May 23, 2013
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.
End-of-life care or terminal 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 diagnosis) rather than an acute event.
4.3 Palliative and End-of-Life Care
The 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 dying stroke patient, family, and informal caregivers [Evidence Level B].
- Communication with patients, families, and informal caregivers should provide, on an ongoing basis, information and counseling regarding diagnosis, prognosis, and management, including:
- the appropriateness of life-sustaining measures including mechanical ventilation, enteral/intravenous feeding, and intravenous fluids [Evidence Level B];
- 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];
- oral care [Evidence Level C];
- assessment and management of pain [Evidence Level B];
- assessment and management of delirium [Evidence Level C];
- assessment and management of respiratory distress and secretions [Evidence Level B];
- assessment and management of incontinence, nausea, vomiting, constipation, and skin and wound care [Evidence Level C].
- Patients, families, informal caregivers, and the healthcare 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].
- The interprofessional team should have the appropriate communication skills and knowledge to address the physical, spiritual, 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].
- 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].
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 healthcare team.
- 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.
- Protocols for advanced care planning to elicit patient and family goals for care preferences, and ensure these are documented and communicated to decision makers and healthcare team members.
- Palliative care protocols that are integrated into ongoing care delivery.
- 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, and/or feeding preferences.
- Percentage of stroke patients who identify a substitute decision-maker.
- Percentage of stroke patients who complete a personal or advance care directive documented on their chart.
- Percentage of deceased stroke patients who accessed specialist palliative care services.
- Percentage of stroke patients who die in the location specified in their personal or advance care directive.
- Percentage of dying patients who were placed on an end-of-life care protocol.
- Family and caregiver ratings on the palliative care experience following the death in hospital of a patient with stroke.
- 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.
- Patient and family experience surveys should be in place to monitor care quality with end-of life situations.
- Canadian Stroke Best Practices Implementation guide: Taking Action Towards Optimal Stroke Care
- National Stroke Foundation (Australia) Palliative Care protocol
- Burton and Payne Palliative Care Pathway
- Registered Nurses Association of Ontario Guidelines for End-of-Life Care
- Province of Ontario Guide to Advanced Care Planning
- Canadian Stroke Best Practices case study of a palliative care conversation between healthcare team members and families of dying patients
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) (World Health Organization, 2010). 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 and does not need to be reserved for those who are imminently dying (Payne, Burton, Addington-Hall, & Jones, 2010).
Effective communication among all involved in end-of-life care (e.g. patients, family members, nurses, physicians) can help address issues that are important to patients during this period. In a study exploring end-of-life care needs in patients with acute stroke, Payne et al. reported that patients frequently have issues related to communication and information provision and wish to be more involved in their own medical decisions and management (Payne et al., 2010). Components of decision making regarding end-of-life care include information exchange, discussions about treatment options, and making–or not making–decisions (Payne et al., 2010). Specific issues that are important to discuss with patients during the end-of-life period include the patient’s prognosis, symptom management, and participation in decision-making as well as issues related to spirituality and psychosocial functioning and well-being (Cowey, 2012).
Palliative care pathways are tools that can be used to initiate, audit and implement cycles of change in the delivery of care for dying patients. In a recent Cochrane Review, Chan and colleagues failed to identify any randomized, quazi-randomized, or well-controlled before and after studies investigating the use of end-of-life care pathways within any population. Although 28 studies (3 of which were controlled before and after studies) examining end-of-life care pathways were identified, none met study design inclusion criteria. Given the lack of RCTs or other well-designed studies investigating the use of end-of-life care pathways, the authors concluded that recommendations regarding the use of such pathways cannot be made. In contrast, in a review of all published literature (including letters and editorials) that examined the palliative care needs of stroke patients, Stevens et al. identified seven articles for inclusion (Stevens et al., 2007). One small intervention study (Jack et al., 2004) (n=20) was indentified describing the implementation of a palliative care pathway (the Liverpool Care Pathway) on an acute stroke unit. Following a before and after comparison, it was reported that Implementation lead to ‘marked’ improvement in the documentation of 6/7 areas of palliative care. Although larger, more rigorous trials are needed to examine the benefits of palliative care pathways, the use of such pathways is generally considered best-practice for end-of-life care (Cowey, 2012). 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.
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 (World Health Organization, 2010). 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 (Cowey, 2012).