Palliative care is an approach that aims to reduce suffering and improve the quality of life for people who are living with life-limiting illness through the provision of: pain and symptom management; psychological, social, emotional, spiritual, and practical support; and support for caregivers during the illness and after the death of the person they are caring for. Palliative care provides comprehensive care throughout a person’s illness trajectory and is not solely limited to end of life care. (Adapted from: https://www.canada.ca/en/health-canada/services/health-care-system/reports-publications/palliative-care/framework-palliative-care-canada.html#p1.1/
In a palliative approach to care, the health care team identifies patients early on who would benefit from a palliative approach and initiates appropriate discussions and care management. Healthcare providers (e.g., primary care providers, nurses, stroke neurologist, palliative care specialists) are central to facilitate care to all patients throughout the many transitions. Specialist palliative care teams provide care in an advisory-consultant-educational-coaching role and shared care with primary care clinicians and specialist stroke teams. (Adapted from Staffing a Specialist Palliative Care Service, a Team-Based Approach: Expert Consensus White Paper, J Pal Med 2019).
End-of-life care: Part of the palliative approach that involves the management and treatment of dying patients, and support for their families and informal caregivers.
Goals of care for palliative care: In the event of a treatment decision needing to be made, the medical team may initiate a “goals of care” discussion with the patient and/or their substitute decision-maker. This conversation should establish or clarify the patient’s advance care wishes (see Section 10) in the context of their prognosis. Potential topics of discussion may include preferred location of palliation, the cessation of certain medical interventions, and comfort care options and preferences (e.g., resuscitation) in the event of immanent death. The intent is to have a written communication plan for the healthcare team help the team provide individualized palliative care in a timely manner. The person with stroke’s health status can change over time and the written plan should be reviewed in conjunction with such changes in status or changes in the healthcare team. The goals of care plan can be amended or revised at any time by the individual and/or substitute decision-maker.
Medical Assistance in Dying (MAiD): A procedure in which a patient receives medications to intentionally and safely end their life. Canadian federal law defines very specific criteria for MAiD eligibility. Each province and territory have established procedures for patients and clinicians to assess information about MAiD, as well as detailed MAiD assessment and provision protocols. Some people who have experienced a stroke may be eligible for MAiD. Clinicians providing post-stroke care should be aware of this and understand what to do if they are asked about MAiD.
Recommendations and/or Clinical Considerations
Palliative and End-of-Life Care
- A palliative approach should be used when there has been a catastrophic stroke or a stroke in the setting of significant pre-existing comorbidity, to optimize care for the patients, and their family members and informal caregivers [Strong recommendation; Low quality of evidence].
- The interdisciplinary stroke team should have discussions with the patient and decision-makers regarding the patient’s goals of care that includes consideration of the patient's diagnosis, prognosis, values, wishes, and whether care should focus on comfort or on prolonging life [Strong recommendation; Low quality of evidence].
- There should be regular communication with the patient, family, and informal caregivers to ensure their goals and needs are being met [Strong recommendation; Low quality of evidence].
- Palliative and end-of-life discussions should be ongoing and take into account reflect any changes in diagnosis or prognosis [Strong recommendation; Low quality of evidence].
- Topics to be discussed with patients, families, and informal caregivers may include the appropriateness of life-sustaining measures, including mechanical ventilation, enteral/intravenous feeding, and intravenous fluids, and the purpose of all medications, including those for symptom management [Strong recommendation; Low quality of evidence].
- Palliative care discussions should be documented and reassessed regularly with the healthcare team and substitute decision-maker [Strong recommendation; Low quality of evidence].
- Patients, families, informal caregivers, and the healthcare team should have access to palliative care specialists, particularly for consultation about patients with difficult-to-control symptoms, complex or conflicted end-of-life decision-making, or complex psycho-social family issues [Strong recommendation; Low quality of evidence].
- Decisions to initiate, withdraw, or forgo life-prolonging treatments after stroke, including artificial nutrition and hydration, should be made in discussion with the patient, family, and informal caregivers as appropriate, taking into account the best interests of the person, and including whenever possible their prior expressed wishes, either in an advanced care plan or through discussions [Strong recommendation; Low quality of evidence].
- Each member of the healthcare team should understand their roles and responsibilities as defined by their respective provincial or territorial college or professional organization regarding discussions about medical assistance in dying (MAiD) [Strong recommendation; Low quality of evidence].
- Organ and tissue donation should be discussed with families and informal caregivers as appropriate [Strong recommendation; Low quality of evidence].
- Supportive counselling, funeral support, and bereavement resources should be provided to families and informal caregivers after the patient’s death [Strong recommendation; Low quality of evidence].
Section 11 Clinical Considerations
- The interdisciplinary stroke team should have the appropriate communication skills and knowledge to respectfully address the physical, spiritual, cultural, psychological, ethical and social needs of the person with stroke, their family and informal caregivers who are involved in the patient’s end-of-life care.
- For patients with stroke at the end of life, the following areas may be considered where appropriate (note, other areas may be relevant as well for each individual):
- Need for formal palliative care consultation
- Cessation of routine vital sign checks, blood work, and diagnostic tests
- Oral care
- Eye care
- Respiratory distress and upper airway secretions
- Nausea and vomiting, incontinence and constipation,
- Skin and wound care
- Anxiety and depression. Refer to CSBPR Mood, Cognition and Fatigue module Section 1 for additional information.
- Interdisciplinary support for patients, families, and caregivers during dying process
- Preferred location of palliative care (e.g., home, hospice, another supportive living environment)
- Preferred person to be notified of patient’s death
Palliative care is a comprehensive approach to 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 with stroke will die during their initial hospitalization. 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 improve the satisfaction of the patient, family, caregivers, and the healthcare team.
People with lived experience recognized that palliative and end-of-life discussion can be very challenging. They suggested it would be helpful if one person from the healthcare team could be designated to ensure appropriate conversations are held with the appropriate parties about palliative and end-of-life care needs. They stated that sometimes people need “permission” to know it’s okay to bring up the topic with family, friends, and loved ones, or with a healthcare provider, and having someone initiate the conversation in a supportive environment can be helpful. They expressed that palliative and end-of-life care wishes should be brought up and discussed before they are required, to help give the person some control and let them express what they want and need for this time in their life.
To ensure people experiencing a stroke receive timely stroke assessments, interventions and management, interdisciplinary teams need to have the infrastructure and resources required. These may include the following components established at a systems level.
- Formalized palliative care processes and standards need to be established, including a team experienced in providing end-of-life care for patients with stroke, with the ability to monitor of quality of palliative care delivery.
- Established referral process to specialist palliative care services, either within the same organization or through telehealth technology in rural and remote locations.
- These services should be able to address the needs of patients and families, including physical, spiritual, cultural, psychological, and social needs.
- Communication and skills training for physicians, nurses, and allied health professionals that addresses supporting patients and their families through poor prognoses, and dealing with potential conflicts over patient wishes and decisions (e.g., consultation with ethics experts).
- Protocols for advance care planning and palliative care to elicit patient and family goals for care preferences, and for ensuring care preferences are documented and communicated to decision-makers and healthcare team members.
- Palliative care protocols that are integrated into ongoing care delivery.
- Information on palliative care and linkages to local stroke support organizations and their services for staff to share with patients and families.
- Proportion of patients with stroke who had a referral to specialist palliative care services during inpatient care.
- Proportion of patient who are dying following a stroke whose symptoms are routinely being assessed and monitored, and care plans adjusted as status changes.
- Proportion of dying patients with stroke who were who are cared for under a palliative care approach.
- Proportion of patients with stroke who die in the location specified in their palliative care plan.
Patient-oriented outcome and experience indicators:
- Family and caregiver ratings on the palliative care experience following the death in hospital of a patient with stroke.
- Documentation for palliative and end-of-life measures may appear in consult notes, nursing notes, social work notes, or physician notes. Just the presence of an order for palliative consultation should not be accepted as adequate documentation.
- Data quality may be an issue with some of these performance measures. Improved documentation should be promoted among healthcare professionals.
- Patient and family experience surveys should be in place to monitor care quality with end-of life situations.
Resources and tools listed below that are external to Heart & Stroke and the Canadian Stroke Best Practice Recommendations may be useful resources for stroke care. However, their inclusion is not an actual or implied endorsement by the Canadian Stroke Best Practices writing group. The reader is encouraged to review these resources and tools critically and implement them into practice at their discretion.
Healthcare provider information
- Palliative Care Education for All Care Providers
- Burton and Payne Palliative Care Pathway
- Bernacki RE, Block SD. Serious illness communications checklist. Virtual Mentor [Internet]. 2013;15(12):1045–9.
- Registered Nurses Association of Ontario Guidelines for End-of-Life Care
- Canadian Virtual Hospice: Decisions
- Canadian Virtual Hospice: My Grief Learning Modules
- Canadian Virtual Hospice: The Learning Hub
- Canadian Hospice Palliative Care Association Resource
- The Ontario Acute Stroke Best Practice Coordinators and the Ontario Regional Education Group in collaboration with Heart & Stroke: Key Changes to the 2022 Acute Stroke Management Canadian Stroke Best Practice Recommendations
Information for people with lived experience of stroke, including family, friends and caregivers
- Heart & Stroke: Your Stroke Journey
- Heart & Stroke: Post-Stroke Checklist
- Heart & Stroke: Acute Stroke Management Infographic
- Heart & Stroke: End of life care and Palliative Care
- Canadian Hospice Palliative Care Association Resource
- Canadian Virtual Hospice: Decisions
- Canadian Virtual Hospice: My Grief Learning Modules
- Canadian Virtual Hospice: The Learning Hub
Sex and Gender Considerations 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 with stroke will die during their initial hospitalization.
The palliative care needs of 191 acute patients with stroke 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, and 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 other conditions including cancer, congestive heart failure, chronic obstructive pulmonary disease, and dementia. Of the total stroke admissions during the three-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, patients with stroke 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%). The relatives of patients who had died from a stroke were interviewed approximately 6 weeks later and questioned about their perceptions of the quality of dying they received in the hospital (Reinink et al., 2021). While the participants were generally satisfied with the quality of care received, there were a few areas of concern that were related to feeding, inability to say goodbye to loved ones, and not retaining a sense of dignity. Eriksson et al. (2016) used data from 1,626 patients included in a national quality register for end-of-life care who 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 patients with stroke 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 patients receive the most appropriate care possible in the last days of their lives. However, there is an absence of high-quality of evidence to suggest that the pathways 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 program 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 to 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. In terms of specific interventions designed to address many common palliative care issues including dysarthria, anxiety, depression, urinary and fecal incontinence, vomiting, delirium, and pressure ulcers, Cowey et al. (2021) concluded there was insufficient evidence to guide their use, following a review of 77 primary studies including patients with stroke requiring palliative care.
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 of these 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, have suffered a left middle cerebral artery stroke, have higher initial stroke severity, have received t-PA, and be 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 stroke 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, and 40 patients were transferred to palliative care after a mean of five days. Thirty-eight 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% of 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 or withholding further treatment. Patients died an average of 2.6 days following therapy restrictions.
Sex and Gender Considerations
Women are less likely to receive critical life-prolonging care than men. In a retrospective study including 137,358 adult patients hospitalized for acute stroke in Ontario from 2003-2017 (Joundi et al. 2021), compared with men, each year after 2003 was associated with 20% decreased odds of receiving ICU care, among women. The odds of receiving mechanical ventilation, a percutaneous feeding tube, and tracheostomy were all significantly lower for women, regardless of stroke type (ischemic vs. intracerebral hemorrhage). Women are also more likely to opt for comfort care measures than men (Gott et al. 2020).
Singh et al. (2017) included 395,411 patients with stroke include in the National Inpatient Sample from 2010-2012. Demographics, comorbidities, procedures, and outcomes between patients with and without a palliative care encounter (PCE) were compared. Patient characteristics that were independently associated with the use of PCE were older age, hemorrhagic stroke, white race and female sex.