End-of-Life Care Decision-Making in Stroke

Abstract

Stroke is one of the leading causes of death and long-term disability in the United States. Though advances in interventions have improved patient survival after stroke, prognostication of long-term functional outcomes remains challenging, thereby complicating discussions of treatment goals. Stroke patients who require intensive care unit care often do not have the capacity themselves to participate in decision making processes, a fact that further complicates potential end-of-life care discussions after the immediate post-stroke period. Establishing clear, consistent communication with surrogates through shared decision-making represents best practice, as these surrogates face decisions regarding artificial nutrition, tracheostomy, code status changes, and withdrawal or withholding of life-sustaining therapies. Throughout decision-making, clinicians must be aware of a myriad of factors affecting both provider recommendations and surrogate concerns, such as cognitive biases. While decision aids have the potential to better frame these conversations within intensive care units, aids specific to goals-of-care decisions for stroke patients are currently lacking. This mini review highlights the difficulties in decision-making for critically ill ischemic stroke and intracerebral hemorrhage patients, beginning with limitations in current validated clinical scales and clinician subjectivity in prognostication. We outline processes for identifying patient preferences when possible and make recommendations for collaborating closely with surrogate decision-makers on end-of-life care decisions.

Designing for patient decision-making: Design challenges generated by patients with atrial fibrillation during evaluation of a decision aid prototype

“…Patients also expressed a clear desire for explanations that used simple, non-medical jargon, even when they were familiar with certain medical terms. Consistent and non-medical terms are shown to reduce patient confusion (49). As in prior studies (42,44), patients in our study strongly preferred to discuss their treatment options with their care team rather than view the decision aid independently.…”

A case for preference-sensitive decision timelines to aid shared decision-making in intensive care: need and possible application

“…Time plays a pivotal role in SDM in intensive care. While discussion of patients’ goals and values is important for determining which critical care interventions are suitable, the urgency of patients’ needs in the ICU makes it difficult to engage in SDM; outcomes can often be tied to the timeliness of the intervention, introducing a powerful time pressure ( 14 , 15 ). Indeed, there is significant evidence to suggest that ICU clinician-family conferences about treatment planning often lack important elements of SDM ( 1 , 4 ).…”

“…Time is a relevant factor for ICU decision-making not only in regards to urgency, but also because patients’ preferences tend to evolve ( 18 , 19 ). A key characteristic of shared decision making that needs to be considered is that goal of care discussions are often iterative, changing over time ( 14 , 20 ). Even when impressions of the individual's goals and values remain stable, changing prognosis and the developing nature of the situation mean that treatment should be continuously re-evaluated to ensure it best reflects the patient's preferences ( 21 – 23 ).…”

Frequency of discharge of hospitalized patients with stroke to free-standing hospice facilities—a register study from Germany

“…Numerous studies have emphasized the need for palliative care and the importance of including palliative care expertise in the treatment of stroke patients with severe disease courses (24)(25)(26)(27)(28)(29)(30)(31)(32)(33)(34)(35)(36)(37). Respect for the patient's dignity represents an essential aspect of palliative care here.…”