Text Size:    +   -

Palliative and End of Life Care

2018 UPDATE
June 2018

Definitions:

Palliative care is an approach that focuses on comfort and quality of life for those affected by life-limiting illness, such as large hemispheric strokes, and severe hemorrhagic stroke. It aims to prevent and relieve physical, social, psychological, or spiritual suffering of stroke patients, their families and informal caregivers. Palliative care can complement life-prolonging or disease-modifying therapies post-stroke and need not be reserved for those whose death is imminent.

A palliative approach to care refers to palliative care that is provided by non-palliative care specialists i.e. the basic symptom management and basic psychosocial care that all clinicians provide to patients and their families.

End-of-life care is part of the palliative approach and is the management and treatment of dying patients, as well as their families and informal caregivers. The end-of-life period often involves a period of change (e.g. worsening functional status) rather than an acute event.

Goals of Care for Palliative Care: In the event of a potentially poor prognosis, the medical team may initiate a ‘goals of care‘ discussion with the individual and/or their substitute decision maker. This conversation would have the objective of establishing consensus on a direction of care and would incorporate the individual’s previous wishes/advanced care planning as well as their current status and needs. Some potential topics of discussion may be: preferred location of palliation, the cessation of certain medical interventions, comfort care options and preferences in the event of immanent death (e.g. resuscitation). The intent is to then have a written communication for the healthcare team to assist in the provision of individualized palliative care in a timely manner. Health status can change over time and this written plan should be reviewed in conjunction with shifts in status or changes in the care team.   The goals of care can be amended or revised at any time by the individual and/or substitute decision maker.

11.0 Palliative and End-of-Life Care

A palliative care approach should be applied when there has been a catastrophic stroke or a stroke in the setting of significant pre-existing comorbidity, to optimize care for these patients, their families, and informal caregivers [Evidence Level B].

  1. The interdisciplinary stroke team should have discussions with the patient and decision-makers regarding the patient’s current state and likely progression of the effects of the stroke, and come to agreement on the general direction of care – whether care will focus on comfort or focus on life prolongation and functional improvement [Evidence Level B].
  2. Based on decisions regarding the direction of care (i), the interdisciplinary stroke team should communicate with patients, decision-makers, families, and informal caregivers on an ongoing basis, and provide information and counseling regarding diagnosis, prognosis and what can be expected regarding progression of stroke impact, and management, based on direction of care (see recommendation i) [Evidence Level C].
  3. Content to be discussed with patients, families, and informal caregivers may include:
    1. the appropriateness of life-sustaining measures including mechanical ventilation, enteral/intravenous feeding, and intravenous fluids [Evidence Level B];
    2. reassessment of all medications, and recommendations for cessation of medications no longer necessary when the goals of care shift to comfort measures only (e.g., antiplatelets, anticoagulants, statins, hypoglycemics) [Evidence Level C];
    3. cessation of routine vital sign checks, bloodwork and diagnostic tests [Evidence Level C];
    4. oral care [Evidence Level C];
    5. assessment and management of pain [Evidence Level B];
    6. assessment and management of delirium [Evidence Level C];
    7. assessment and management of respiratory distress and secretions [Evidence Level B];
    8. assessment and management of incontinence, nausea, vomiting, constipation, and skin and wound care [Evidence Level C].
    9. assessment and management of seizures [Evidence Level C];
    10. assessment and management of anxiety and depression [Evidence Level C]. Refer to Canadian Stroke Best Practice Recommendations Mood, Cognition and Fatigue Module section 1 for additional information [Evidence Level C];
    11. Preferred location of palliative care (e.g. Home, Hospice another supportive living environment) [Evidence Level C];
    12. Preferred person to be notified upon time of death [Evidence Level C].
  4. The interdisciplinary stroke team should have the appropriate communication skills and knowledge to address the physical, spiritual, cultural, psychological, and social needs of patients, families and informal caregivers who are receiving end-of-life care. There should be regular communication with the patient, family and informal caregivers to ensure that these needs are being met [Evidence Level C].
  5. Advance care planning discussions should be documented and reassessed regularly with the active care team and substitute decision-maker [Evidence Level C].
  6. Patients, families, informal caregivers, and the health care team should have access to palliative care specialists, particularly for consultation regarding patients with difficult-to-control symptoms, complex or conflicted end-of-life decision making, or complex psycho-social family issues [Evidence Level C].
  7. Formalized palliative care processes and a team experienced in providing end-of-life care for stroke patients (especially nursing staff) should be considered to introduce and monitor standards of care provided to patients at the end of life [Evidence Level B].
  8. Organ donation should be discussed with families and caregivers as appropriate [Evidence Level C].
  9. Supportive counselling, funeral supports and bereavement resources should also be provided to families and caregivers, post patient death [Evidence Level C].

The final, definitive version of this paper has been published in International Journal of Stroke by SAGE Publications Ltd. Copyright © 2018 World Stroke Organization.
http://journals.sagepub.com/doi/full/10.1177/1747493018786616

Rationale

Implementing stroke best practices can contribute to reductions in morbidity and mortality; however, stroke remains the third leading cause of death in Canada. Mortality rates in patients with hemorrhagic stroke are significantly higher than ischemic stroke in the hyperacute and acute phases of care, and both groups require expertise and clear information. There is evidence describing the unmet needs in stroke patients who are at the end of life. Recognizing and addressing the needs of the person with a life-limiting stroke or who is close to death after a stroke can enhance the quality of the time left and the satisfaction of the patient, family, caregivers, and the health care team.

System Implications
  1. Established referral process to specialist palliative care services, either within the same organization or through telehealth technology in rural and remote locations.
  2. Established referral process to spiritual care services.
  3. Communication training for physicians, nurses, and allied health professionals that addresses supporting patients with poor prognoses and their families.
  4. Protocols for advance care planning to elicit patient and family goals for care preferences, and ensure these are documented and communicated to decision makers and health care team members.
  5. Palliative care protocols that are integrated into ongoing care delivery.
  6. Information on palliative care and linkages to local stroke support organizations and their services should be available for staff to share with patients and families.
Performance Measures
  1. Percentage of stroke patients who had a referral to specialist palliative care services during inpatient care.
  2. Percentage of dying patients who were placed on an end-of-life care protocol.
  3. Percentage of stroke patients who die in the location specified in their palliative care plan.
  4. Family and caregiver ratings on the palliative care experience following the death in hospital of a patient with stroke.

Measurement Notes

  1. Documentation for palliative and end-of-life measures may appear in consult notes, nursing notes, or physician notes. Just the presence of an order for palliative consultation should not be accepted as adequate documentation.
  2. Data quality may be an issue with some of these performance measures. Improved documentation should be promoted among health care professionals.
  3. Patient and family experience surveys should be in place to monitor care quality with end-of life situations.
Implementation Resources and Knowledge Transfer Tools

Health Care Provider Information

Patient Information

Summary of the Evidence

Evidence Table and Reference List

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.