There is Always Something We Can Do -- Palliative and End-of-Life Care in Stroke

Palliative care is not just end-of-life care. It is about improving quality of life “throughout the continuum of illness.” It seeks to recognize and fulfill patient-centered goals of care. The American Heart Association/American Stroke Association’s new scientific statement, “Palliative and End-of-Life Care in Stroke,” represents a major advance in the field of palliative care for stroke patients.¹ Numerous recommendations are made for primary providers of stroke patients, covering virtually all aspects of palliative and end-of-life care in stroke. We commend Holloway et al. for creating the most comprehensive set of recommendations to date and extending the traditional concept of palliative stroke care beyond end-of-life care.

Stroke case fatality has declined steadily over the past 50 years but the number of stroke survivors with disabilities has increased.² However, death is sometimes the best and most appropriate patient-centered outcome after stroke. Therefore, stroke physicians must be able to provide primary palliative care to manage both impending mortality and survivors with post-stroke complications. Recommendations on how best to communicate with patients and families, estimate and share prognosis, make decisions regarding goals of care with substitute decision makers, manage post-stroke symptoms such as pain and fatigue, and provide emotional and spiritual support to patients and their families fill an important void. Importantly, primary palliative care should be provided as a complement to other aspects of stroke care, such as acute stroke treatment, prevention, and rehabilitation, meaning that palliative care is initiated early on.

One aspect that is not covered in the guideline is advance care planning for stroke survivors. In addition to making decisions for the immediate future (such as how to manage aspiration risk or cardiac complications), physicians should help patients and their families anticipate future events. How should we best care for you if you are unable to speak in the future? Who would you want to speak for you? Does that person know your wishes? This type of advance care planning has been found to be lacking in stroke management.³ We need to normalize these discussions for all patients. An advance care directive is not a substitute for these discussions because directives are often not specific enough to guide treatment decisions.⁴ Substitute decision makers must have a clear understanding of the patient’s values and goals. Acute health events, including stroke, provide a key opportunity to initiate advance care planning.

For stroke physicians, several challenges exist in the implementation of the AHA/ASA statement. Significant uncertainty often surrounds prognostication and thus treatment and disposition decision-making, such as when to refer for hospice care, is difficult. Although criteria for hospice eligibility exist, these criteria have not been validated in modern care settings. Holloway et al. rightly advise the importance of acknowledging prognostic uncertainty to patients and family members. Not infrequently, we’ve encountered patients with a severe stroke, where a well meaning clinician has diagnosed a life-expectancy of hours but the person lives on for days or even weeks. This “failure-to-die” causes immense distress to families as they second-guess the medical care and their part in the medical decision-making. We should avoid absolutes and allow for uncertainty of outcomes, talking of, “Never say never but I’d be surprised if…” and “Hoping for the best while planning for the worst.”

One way to decrease prognostic uncertainty is to defer prognosticating, or explain to patients and families that there will be routine review of an initial prognosis at least 24-48 hours after stroke onset and periodically thereafter. Early clinical changes and follow-up imaging may help guide decision-making and communication with families. In our experience, showing and explaining imaging to family members is helpful. Seeing a massive stroke with impending herniation on imaging enables understanding in family members and eases angst over end-of-life decisions.

Another challenge facing stroke physicians is that many lack training in palliative care. Effectively communicating prognosis and end-of-life decision-making to patients and their families at times requires advanced evidence-based skills.^5,6 Communication skills training improves physician competency in this area.^7,8 For trainees, exposure to palliative care may be useful, especially where few stroke faculty have the skills to model best practices in communication.

An unaddressed difficulty will be for physicians to identify when specialist palliative care services should be sought. Development of shared care models between primary palliative care providers and interdisciplinary specialty palliative care may lead to objective guidelines.⁹

Despite these challenges, for the sake of our patients and their families, we must commit to improving palliative care in stroke. Further research of palliative care in stroke is needed. To date most palliative research has centered on chronic diseases such as cancer, HIV/AIDS, and heart failure. In contrast, stroke is a sudden event with rapid associated losses that may evoke different qualities of patient and family suffering and grief. Optimal palliative care in stroke may have unique features. The status quo of unaddressed patient and family distress, mismatch between preferences and care delivered, and moral distress for healthcare providers is unacceptable.^10,11 Holloway et al.’s comprehensive recommendations will greatly help all clinicians involved in stroke care.