Severe stroke represents a sudden decline in functional status and lifestyle for affected individuals, along with a high risk of immediate and longer-term mortality. Family members are often required to adjust expectations, grieve the loss of former relationships, learn to become caregivers, and engage in early discussions around medical decision-making with little or no preparation (Case: Mrs. J Has a Severe Stroke). Although prognosis is often uncertain and outcomes may not be clear for months or years, decisions around life-sustaining treatment (LST) (eg, intubation, decompressive surgery, feeding tubes, and tracheostomies) must be made in the first hours to weeks poststroke. This mismatch presents a challenge to those asked to act as surrogate decision-makers for their now-incapacitated loved ones, whose treatment preferences may or may not be known. Serial conversations are often required to allow surrogates to process serious news before being asked to make difficult next-step decisions.
Neurologists should not hesitate to involve interdisciplinary team members, including chaplains and social workers to support families, and should also consult specialty palliative care providers when appropriate. Still, the treating neurologist will have the most knowledge of the patient’s prognosis and the risks and benefits of interventions. Therefore, neurologists must be prepared to use primary palliative care skills to lead these discussions.1 We aim to provide neurologists with communication tools to guide these conversations with confidence and empathy, enhancing the therapeutic relationship and improving the experience of surrogates in challenging times.
Exploring Values With Preference-Based Discussions
Shared decision-making is a collaborative process between patients and clinicians that involves creating individualized care plans that integrate clinical expertise, best evidence, and patients’ values and preferences.2 By definition, this process involves eliciting what is important to the patient (Box). Before using the term “meaningful neurologic recovery,” it is imperative to understand how the patient defines meaningful. For example, a librarian who needed a wheelchair to function prestroke may be more accepting of residual limb weakness than would be a marathoner. Understanding the patient’s minimal acceptable outcome (MAO) is of great value to the treating team before considering aggressive interventions.
Because strokes frequently leave patients unable to make complex decisions, preference-based discussions are often held with surrogates. Because stroke is acute and unexpected, patients often have not had explicit discussions with surrogates about their wishes. Advance care planning documents can shed light on general preferences for medical care but are often ambiguous and rarely helpful for specific situations. A clinician’s role is to guide surrogates to provide deeper insight into the patient’s values. This can be done with exploratory questions about the patient’s daily life, role in the family and community, past experiences with illness and disability, and importance placed on quality vs quantity of life.3 Together, the clinician and surrogate can then extrapolate preferences, apply them to the specific situation, and reach decisions (Case: Getting to Know Mrs. J and Box). Although multiple professional societies emphasize a shared decision-making model as best practice, how families look to physicians for help with decision making varies with personal and cultural factors.4
It is critical that surrogates understand they should base decisions on their loved one’s preferences and values (substituted judgment), rather than their own.5 This may have an added benefit of alleviating surrogate’s guilt by emphasizing they are honoring their loved one’s wishes. Gentle reminders to use substituted judgment may be needed throughout the process, with encouragement that there is no “wrong choice” as long as the patient’s preferences are respected.
Discussing Prognostic Uncertainty
Prognostic uncertainty can create discomfort that may lead providers to avoid future-oriented conversations; however evidence suggests surrogate decision-makers appreciate acknowledgment of prognostic uncertainty, and often want prognostic estimates despite uncertainty.6 Surrogates also need this information to make acute decisions and develop a realistic picture of what life may look like if LST is pursued. Acknowledging the inherent anxiety in decision making when prognosis is uncertain, neurologists should assure surrogates they will partner with and support them in a shared decision-making process.7 After eliciting apatient’s MAO, it is useful to give a prognostic estimate in a “best, worst, and most likely case” framework (Table),7 which allows families to make decisions accounting for a range of possible functional outcomes, helping them “hope for the best and prepare for the worst” concretely and realistically. It is crucial to include outcomes defined as meaningful to the patient (eg, ability to live at home or perform self-care) in addition to more concrete neurologic outcomes (eg, recovery of motor function in a limb). After describing possible outcomes, the neurologist can describe LST and time needed for maximum functional recovery. After discussing benefits and burdens of available treatments, neurologists can help surrogates compare anticipated outcomes to the patient’s MAO and ask, “Would your loved one be willing to undergo these treatments for this amount of time for a chance at the most likely outcome described?” Knowing the patient’s MAO allows a neurologist to recommend whether available treatments are likely to meet patient-specific goals (Case: Framing Uncertainty).
If a surrogate believes their loved one would accept some projected outcomes but not others, or if patient preferences or anticipated outcomes are particularly unclear, a time-limited trial (TLT) of LST may be appropriate. At the end of the trial, doctors and surrogates can assess the patient’s progress toward the MAO, and LST may be continued or de-escalated at that time, depending on whether adequate progress is being made.10 A TLT may also help surrogates better grasp benefits vs burdens of treatments and provide time for multiple surrogates to reach consensus if needed.8 It is important to help surrogates identify measurable outcomes and an appropriate time period (often 3-6 months poststroke) for the TLT. Providers should discuss potential stroke complications (eg, sepsis, recurrent stroke, cardiac arrest) that may significantly affect prognostication and require an earlier reassessment of the appropriateness of continued LST. It should be noted that the majority of the TLT will likely occur after hospital discharge, and follow-up with a trusted physician will be instrumental to guide further decisions and facilitate de-escalation if desired.
Making a Recommendation
At the forefront of the modern Western patient-doctor relationship and patient-centered care is respect for patient autonomy. Consequently, clinicians sometimes misinterpret their role in the decision-making process as limited to providing medical information only, with a duty to remain neutral and withhold recommendations.9 This can leave patients and surrogates carrying the decision-making burden alone, without the medical expertise to fathom the implications of their decisions. This emotional burden has a negative long-term impact on at least one-third of surrogates.10
Once patient values and preferences are defined, the clinician’s responsibility is to discuss whether considered interventions will meet their MAO, based on clinical expertise and best evidence, and then make a recommendation (Case: Dr. X Makes a Recommendation and Case: Letting Go). Any recommendation, from aggressive medical care to comfort-focused care, may be appropriate depending on the patient’s known values. Clinicians are not required to offer or provide interventions that may not yield benefit or could cause disproportionate harm, even if requested by surrogates. Clinicians need to acknowledge their own biases and try to prevent these from unduly influencing recommendations. Ideally, a shared decision-making process will result in consensus among providers and surrogates, lifting a portion of the burden from surrogates.
Clinicians can ease decision-making burden of surrogates by eliciting the patient’s MAO, providing a prognostic estimate using the above proposed framework, and making a recommendation based on the likelihood that considered interventions will meet the patient’s MAO and goals. This nuanced process is often best as a series of conversations. Interactions and outcomes will be improved when surrogates and physicians keep a patient’s personhood and values at the center of discussions. Clinicians may even find this shared, personalized approach more meaningful and rewarding.
1. Creutzfeldt CJ, Robinson MT, Holloway RG. Neurologists as primary palliative care providers: communication and practice approaches. Neurol Clin Pract. 2016;6(1):40-48.
2. Grad R, Légaré F, Bell RN, et al. Shared decision making in preventive health care: what it is; what it is not. Can Fam Physician. 2017;63(9):682-684.
3. Serious Illness Conversation Guide. Ariadne Labs: A Joint Center for Health Systems Innovation and Dana-Farber Cancer Institute. Revised April 2017. Accessed June 15, 2020. https://www.ariadnelabs.org/wp-content/uploads/sites/2/2017/05/SI-CG-2017-04-21_FINAL.pdf
4. Isaac M, Creutzfeldt CJ. Severe acute brain injury. In: Creutzfeldt CJ, Kluger BM, Holloway RG, eds. Neuropalliative Care. Springer Nature; 2019:11-24.
5. Opinion 2.1.2 Decisions for adult patients who lack capacity. Code of Medical Ethics. American Medical Association. Published 2016. Accessed June 8, 2020. https://www.ama-assn.org/sites/default/files/media-browser/code-of-medical-ethics-chapter-2.pdf
6. Evans LR, Boyd EA, Malvar G, et al. Surrogate decision-makers’ perspectives on discussing prognosis in the face of uncertainty. Am J Respir Crit Care Med. 2009;179(1):48-53.
7. Holloway RG, Gramling R, Kelly AG. Estimating and communicating prognosis in advanced neurologic disease. Neurology. 2013;80(8):764-772.
8. Holloway RG, Benesch CG, Burgin WS, Zentner JB. Prognosis and decision making in severe stroke. JAMA. 2005;294(6):725-733.
9. Billings JA, Krakauer EL. On patient autonomy and physician responsibility in end-of-life care. Arch Intern Med. 2011;171(9):849-853.
10. Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):336-346.
NMK, JB, and RMD report no disclosures