palliative Performance Scale scores compared with all other conditions. Compared to patients with other conditions, stroke patients who received a palliative care consult were more often referred for end-of-life issues and more likely to die in hospital. Patients who had suffered a stroke were more likely to be unconscious during the assessment and more frequently lacked the capacity to make or participate in their own medical care decisions. When compared by stroke sub type, patients who had suffered an ischemic stroke were the least likely to be referred for palliative care (3.2%) while those with a subarachnoid hemorrhage were referred most often (15.0%). Eriksson et al. (2016) used data from 1,626 patients included in a national quality register for end-of-life care that had died of stroke in a hospital or nursing home, and compared care during the last week of life with 1,626 patients in the same register who died of cancer, matched for place of death, age and sex. The odds of experiencing dyspnea, anxiety and severe pain were significantly lower for patients with stroke; however, family members of stroke patients were less likely to be offered bereavement follow-up. Patients were also less likely to be informed about transition to end-of-life care.
Palliative care pathways have been developed to ensure that in the last days of their lives patients receive the most appropriate care possible. However, there is an absence of high-quality evidence to suggest that they are effective. In a Cochrane Review, Chan et al. (2016) sought studies that examined the use of an end-of-life care pathway compared with usual care for the dying. A single cluster RCT was identified (n=16 hospital wards), comparing an Italian version of the Liverpool Care Pathway (LCP-I), a continuous quality improvement programme of end-of-life care vs. usual care. In this trial, 232 family members of 308 patients who died from cancer were interviewed. Outcomes were assessed during face-to-face interviews of family members 2–4 months after the patient’s death. Only 34% of the participants were cared for in accordance with the care pathway as planned. The odds of adequate pain control and control of nausea or vomiting were not significantly higher in the LCP-I group.
Several studies have examined the characteristics of patients who are transferred to palliative care units. San Luis et al. (2013) included data retrieved from chart review of 236 patients admitted to hospital with a confirmed diagnosis of stroke. 97 patients were transitioned to palliative care. These patients were more likely to be older, have atrial fibrillation, have more severe dysphagia on the first swallowing evaluation, left MCA stroke, higher initial stroke severity, received tPA, and admitted on a weekday. Gott et al. (2013) reported that the diagnosis of stroke was a strong predictor of transfer to palliative care among a mixed diagnosis group of 514 patients with palliative care needs (OR=8.0, 95% CI 2.5-25.9, p=0.001).
Decisions to withhold or withdraw life-prolonging treatments after stroke affect a substantial proportion of patients who have experienced a severe stroke. Alonso et al. (2016) reviewed the charts of 117 patients with ischemic or hemorrhagic, who died during hospitalization, to identify those with do-not-resuscitate-orders (DNRO), and therapy goal modifications with transition to symptom control. Factors that contributed to the decision to limit life-sustaining therapies were sought. A DNRO was made in 101 (86.3%) patients, usually within 48 hours of admission. 40 patients were transferred to palliative care after a mean of 5 days. 38 patients were not able to communicate at the time of decision making. Following transfer, monitoring of vital parameters (95%) and diagnostic procedures (90%) were discontinued. Antibiotic therapy (86%), nutrition (98%) and oral medication (88%) were never ordered or withdrawn. Low-dose heparin was withdrawn in 23% cases. All patients were maintained on intravenous fluids until death. Disturbance of consciousness at presentation, dysphagia on day 1 and large supratentorial strokes were independent predictors of decisions to withdrawing/ withholding further treatment. Patients died an average of 2.6 days following therapy restrictions.