7. Stroke Management in Long-term Care

Note

These recommendations apply specifically to individuals with stroke living in or transitioning to long-term care, complex or continuing care settings, including those who were already living in long-term care at the time of their stroke. These recommendations are intended to be implemented in addition to standard care (e.g. physical, functional, emotional, cognitive, communication and social needs) provided in complex, continuing or long-term care.

Also refer to recommendations in CSBPR Secondary Prevention of Stroke, ⁶ Vascular Cognitive Impairment ⁵ and Rehabilitation, Recovery and Community Participation following Stroke: Part One ⁸ modules for additional information on management of individuals with stroke living in long-term care settings.

Recommendations and/or Clinical Considerations

7.0 General Principles

Interdisciplinary care planning in long-term, complex and continuing care should involve all members of the healthcare team, individuals with stroke, their family and caregivers in shared decision-making [Strong recommendation; Moderate quality of evidence].
Healthcare providers who care for individuals with stroke living in long-term care, complex and continuing care and similar settings should be knowledgeable in all aspects of stroke care and participate in ongoing stroke-related professional education [Strong recommendation; Moderate quality of evidence].

7.1 Transition Planning and Assessment in Long-term Care

A discharge summary, along with the care plan, should accompany the individual to a long-term or complex continuing care setting [Strong recommendation; Low quality of evidence].
All individuals who transition to a long-term, complex and continuing care setting following a stroke should have an initial medical and functional assessment as soon as possible after admission [Strong recommendation; Low quality of evidence]. Refer to Section 3.1 for additional information.
1. The initial assessment of functional, physical, emotional, cognitive, communication and perceptual status should align with current evidence-based recommendations for assessment of individuals with stroke and local protocols where possible [Strong recommendation; Moderate quality of evidence].
Assessment results should be used to inform individualized care plans to meet the needs and goals of individuals living in long-term or complex continuing care following a stroke and optimize rehabilitation, recovery, and quality of life [Strong recommendation; Moderate quality of evidence].
Individualized care plans should address high risk areas of nutrition, oral care, mobilization, and incontinence, and reduce the risk of complications such as urinary tract infection (UTI), aspiration pneumonia, and venous thromboembolism [Strong recommendation; Moderate quality of evidence].
Individualized care plans should be updated to reflect changes in functional status and goals of the individual with stroke [Strong recommendation; Moderate quality of evidence]. Note, such changes may be improvements or declines in various domains of health.
Individuals with stroke living in long-term, complex and continuing care setting should be referred to appropriate healthcare professionals for further consultation when changes in functional status are identified if within goals of care [Strong recommendation; Moderate quality of evidence].

7.2 Rehabilitation and Restorative Care

Individuals admitted to a long-term care setting with ongoing rehabilitation goals post-stroke should continue to have access to specialized stroke services (such as physiotherapy, occupational therapy, recreation therapy and speech-language therapy) [Strong recommendation; Moderate quality of evidence]. Refer to CSBPR Rehabilitation, Recovery and Community Participation Following Stroke Part One, Section 5 for additional information.⁸
Individuals with stroke who live in long-term or complex continuing care should also have access to other health disciplines and services that can support recovery, social engagement and spiritual and emotional well-being [Strong recommendation; Low quality of evidence].
At any point in their recovery, individuals with stroke living in long-term care who have experienced an improvement in functional status and who may benefit from new or additional rehabilitation services should be assessed and considered for a trial of higher intensity inpatient or outpatient rehabilitation [Strong recommendation; Low quality of evidence].

7.3 Support and Education for the Individual with Stroke, their Family and Caregivers

To facilitate active participation in care-planning in long-term or complex continuing care settings, individuals living with stroke, their family and caregivers should be provided with training, education and support on:
1. How to participate in care planning and to be involved in shared decision-making. [Strong recommendation; Low quality of evidence].
2. The process for appointing a substitute decision-maker (proxy or agent), developing advance directives for care, and palliative care options as appropriate [Strong recommendation; Low quality of evidence]. Refer to Section 8 and Section 9 below for additional information on advance care planning and palliative care.
3. How to access appropriate assessments for rehabilitation and restorative care [Strong recommendation; Low quality of evidence].
4. How to advocate for any concerns with their care [Strong recommendation; Low quality of evidence].
5. How to monitor changes in health-related quality of life [Strong recommendation; Low quality of evidence].
Long-term care services who serve individuals with stroke should provide access to high quality end-of-life care for those who need it [Strong recommendation; Moderate quality of evidence].

Rationale +-

The transition from hospital to long-term care for individuals with stroke can be a difficult step for those who cannot return to their previous living arrangements in the community, due to significant impairments or complex medical needs. It can be a stressful and challenging time for individual with stroke, families and caregivers. The move requires careful coordination to ensure continuity of care, with staff who are knowledgeable and competent in caring for both the medical needs and rehabilitation goals of individual with stroke.

Individuals with stroke strongly express that those living in Long-term Care (LTC) or complex continuing care (CCC) should have the same access to stroke services as others living in other settings. They emphasize that care plans in LTC/CCC should reflect and address the individual’s needs and goals related to their stroke care. It can be difficult for those living in LTC/CCC to advocate for access to rehabilitation services, and they stress the importance of receiving support and champions to ensure rehabilitative needs of individuals living in LTC/CCC are being met. Access to recreation and leisure activities in LTC/CCC is also an important aspect of health and well-being.

They also highlight the importance of mental health support during the transition to LTC/CCC and value peer support programs that pair new residents with experienced ones for guidance. They highlight the significant impact that the LTC/CCC environment may have on recovery and mental health and encourage strong mental health support to be available and easily accessible.

System Implications +-

Successful transition to long-term care and complex continuing care (LTC/CCC) for individuals with stroke, their families, and caregivers requires system leaders, planners and healthcare providers across the continuum of care to work together to ensure:

Processes to support timely and efficient transfer from settings across the stroke care continuum including acute care or inpatient rehabilitation to long-term care or complex continuing care, avoiding multiple transfers before reaching planned destination.
Appropriate follow-up by healthcare providers to support ongoing access to all needed stroke services including secondary prevention and rehabilitation services during transition to LTC/CCC settings; and while in LTC/CCC settings to support stroke recovery goals, including rehabilitation goals for individuals with stroke, their family and caregivers.
Inclusion of individuals with stroke, their family and caregivers as key participants in an evolving care plan and regular follow-up assessments as appropriate.
Communication strategies and processes to ensure timely sharing of information across all healthcare providers, including between long-term care team and community/hospital healthcare teams.
Programs that support timely and affordable access to mobility, communication, sensory and other assistive devices for individuals with stroke in long-term care.
Ongoing stroke specific education and training for healthcare professionals, individuals with stroke and their family and caregivers in the community and LTC/CCC settings to increase stroke care expertise. Training to be provided by a range of healthcare disciplines, such as physiotherapy, occupational therapy, speech-language pathology, and dietitians.
Strategies and services to assist individuals with stroke to maintain, enhance, and develop appropriate social support, and to re-engage in desired and or personally valued social and recreational activities.

Performance Measures +-

System Indicators

Proportion of long-term care homes where clinical staff receive annual stroke-specific education.
Proportion of long-term care residents with stroke who have access to physiotherapy, occupational therapy, speech-language pathology, and social work support.
Proportion of long-term care homes that have protocols for stroke management (e.g., for secondary prevention, mobility, communication, and nutrition).

Process indicators

Proportion of individuals with stroke who were living independently (e.g., at home) prior to stroke who are admitted to long-term care following stroke.
Proportion of readmissions to acute care for stroke-related causes following discharge to long-term care, stratified by type of stroke.
Proportion of individuals with stroke in long-term care who receive a standardized assessment within 7 days of LTC admission (e.g., mobility, cognition, communication, swallowing).
Proportion of individuals with stroke in long-term care with documented, individualized care plans addressing stroke-related impairments and goals.
Changes in functional status from time of admission to LTC compared at 3 months, 6 months and one year following admission to long-term care.
Number of visits to an emergency department within 3 months, 6 months and one year following admission to long-term care, stratified by reason for visit or hospital admission.

Person-Oriented Measures (PREMS, PROMS)

Measure of burden of care for family and caregivers living in the community and change in burden scores from before long-term care admission, and at 3 months, 6 months and one year following admission to long-term care. Standardized assessment tools should be used.
Changes in quality of life measured at regular intervals during recovery and participation, and reassessed when changes in health status or other life events occur (e.g., at 60, 90- and 180-days following stroke).
Proportion of individuals with stroke in long-term care whose mobility or self-care function is maintained or improved at 3- and 6-months post-transfer.
Rate of hospital transfers within 90 days and one year of admission for preventable stroke-related complications (e.g., falls, seizures, infections).

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 7

Following a stroke, high levels of disability may warrant admission to a long-term care (LTC) institution. Independent predictors of discharge to a nursing home have been identified and include increasing age, increasing dependency for ADLs and absence of availability of a caregiver. ^146-150 Pooling the results from 18 studies, Burton et al. ¹⁴⁷ reported that a median of 17% of individual with stroke were transferred directly to an LTC facility following discharge from an acute care hospital with a diagnosis of stroke. Approximately 10% to 11% of individual with stroke admitted to an acute care hospital were residing at an LTC facility at one, three- and 6-months following stroke. ¹⁵¹ Brodaty et al. ¹⁴⁹ followed 202 participants, mean age of 72 years, without dementia who had suffered an ischemic stroke. Among those who survived, nursing home admission rates were 24% at 5 years and 32% at 10 years. Walsh et al. ¹⁵² reported that among a group of 136 patients admitted to a stroke unit of a single hospital (median age was 77 years), 40.3% of individual with stroke were institutionalized at 4 years.

Patients discharged to a LTC facility require discharge planning much like individuals returning to their own homes. Several studies have examined factors for effective discharge communication between inpatient hospital care and institutional care facilities. Clear communication between facilities regarding nutritional needs, functional status, communication abilities, risk assessment, and medical management is necessary for an optimal transition.^{153, 154}

Individuals residing in skilled nursing facilities with staff trained in stroke management, and who have access to post stroke therapy resources, may experience better quality of life. In a study examining individuals living in a nursing home who received 24-hour care including access to psychiatric care, physician visits, daily physiotherapy, and weekly massage services, nursing home residents experienced greater quality of physical, psychological, social, and environmental quality of life scores compared with individuals living in their own homes receiving many of the same services.¹⁵⁵ Individuals residing in nursing homes also experienced better perceived quality of life and health status than their residentially residing counterparts. However, the authors of a Cochrane review (Fletcher-Smith et al. ¹⁵⁶) stated there was insufficient evidence to support or refute the efficacy of occupational therapy (OT) interventions for improving, restoring or maintaining independence in ADL for individuals with stroke residing in care homes. In the OCTH trial, Sackley et al. ¹⁵⁷ also examined the potential benefit of OT provided in long term care homes to residents with a history of stroke. 1,042 care home residents from 228 facilities, who were elderly (mean age 83 years) and with a high proportion who were severely disabled were randomized to an individualized program with a focus on improvement or maintenance of functional capacity, adaptations to the environment and included an education component for the care home staff, or to usual care. The median length of stay between care home admission and trial randomization was 2.2 years. The mean number of OT visits was 5.1 per participant. There was no significant difference in mean Barthel Index scores (primary outcome) between groups at 3, 6 or 12 months, or in any of the secondary outcomes. The authors concluded there was no evidence of benefit of the program.

Sex & Gender Considerations

The literature regarding sex and gender differences in the rehabilitation outcomes of residents of LTC facilities following stroke, is limited. Some studies exist that address sex differences in residents with mixed medical diagnoses. For example, Davilla et al. ¹⁵⁸ reported that among 64 nursing home residents who were interviewed, men reported significantly lower quality of life compared with women. Men were less satisfied with life, had fewer and weaker social connections and reported being less able to rely on family for support.