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Section 4.3

Advanced Care Planning

DEFINTIONS

Advance care planning is a process of helping a patient reflect on and communicate his or her goals, values, and preferences for future healthcare, to be used should they become incapable of giving informed consent. Central to this process are conversations between the patient, his or her family, and the healthcare providers.

For stroke patients, the goal of advance care planning is a shared understanding of the stroke, comorbidities, and prognosis; the benefits and burdens of potential treatments; types and location of care; and the individual’s goals and values as they pertain to such care. It is an ongoing process that should be reviewed regularly or as the situation changes. These conversations may lead to a written document, often called a personal or advance directive, which names a substitute decision maker, proxy, or agent, and outlines the person’s desired medical interventions. Advance care planning can also result in rich conversations about meanings and fears around illness and dying, spirituality, and after-death religious practices.

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

End-of-life care or terminal care is part of the palliative approach and is the management and treatment of dying patients and their families. The end-of-life period often involves a period of change (e.g. worsening diagnosis) rather than an acute event.

4.3.1     Advance Care Planning

Patients surviving a stroke and their families should be approached by the stroke healthcare team to participate in advance care planning [Evidence Level C].

  1. Advance care planning may include identifying a substitute decision-maker (proxy or agent), implementing a personal directive [Evidence Level C], and discussion of the patient’s preferences and the medical appropriateness of therapies such as feeding tubes, hydration, treatment of the current illness, admission to intensive care, ventilation, cardio-pulmonary resuscitation, and place of care [Evidence Level B].
  2. The goals of therapy should be revisited periodically and when there is a change in health status [Evidence Level B].
  3. The interprofessional team should have the appropriate communication skills and knowledge to address the physical, spiritual, psychological, ethical, and social needs of palliative or dying patients and their families [Evidence Level C].

4.3.2     Palliative and End-of-Life Care

The palliative approach should be used with those experiencing significant morbidity after a stroke, or to optimize end-of-life care for dying stroke patients and their families [Evidence Level B].

  1. Communication with patients and their families should provide, on an ongoing basis, information and counseling regarding diagnosis, prognosis, and management, including:
    1. the appropriateness of life-sustaining measures including mechanical ventilation, enteral/intravenous feeding, and intravenous fluids [Evidence Level B]
    2. oral care [Evidence Level C]
    3. assessment and management of pain [Evidence Level B]
    4. assessment and management of delirium [Evidence Level C]
    5. assessment and management of respiratory distress [Evidence Level B]
    6. assessment and management of incontinence, nausea, vomiting, constipation, and skin and wound care [Evidence Level C]
  2. Patients and the healthcare team should have access to palliative care specialists for consultation on all palliative stroke patients [Evidence Level C].
  3. Palliative care specialists should be involved in the care of all patients with difficult-to-control symptoms, complex or conflicted end-of-life decision making, or complex psycho-social family issues [Evidence Level C].
  4. The interprofessional team should have the appropriate communication skills and knowledge to address the physical, spiritual, psychological, and social needs of palliative or dying patients and their families [Evidence Level C].
  5. Palliative care pathways should be considered to introduce and monitor standards of care provided to palliative or dying stroke patients [Evidence Level B].
    Rationale

    Implementing stroke best practices can contribute to reductions in morbidity and mortality; however, stroke remains the third leading cause of death in Canada. There is evidence of 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 healthcare team.

    System Implications
    • Established referral process to specialist palliative care services, either within the same organization or through telehealth technology in rural and remote locations.
    • Established referral process to spiritual care services.
    • Communication training for physicians, nurses, and allied health professionals that addresses supporting patients with poor prognoses and their families.
    • Advance care-planning conversations to elicit patient and family goals for care preferences.
    • Palliative care pathways that are integrated into care delivery.
    Performance Measures
    1. Percentage of stroke patients who have been approached to participate in advance care planning and/or who have a documented conversation with a healthcare provider about resuscitation, hydration, or feeding preferences.
    2. Percentage of stroke patients who identify a substitute decision-maker.
    3. Percentage of stroke patients who complete a personal or advance care directive documented on their chart.
    4. Percentage of deceased stroke patients who accessed specialist palliative care services.
    5. Percentage of stroke patients who die in the location specified in their personal or advance care directive.
    6. Percentage of dying patients who were placed on an end-of-life care pathway.

    Measurement Notes

    • Documentation for the advance care 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.
    • Data quality may be an issue with some of these performance measures. Improved documentation should be promoted among healthcare professionals.
    Implementation Resources and Knowledge Transfer Tools
    Summary of the Evidence

    Timely, recurrent, sensitive communication is key to determining the goals of care for every patient who has had a stroke. Advance care planning may provide peace of mind to patients and reduce the stress of families faced with representing their loved ones wishes during a subsequent critical illness.319-322 Secondary stroke prevention clinics and community settings are ideal for introducing the concept of ACP or following up on ACP conversations initiated in acute care. It is important to recognize that an individual’s healthcare preferences may change with time or circumstances. They should be reviewed periodically or when there is a change in health status or care location.323-325

    Palliative Care is defined by the World Health Organization (WHO) as ‘the active total care of patients whose disease is not responsive to curative treatment; (i.e. chronic disease.326 Palliative care is comprehensive care that aims to control pain, provide comfort, improve quality of life and effectively manage patients and their families’ psychosocial needs during advanced or chronic illness. Palliative care can be provided in acute care hospitals, long-term care facilities, hospice facilities, or in home settings. The palliative approach, attending to physical, social, psychological or spiritual needs, of patients and their families need not be reserved for those imminently dying.327

    Effective communication among all involved in EOL care (e.g. patients, family members, nurses, physicians) can help address issues that are important to patients during this period.328Components of decision making regarding EOL care include information exchange, discussions about treatment options, and making–or not making–decision.327, 328 Specific issues important to patients during the EOL period include: being informed of their prognosis; management of pain and symptoms; retaining a sense of autonomy; feeling safe, in control, and cared for; being able to participate in decision making and preparations for death; maintaining relationships; and achieving a sense of completion.  Planning for EOL care has been identified as lacking in many patient-physician encounters327,329,330 while concordance between patient and healthcare providers/surrogate decision-makers understanding of EOL decisions must be ensured.322, 331In a recently published study about EOL care needs in patients with acute stroke, Payne et al. reported that patients consistently raised issues related to communication and information provision about stroke and the wish to be involved in their own medical decisions and management.327

    In these recommendations a distinction is made between generalist and specialist palliative care. Generalist palliative skills (the awareness of the palliative philosophy, sensitive communication and basic symptom management) are required by healthcare providers across all disciplines to function effectively in caring for stroke patients.326 Specialist palliative care providers (e.g. nurses, physicians, allied health, spiritual care providers and volunteers with advanced palliative care training) and services (e.g. hospice, palliative home care and consult teams) should be available to provide support when suffering persists despite the use of generalist palliative interventions.332

    There is growing evidence that the use of palliative care pathways for those imminently dying, such as the Liverpool care pathway can enhance quality improvement initiatives in end-of-life care.321, 322 Palliative care pathways provide a tool to initiate, audit and implement cycles of change in the delivery of care for dying patients. There is moderate evidence demonstrating positive outcomes of such pathways for patients, families and healthcare team, 323 although there is limited evidence for their use specifically in stroke.324 Developing or using existing pathways that describe standards of care across physical, psychological, social, spiritual domains may allow care teams to optimize the delivery of care to dying patients. Similarly, structured and facilitated programs may enhance the advance care planning process between patients and the healthcare team.324