Previous Section 8. Advance Care Planning
NEW Stroke Systems of Care
NEW Stroke Systems of Care

9. Palliative and End-of-Life Care

Note

Note: These recommendations apply to all individuals with stroke regardless of stroke type or their stage along the stroke continuum of care and regardless of setting.

Definitions and Descriptions

Palliative care is an approach that aims to reduce suffering and improve the quality of life for individuals 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 individual 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. 44

In a palliative approach to care, the health care team identifies individuals 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 individuals 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). 167

End-of-life care is a part of the palliative approach that involves the management and treatment of dying individuals, 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 individual and/or their substitute decision-maker. This conversation should establish or clarify the individual’s advance care wishes (see Section 8) 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., excluding some or all components of resuscitation) in the event of immanent death or sudden decline in health status. The intent is to have a written communication plan for the healthcare team to provide individualized palliative care in a timely manner. The individual 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, and the fluid nature of these goals should be made clear.

Medical Assistance in Dying (MAiD): Medical assistance in dying (MAiD) is a process that allows an eligible individual to receive assistance from a medical practitioner to intentionally and safely end their lives.  Canadian federal law defines very specific criteria for MAiD eligibility. Each province and territory have established procedures and protocols for assessment for MAiD. Some individuals who have experienced a stroke may be eligible for MAiD under specific, legally defined criteria. Clinicians providing post-stroke care should understand their expectations and obligations regarding MAiD and be able to provide effective referrals when appropriate. 168

Recommendations and/or Clinical Considerations
  1. A palliative approach should be considered when there has been a catastrophic stroke or a stroke in the context of significant pre-existing comorbidity, to optimize care for the individuals, and their family members and informal caregivers [Strong recommendation; Low quality of evidence]. 
  2. The interdisciplinary stroke team should have discussions with the individual and decision-makers regarding the individual’s goals of care that includes consideration of the diagnosis, prognosis, values, wishes, and whether care should focus on comfort or on prolonging life [Strong recommendation; Low quality of evidence]. 
    1. There should be regular communication with the individual, family, and informal caregivers to ensure their goals and needs are being met [Strong recommendation; Low quality of evidence]. 
    2. Palliative and end-of-life discussions should be ongoing and reflect any changes in diagnosis or prognosis [Strong recommendation; Low quality of evidence]. 
    3. Topics to be discussed with individuals, 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]. 
  3. Palliative care discussions should be documented and reassessed regularly with the healthcare team and substitute decision-maker [Strong recommendation; Low quality of evidence]. 
  4. Individuals with stroke, families, informal caregivers, and the healthcare team should have access to palliative care specialists, particularly for consultation about individuals 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]. 
  5. Decisions to initiate, withdraw, or forgo life-prolonging treatments after stroke, including artificial nutrition and hydration, should be made in discussion with the individual, family, and 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]. 
  6. 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]. 
  7. Organ and tissue donation should be discussed with families and informal caregivers as appropriate [Strong recommendation; Low quality of evidence].
  8. Supportive counselling, funeral support, and bereavement resources should be provided to families and informal caregivers after the individual’s death [Strong recommendation; Low quality of evidence].
Section 9 Clinical Considerations
  1. 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 individual with stroke, their family and informal caregivers who are involved in the individual’s end-of-life care. 
  2. Referral and liaison with community-based hospice or palliative care should be coordinated based on individuals’ needs and goals of care. 
  3. For individuals 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): 
    1. Need for formal palliative care consultation 
    2. Cessation of routine vital sign checks, blood work, and diagnostic tests 
    3. Oral care 
    4. Eye care 
    5. Pain management
    6. Delirium 
    7. Respiratory distress and upper airway secretions 
    8. Nausea and vomiting, incontinence and constipation
    9. Nutrition and hydration
    10. Skin and wound care 
    11. Seizures 
    12. Anxiety and depression. 
    13. Interdisciplinary support for individuals, families, and caregivers during dying process 
    14. Preferred location of palliative care (e.g., home, hospice, another supportive living environment) 
    15. Preferred person to be notified of individual’s death
    16. Referral and liaison to MAiD team based on individual’s needs and goals of care
  4. Consider the use of validated decision aids to support shared decision making and documentation.
Rationale +-

Palliative care is essential following stroke due to the complex and often life-altering consequences that can arise. Palliative care addresses these multidimensional needs by focusing on symptom management, emotional support, and alignment of care with patient and family goals. It is particularly important for those with severe strokes, or a poor prognosis, helping to ensure comfort, dignity, and informed decision-making at the end of life. Integrating palliative care early can also facilitate discussions around goals of care and advance directives, especially when individual with stroke lose decision-making capacity.

Individuals with lived experience of stroke recognized that palliative and end-of-life discussion can be very challenging. Palliative care is often misunderstood as being only about end-of-life, but individuals emphasize that it can also be about finding positivity and support. They suggested it would be helpful if one individual 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 share that palliative care is not often discussed, but believe it should be, and state that sometimes individuals 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. Peer support is seen as a helpful space for these discussions, offering a non-judgmental environment where individuals can reflect and share experiences.  

They expressed that palliative and end-of-life care wishes should be brought up and discussed before they are required, to help give the individual some control and let them express what they want and need for this time in their life. They also note that each individual may take a different approach to palliative care discussions, based on their own personal context, values, preferences, culture and beliefs.

System Implications +-

Following stroke, systems should be in place to optimize successful transitions and return to life roles, health management, activities and social participation.  These may include:

  1. Communication and referral pathway established between the hospital and community based palliative organizations to ensure individual with stroke is connected appropriately and in a timely manner.
  2. Formalized palliative care processes and standards need to be established, including a team experienced in providing end-of-life care for individual with stroke, with the ability to monitor of quality of palliative care delivery.
  3. Established referral process to specialist palliative care services, either within the same organization or through telehealth technology in rural and remote locations. 
  4. These services should be able to address the needs of individual with stroke and families, including physical, spiritual, cultural, psychological, and social needs.
  5. Communication and skills training for physicians, nurses, and allied health professionals that addresses supporting individual with stroke and their families through poor prognoses, and dealing with potential conflicts over patient wishes and decisions (e.g., consultation with ethics experts). 
  6. 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.
  7. Palliative care protocols that are integrated into ongoing care delivery.
  8. Information on palliative care and linkages to local stroke support organizations and their services for staff to share with individual with stroke and families.
Performance Measures +-

System Indicators

  1. Proportion of hospitals or LTC facilities with clinical protocols for identifying and managing palliative needs in individual with stroke.
  2. Proportion of hospitals or LTC facilities with access to interdisciplinary palliative teams (e.g., physicians, nurses, spiritual care, social workers, therapists).

Process indicators

  1. Proportion of individuals with stroke who had a referral to specialist palliative care services during inpatient care.
  2. Proportion of individuals with stroke who are dying following a stroke whose symptoms are routinely being assessed and monitored, and care plans adjusted as status changes.
  3. Percentage of individuals with stroke with documented goals-of-care or ACP discussions within 7 days of admission or following deterioration. 
  4. Proportion of dying individuals with stroke who were who are cared for under a palliative care approach.
  5. Percentage of individual with stroke receiving palliative care who have regular assessment and documentation of pain, dyspnea, agitation, and other symptoms using a standardized tool.
  6. Median number of days from palliative care referral to death among individual with stroke.

Patient-oriented outcome and experience indicators

  1. Proportion of individuals with stroke who die in the location specified in their palliative care plan.
  2. Family and caregiver ratings on the palliative care experience following the death in hospital of a individuals with stroke.
  3. Family-reported experience with communication, support, and symptom management through post-death surveys.
Implementation Resources and Knowledge Transfer Tools +-

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 or Heart & Stroke. The reader is encouraged to review these resources and tools critically and implement them into practice at their discretion.

Healthcare Provider Information

Resources for Individuals with Stroke, Families and Caregivers

Summary of the Evidence +-

Evidence Table and Reference List 9

Palliative care is an important component of stroke care given that a high proportion (12%) of patients will die within 30 days of stroke onset. 169 The palliative care needs of 191 acute individuals 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, family and social issues. 170 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. 171 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 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 with patients with other conditions, individuals 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 subtype, 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. 172 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. 173 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 individual with stroke; however, family members were less likely to be offered bereavement follow-up. Patients were also less likely to be informed about the 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. 174 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. 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. 175 concluded there was insufficient evidence to guide their use, following a review of 77 primary studies including individuals with stroke requiring palliative care.

Several studies have examined the characteristics of patients who are transferred to palliative care units. San Luis et al. 176 included data retrieved from chart review of 236 patients admitted to hospital with a confirmed diagnosis of stroke, of whom 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, have suffered a left MCA stroke, had higher initial stroke severity, received intravenous alteplase, and were admitted on a weekday. Gott et al. 177 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. 178 reviewed the charts of 117 patients with ischemic or hemorrhagic, who died during hospitalization, in order 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. Forty patients were transferred to palliative care after a mean of 5 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% 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.

Sex & 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. 179 reported that, among women, each successive year after 2003 was associated with a 20% reduction in the odds of receiving ICU care, compared with men. 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.180

Singh et al. 181 included 395,411 individuals with stroke included 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.

Stroke Resources
Previous Section 8. Advance Care Planning