Case Study 1.1
A 72-year-old woman with several risk factors for stroke including atrial fibrillation on coumadin, hypertension, and diabetes mellitus type II presented with sudden onset of left hemiparesis, left homonymous hemianopia, and right gaze preference with a National Institutes of Health Stroke Scale (NIHSS) of 15. Her head computed tomography (CT) did not show any acute signs of stroke or hemorrhage. Her CT angiogram showed a right middle cerebral artery (MCA) cut-off. Her International Normalized Ratio (INR) was 1.6 and she received intravenous thrombolysis. She was taken emergently for thrombectomy and despite a successful recanalization, her exam did not improve. Post-thrombetcomy head CT showed hemorrhagic transformation of her stroke. She was deemed to be at a high risk of developing malignant cerebral edema.
The Neurocritical Care, Neurosurgery, and Stroke team members discussed the options for managing her malignant cerebral edema and presented the evidence and consensus regarding hemicraniectomy to the family. The patient’s husband and four adult children were present at this meeting. While her husband was regarded as the primary decision maker, it was well established during this meeting that all five family members would be participating in key management decisions and the patient’s husband would be the one signing any consent forms. When the medical and surgical options for treatment of malignant cerebral edema were discussed with the family, the neurocritical care attending made it clear that the stroke could leave the patient debilitated with profound deficits, and while surgery would be a life-saving option it would not be a quality of life-preserving measure. She also acknowledged that while a lot had happened in the past few hours, it was imperative to give the family information about these options and outcomes since the patient hadn’t developed malignant edema yet but was likely to do so over the next few hours. Sharing the evidence and the consensus from the different teams was meant to help the family think about these options, and to allow them to weigh against the wishes and values of their loved one. She asked the family to think about what was the least possible quality of life that would make their loved one happy. After a couple of hours, the family shared that the patient would have wanted every possible chance to see her grandchildren even if she was bed bound. The patient was taken for a hemicraniectomy. She required a tracheostomy, a percutaneous gastrostomy (PEG) tube, and placement in a long-term acute care hospital (LTACH). All of these decisions upheld the principles of shared decision making (SDM) with the patient’s family.
What Is Shared Decision Making?
Shared decision making (SDM) is a collaborative process that allows patients, or their surrogates, and clinicians to make healthcare decisions together, taking into account the best scientific evidence available, as well as the patient’s values, goals, and preferences. This definition of SDM proposed by the Informed Medical Decisions Foundation [1] was endorsed by the American College of Critical Care Medicine (ACCM) and the American Thoracic Society (ATS) (Figure 1.1). Informed medical decision making may be used synonymously with SDM.[Reference McNutt2] Critically ill patients may be too unstable or otherwise incapacitated (e.g., due to intubation, sedation), and may not be able to speak for themselves. In such situations, advance directives from the patient or conversations that they may have had with their families regarding preferences for specific medical conditions or anticipated prognosis can help guide SDM. Families of such critically ill patients play a key role in medical decision making by sharing what they know about the patient’s values, goals and wishes, while the medical team shares medical updates, information about prognosis and possible treatment options. Thus, with substituted judgment, medical teams are able to uphold the principles of patient-centered care and SDM in critical care, and particularly in neurocritical care.[Reference Cai, Robinson and Muehlschlegel3,Reference Phillips and Wendler4]
Figure 1.1 What medical decisions need to be made? What pros, cons, and uncertainties need to be weighed? Who makes medical decisions based on three different models?
*PCP = Primary Care Physician
In this chapter, we discuss principles of SDM and how it can be applied in the neurocritical care setting, along with some strategies to overcome barriers.
Historical Perspective
Shared decision making was first introduced in 1982 by the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.[Reference Lin and Fagerlin5]
In 2010, federal healthcare reform in the United States included SDM. Since then, SDM has received increasing attention by healthcare providers and policy makers exploring opportunities to incorporate SDM into the standard of care. In October 2011, the National Academy for State Health Policy (NASHP) convened a meeting of state and federal officials, SDM experts, and consumer, provider, and purchaser representatives to discuss opportunities and challenges for implementation of SDM at the state level, and how these lessons from state experience could be applied to federal policies.[Reference Shafir and Rosenthal6] SDM has been included into federal rules for Accountable Care Organizations (ACOs). Countries like the United Kingdom have partnered with physician and patient champions to disseminate SDM decision aids to ensure successful implementation of SDM in health policy.[Reference Légaré and Witteman7]
Why Is SDM Important?
SDM helps improve clinical care and patient safety by encouraging the development and dissemination of the best possible evidence regarding risks and benefits of different management strategies in ways that patients can understand, and increases patient involvement in decision making. SDM interventions not only help in increasing active patient participation in informed decision making, but also help in setting realistic expectations, improving agreement between different stakeholders, and improving compliance with treatments as well as satisfaction with health outcomes.[Reference Kon, Davidson, Morrison, Danis and White8] SDM also has the potential to improve the health of populations and individual patients while helping reduce overall healthcare costs.[Reference Frosch, Moulton and Wexler9] SDM along with decision aids have shown promising results for reducing unwarranted variations in care, as well as improving patient satisfaction.[Reference Shafir and Rosenthal6]
In an intensive care unit (ICU) setting, interventions such as feeding tube placement, tracheostomy, and initiation of renal replacement therapy tend to be important transitional aspects of a patient’s care. While patients and families may not need to be involved in decision making about electrolyte replacement or antibiotic use, they almost always need to be involved in decision making about these important transitional aspects of care.[Reference Turnbull, Sahetya and Needham10] As new discoveries are made or practice changing evidence becomes available, SDM also helps in translating this new research into clinical practice.[Reference Shah, Mullan and Breslin11]
Models of SDM
Several models of SDM have been described that take patient preferences into account when more than one reasonable option is available. While these different models have not been studied specifically in the neurocritical care setting, they could all be reasonably adapted to facilitate SDM for neurocritical care. Examples of such models include Elwyn et al.’s model,[Reference Elwyn, Frosch and Thomson12] a three-step model to introduce choices with justification for each, describe options, and help patients explore preferences and make decisions. Another example is an expanded SDM model by Stacy et al. [Reference Stacy, Légaré and Lewis13], which includes the family, surrogate decision makers, and interprofessional team members in SDM.
The process of SDM involves the following steps, regardless of the SDM model used:[Reference Lin and Fagerlin5]
Define and explain the problem.
Define roles and desire for involvement.
Present options.
Discuss pros and cons.
Share patient values and preferences.
Discuss patient ability and self-efficacy.
Offer knowledge and communication.
Check and clarify understanding.
Make or explicitly defer a decision.
Arrange a follow-up.
Come to a mutual agreement.
The Role of Family Meetings
Conducting family meetings with the above process in mind can help align the proposed options and outcomes with a patient’s goals, values, and wishes. It is important to establish a partnership with surrogates early in the course of a critically ill patient’s care.
The American College of Critical Care Medicine ((ACCM) recommends that family meetings with the multiprofessional ICU team should start within the first 24–48 hours of admission, and be scheduled at regular intervals and as needed.[Reference Davidson, Powers and Hedayat14] Patients, surrogates, or family members can be invited to participate in rounds to build trust, improve understanding, and help establish rapport. This partnership can then be leveraged for making key medical decisions.[Reference Davidson, Aslakson and Long15] A proactive multidisciplinary approach can help prevent and reduce conflict. Protocolized family meetings at 72 hours are associated with higher satisfaction for families of critically ill patients.[Reference Piscitello, Parham, Huber, Siegler and Parker16]
Identifying the Right Surrogate
While patients may have multiple family members who may wish to be involved in decision making, from a legal standpoint, different US states have provided guidance on what the hierarchy for surrogates should be for participation in decision making. Some states, such as New York and Massachusetts, allow for two-physician consent for life-saving procedures if no surrogates are identifiable despite reasonable attempts. In some situations, a state-appointed guardian may be needed. About 16% of critically ill patients may have neither decision-making capacity nor a surrogate.[Reference White, Braddock, Bereknyei and Curtis28] Even when advance care planning (ACP) documentation is available, it needs to be put into the context of the acute neurological injury and anticipated prognosis.
Roles of Physicians in SDM
There are several aspects of critical care that will not benefit from patient or family input.
Therapies and practices sometimes provide no benefit or even cause disproportionate harm to certain populations of patients; thus, physicians should not offer interventions if they are convinced they would cause harm.
In situations where the prognosis is uncertain, that uncertainty should be shared clearly with surrogates. Prognosis in different patient-centered domains, such as physical, cognitive, and behavioral, should be emphasized whenever possible. Studies from different critical care settings show that preferences for participation in SDM vary depending on personal, familial, and cultural backgrounds. It is important to state the role and preference for what role surrogate decision makers may want to play. Surrogate decision makers may confuse their own interests or preferences with those of the patient. Surrogates should be asked to share any prior conversations regarding known wishes, and if no such conversations have occurred previously, they should be encouraged to make substituted judgments based on what they think the patient would say if they could speak for themselves. If that is not possible, the surrogates should work closely with the care team to help make decisions in the patient’s best interests based on what they can best estimate would be what the patient would state if they were able (substituted judgment).
Role of Decision Aids in SDM
Decision aids are tools that help in sharing evidence-based information with patients and surrogates. Only a few decision aids have been studied in the neurocritical care setting. The International Patient Decision Aids Standards (IPDAS) Collaboration defines decision aids as tools that present treatment options in a balanced and evidence-based manner.[Reference Butler, Ratner, McCreedy, Shippee and Kane17]
It is also important to learn the different ways to communicate risk: (1) presenting absolute risk instead of relative risk; (2) highlighting incremental risk associated with treatment distinctly as compared to baseline risks; and (3) using pictographs to communicate risk and benefit if possible. Decision aids differ in important ways from other decision tools, should meet formal standards for framing the presentation of medical information to patients, and should be developed in line with the principles of SDM.[Reference Austin, Mohottige, Sudore, Smith and Hanson18]
Decision aids have been designed to achieve different goals, for example to improve knowledge about clinical issues and to discuss risks or benefits of different alternatives to treatments.[Reference Shafir and Rosenthal6] Randomized controlled trials (RCTs) have shown that decision aids help improve the quality and efficiency of decision making and decrease conflict.[Reference Austin, Mohottige, Sudore, Smith and Hanson18–Reference Krones, Budilivschi and Karzig20]
Different formats for decision aids such videos [Reference Plaisance, Witteman and LeBlanc21] printed [Reference Hanson, Carey and Caprio22] and online materials have been [Reference Austin, Mohottige, Sudore, Smith and Hanson18] studied in RCTs. For ACP in patients with dementia, three RCTs [Reference Stirling, Leggett and Lloyd19,Reference Hanson, Carey and Caprio22,Reference Volandes, Ferguson and Davis23] have shown that video-based decision aids improved understanding and increased patient satisfaction with their choices.
Literacy-adjusted decision aids for explaining ACP have been found to be more effective in helping patients complete a written advance directive.[Reference Lin and Fagerlin5] Decisional conflict can be reduced with decision aids. A high-quality study by Hanson et al. found that a decision-making tool on feeding options in patients with advanced dementia in nursing homes led to significant decreases in decisional conflict.[Reference Hanson, Carey and Caprio22]
These trials on decision aids have not measured the impact on clinical outcomes.[Reference Austin, Mohottige, Sudore, Smith and Hanson18] While decision aids can improve knowledge, it is not clear that this translates into improved outcomes. Future research should focus on randomized controlled trials of decision aids and tools designed specifically for neurocritical care patients, and include outcomes beyond improvement in knowledge, such as whether care was consistent with preferences of the patient, as well as satisfaction with clinical care.[Reference Muehlschlegel, Shutter, Col and Goldberg24,Reference Muehlschlegel, Hwang and Flahive25]
Barriers to SDM in Critical Care
Shared decision making should be leveraged throughout the continuum of care for any critically ill patient, not just at key decision points. However, SDM can be challenging for various reasons, including the need to make time-sensitive decisions that may impact the ongoing life-saving measures, uncertainty about prognosis, and not knowing or misinterpreting the patient’s a priori wishes given the sudden onset of an acute brain injury. Patients may have capacity for making one type of decision but may not be able to make other types of decisions depending on the timing of the injury and patient’s clinical status. For example, a patient with a right MCA stroke may be able to understand that he has a stroke and is at risk of developing cerebral edema. This patient may be able to participate in decision making about a life-saving surgery such as hemicraniectomy. If this patient’s clinical course is later complicated by new onset status epilepticus, they may no longer be able to participate in the decision making regarding the placement of a tracheostomy tube or feeding tube. The dynamic course of any acute brain injury may further complicate the ability to engage critically ill patients in SDM. Many critically ill patients are unable to make decisions for themselves due to fluctuating levels of consciousness, underlying neurological diseases, sedation, analgesia, toxic metabolic encephalopathy, and hemodynamic instability, among other reasons. SDM requires a substantial investment of time and effort from ICU teams, which may not always be possible in busy ICU settings.
Another area that may contribute to difficulties in decision making includes the perceived differences in prognosis between healthcare providers and families/surrogates. Education about SDM, upholding cultural and religious beliefs, is needed to ensure that healthcare providers understand the value system of patients better while guiding families in making appropriate decisions. Physician–surrogate discordance about prognosis can occur more than half the time in critically ill patients.[Reference White, Engelberg, Wenrich, Lo and Curtis26] Such discordance is usually related to both misunderstandings by surrogates and differences in belief about the patient’s prognosis.[Reference White, Ernecoff and Buddadhumaruk27] Discordance in expected roles in SDM for surrogates can lead not only to miscommunication but also to anxiety and depression. However, clinicians rarely check for family understanding of the information, or elicit from the family members their preferred roles in decision making.[Reference White, Braddock, Bereknyei and Curtis28]
There are several key issues in implementing SDM. There is a lack of dedicated training to understand and implement SDM in critically ill patients. Decisional conflict can arise from a lack of advance care planning, misinterpretation of patient’s stated preferences, or misinterpretation of values and goals if these were not previously stated explicitly. Patients and surrogates may have different preferences for how much they want to be involved in the decision-making process. They may also differ in how much they rely on input from their care providers to make healthcare decisions. For example, older patients tend to rely more on physician guidance compared to younger patients; more educated patients prefer to be equal partners in making healthcare decisions compared to less educated patients.[Reference Austin, Mohottige, Sudore, Smith and Hanson18,Reference Levinson, Kao, Kuby and Thisted29] Patients facing unfamiliar or uncertain situations may want to rely more on physicians or family members to help guide their preferences, both for participation in SDM as well as treatment decisions. Another issue may be a lack of availability of decision aids or validated decision tools in a language that the patient can understand. Patients and surrogates may experience difficulty in understanding numerical information and may prefer qualitative data.[Reference Lin and Fagerlin5]
These barriers can be overcome with a multipronged approach. Engaging a multidisciplinary team in regular family meetings, establishing rapport with the surrogates early in the course of a critically ill patient, ideally within 24–48 hours of an ICU admission, clearly identifying and delineating roles in SDM, and, similarly, verbalizing the goals of treatment and expected prognosis, as well as acknowledging uncertainties can help overcome some of these barriers to SDM. Including education about SDM in medical school and training curricula can help physicians, nurses, and advanced practice providers (APPs) learn more about the key principles of SDM, how to apply those to their care settings, understand the gaps in literature, and become more familiar with regional health policies regarding SDM.
Participation in SDM may be limited by health literacy. Educated families may not participate as much as more educated families. The extent to which families want to participate in SDM is also variable. Approximately 15–30% of families preferred to play an active role in decision making for critically ill patients.[Reference Levinson, Kao, Kuby and Thisted29,Reference Hauke, Reiter-theil, Hoster, Hiddemann and Winkler30] For others, SDM provides an opportunity to honor the patient by ensuring that the treatment plan is consistent with the patient’s values, even if those values are different from those of the family members. In a study conducted in French ICUs, Pochard et al. reported that the strongest predictor of post-traumatic stress in surrogate decision makers was when they reported receiving inadequate information from the physician.[Reference Pochard, Azoulay and Chevret31] They also noted that active participation in decisions was associated with more post-traumatic stress symptoms.[Reference Pochard, Azoulay and Chevret31] This variability in preferences suggests that explicit discussion of roles in decision making may be a crucial step in the process of achieving appropriate family involvement in decisions.[Reference Hajizadeh, Uhler, Herman and Lester32]
SDM in Neurocritical Care
Acknowledging Uncertainties in Neuroprognostication
Despite the progress in neurocritical care, there are still significant gaps in neuroprognostication for common neurocritical care diseases like subarachnoid hemorrhage (SAH), intracerebral hemorrhage (ICH), acute ischemic stroke, and traumatic brain injury ((TBI). This is further challenged by therapeutic nihilism in neurological emergencies,[Reference Hemphill, Newman, Zhao and Johnston33] where a nihilistic attitude could contribute to worse outcomes than what empiric evidence from retrospective or prospective cohorts may suggest. For instance, it is well known that in-hospital mortality after ICH is significantly influenced by the rate at which treating hospitals use do-not-resuscitate (DNR) orders, even after adjusting for case mix. This was thought to be not solely due to an individual patient’s DNR order, but perhaps due to changes in the overall care once a patient was made DNR.[Reference Hemphill, Newman, Zhao and Johnston33] How we communicate the best evidence available for neuroprognostication while acknowledging the uncertainty in prognostication, in order to give patients a chance of meaningful recovery, is perhaps one of the most important aspects of SDM in neurocritical care. Quantifying what “recovery” means in different domains, including consciousness, physical functioning, cognitive and behavioral outcomes, as well as reintegration into life roles, such as the ability to return to work, can help all team members and surrogates better understand whether or not those outcomes might be in line with a patient’s goals, values, and wishes.[Reference Lazaridis34] Communicating prognosis while a patient is actively herniating or has impending herniation may become even more challenging when decisions about time-sensitive life-saving interventions need to be made without having certainty in what a patient’s quality of life may be if they survive.
Surrogates often play an important role in medical decisions in neurocritical care for patients with severe acute brain injuries who cannot speak for themselves. It is important to determine patient preferences, understand goals, values, and wishes, and provide estimates of prognosis with the best possible evidence to guide decision making. Patient preferences can be determined by: (1) existing advance care documentation, (2) surrogate decision makers, (3) defining roles for surrogates and physicians, and (4) conducting effective and timely family meetings, based on studies of ICU families in crises.[Reference Cai, Robinson and Muehlschlegel3,Reference Lazaridis35] The Control Preference Scale may help in understanding patient preferences regarding healthcare decision making. This scale includes questions regarding how patients prefer making final treatment decisions, whether they prefer making these decisions based on their doctor’s opinion, whether they would like their doctor to share the decision-making responsibility, or whether their doctor would make the final decision after considering their opinion.[Reference Lin and Fagerlin5]
How to Implement SDM in Neurocritical Care
Determining Capacity for Decision Making
Capacity for decision making can be determined by a qualified medical team member; the elements for assessing such capacity include but are not limited to determining how much the patient understands about their disease process, whether they understand the consequences of opting for or against a particular treatment recommendation, or whether they understand the uncertainties in prognostication. However, it must be kept in mind that this is not an absolute determination. Capacity for decision making can vary depending on a patient’s clinical course or the type of decision. Patients may have the capacity for one type of decision but not for another (as described above in the section Barriers to SDM in Critical Care).[Reference Kon, Davidson, Morrison, Danis and White8] Using communication aids for nonverbal patients, such writing or communication boards [Reference Shah, Mullan and Breslin11] or computer interfaces,[Reference Stacy, Légaré and Lewis13] can also help them participate more effectively in decision making.
Advanced Care Planning Documentation
Only a third of American adults have an advance care directive in place.[Reference Muehlschlegel, Shutter, Col and Goldberg24] In a survey conducted by AARP (formerly the American Association of Retired Persons), while most people prefer to die at home, about 25% have not communicated their preferences to their families.[Reference Guengerich36] Studies have shown that prior documentation about advance care planning can help reduce stress for surrogates in medical decision making. There are several different types of advance care documents, such as Physician Orders for Life-Sustaining Therapies (POLST), Medical Orders for Life-Sustaining Therapies (MOLST), healthcare proxy forms, and written advance directives.
Key Issues with ACP Documents
These documents can sometimes have very little detail or may even lack any discussion about preferences [Reference Muehlschlegel, Hwang and Flahive25] regarding specific treatments or procedures such as a PEG, tracheostomy tube, or renal replacement therapies, or the kind of quality of life a patient may consider acceptable.[Reference White, Ernecoff and Buddadhumaruk27] Given the variabilities that exist in these documents, with the exception of POLST forms,[Reference Muehlschlegel, Shutter, Col and Goldberg24] they are not legally binding.
Approach to SDM in Neurocritical Care
In a review about SDM in neurocritical care, the following approach was suggested:[Reference Cai, Robinson and Muehlschlegel3]
Acknowledge uncertainty in prognosis.
Agree on a time-limited trial of critical care to prevent premature withdrawal of life-sustaining therapy.
If disagreement between surrogates and medical team members, offer a second opinion.
Palliative care and ethics consultation may be beneficial in helping resolve conflict.
Family satisfaction with SDM in neurocritical care settings can be measured using the family satisfaction in the ICU (FS-ICU) questionnaire. In a study of 134 patients or surrogates completing this tool, researchers found that parents of patients in neurocritical care units have higher short-term satisfaction with SDM compared to other surrogates. In the ICU, about 20% surrogates or patients reported inconsistent caregiver–patient communication in the first 48 hours that made decision making difficult.[Reference Hwang, Yagoda and Perrey37]
SDM in Different Disease States in Neurocritical Care
SDM in TBI
In a qualitative study involving 20 adult TBI patients the authors found that participating in healthcare decision making helped patients regain their sense of autonomy.[Reference Knox, Douglas and Bigby38] While it is important to maximize patients’ participation in the decision-making process, this may not always be possible given the severity of the underlying TBI.
In a small qualitative study of SDM in severe TBI aiming to understand how surrogates decided to continue or withdraw life-sustaining therapy, 8/10 reported that they would make the same decision again. Surrogates used input from different sources to help guide treatment decisions, and described the need for support from a trauma advanced practice nurse or palliative care team.[Reference Long, Clark and Cook39] In a recent study, Muehlschelgel et al. described a novel goals-of-care decision aid for surrogates of patients critically ill with TBI. This mixed methods study with qualitative interviews showed excellent usability, acceptability, and early feasibility in the neurocritical care environment. This methodology could potentially be used for developing other decision aids in neurology to promote SDM.[Reference White, Ernecoff and Buddadhumaruk27] There is a lot of variability in predicting outcomes, and ongoing research can help harmonize how we prognosticate.[Reference Lazaridis40] Although an unlimited endeavor for sustaining life seems unrealistic, treatment-limiting decisions should not deprive patients of a chance to achieve an outcome they would have considered acceptable.[Reference Van Dijck, Bartels and Lavrijsen41]
In severe TBI patients who develop life-threatening intractable intracranial hypertension, interventions with high morbidity such as surgical decompression or pharmacological coma have to be considered against a backdrop of uncertain outcomes, including prolonged states of disordered consciousness and severe disability. The clinical evidence available to guide shared decision making is limited in such situations.[Reference Lazaridis34] There are no decision aids that could assist in rationally navigating available options, describing the nature and range of outcomes to surrogates, and incorporating patients’ values into goals of care.[Reference White, Engelberg, Wenrich, Lo and Curtis26]
SDM in Stroke (Including Ischemic and Hemorrhagic Stroke)
A commonly studied example of SDM in ischemic stroke care has been secondary stroke prevention in patients with atrial fibrillation.[Reference Kunneman, Branda and Hargraves42] Another area where several aspects of SDM have been studied is palliative care. Palliative care needs of serious or life-threatening stroke patients are enormous, including complex decision making, aligning treatment with goals, and symptom control. The care of stroke patients can become very compartmentalized, potentially leading to fragmentation as different key stake holders get involved during different phases of care and family-centered care are ultimately determined by the quality of interactions between patients, family members, and clinicians.
The following excerpt from the “Approaches to Overcome Challenges with Decision Making in Stroke: Recommendations from the American Heart Association (AHA) guideline statement on Palliative Care in Stroke” [Reference Holloway, Arnold and Creutzfeldt43] provides some key recommendations for SDM in stroke patients
1. Providers should recognize that surrogate decision makers use many other sources of information in addition to the doctor’s expertise in understanding their loved one’s prognosis (Class I; Level of Evidence B).
2. Providers should recognize that making surrogate decisions has a lasting negative emotional impact on a sizeable minority of surrogates, who should be provided access to bereavement services (Class I; Level of Evidence B).
3. Providers should be knowledgeable and respectful of diverse cultural and religious preferences when establishing goals of care and refer to social workers and chaplains when appropriate (Class I; Level of Evidence B).
4. It might be useful for providers to practice self-awareness strategies (prognostic time out, self-reflection) of one’s own biases and emotional state to minimize errors in prognostic estimates and goal setting recommendations (Class IIb; Level of Evidence B).
5. It might be reasonable for providers to recognize the existence of a possible self-fulfilling prophecy (i.e., a prediction that might directly or indirectly cause itself to become true) when prognosticating and making end-of-life decisions in patients with stroke (Class IIb; Level of Evidence B).
6. It might be reasonable for providers to be mindful of and to educate patients and surrogate decision makers about the possible cognitive biases (affective forecasting errors, focusing effects, and optimism bias) that might exist when discussing treatment options and establishing goals of care (Class IIb; Level of Evidence C).
7. Providers might consider the use of time-limited treatment trials with a well-defined outcome to better understand the prognosis or to allow additional time to optimize additional aspects of decision making (Class IIb; Level of Evidence C).
SDM in Spinal Cord Injuries and Neuromuscular Disorders
For patients who can speak for themselves or participate in decision making about life-sustaining therapies, such as patients with acute spinal cord injury or patients with neuromuscular emergencies such as myasthenic crisis or Guillain–Barré syndrome (GBS), they should be engaged early in the process for key decision points regarding tracheostomy and permanent feeding tube placement and transition of care.
SDM for Patients with Neurodegenerative Disorders
For patients with neurodegenerative disorders, multidisciplinary clinic teams typically follow these patients in outpatient settings as well, for example, a specialized clinic for patients with amyotrophic lateral sclerosis (ALS). Outpatient settings present important opportunities to discuss what an acceptable quality of life would be in the event of worsening or new deficits and what values should be kept in mind when instituting life-sustaining therapies in the event of critical illness. This will provide patients with the ability to participate in SDM prior to being in extremis. The burden of decision making in such situations will not be hindered by a lack of time or ability of the patient to engage key stakeholders, including family members, in the weeks or months preceding an inevitable deterioration. This will enable the team providing acute care to the patient to honor the patient’s a priori stated values and wishes.
SDM in Cardiac Arrest
A pilot study conducted in two Canadian hospitals including patients and family members using a video-based SDM decision aid for cardiopulmonary resuscitation (CPR) found that a CPR decision video helped improve the knowledge about CPR for patients and family members. Such a video-based approach, along with discussions with the treating physician, may also help reduce decisional conflict and reduce the prevalence of medical orders for CPR in the Canadian hospital setting.[Reference You, Jayaraman, Swinton, Jiang and Heyland44]
For patients with preexisting disorders, chronic conditions, or underlying cancer, discussions about code status and their wishes regarding life-sustaining therapies in the event of cardiac arrest should be discussed prior to hospitalization in a controlled outpatient setting as much as possible. This allows the teams that know the patient best over a period of time to weigh appropriate treatment options and expected trajectories of recovery to guide patients and their families in the SDM process. When code status is not discussed in a timely fashion with the patient or their families in these situations, it may create unnecessary distress.
Education about SDM
Teaching trainees about SDM and how to conduct family meetings can help address gaps in how families are involved in this process on the frontlines. Advances in medicine help us now prolong life in ways not possible a few years ago, utilizing scoring systems to estimate prognosis in different domains. For example, while the Hunt and Hess score, first reported in literature in 1968 [Reference Hunt and Hess45] and has stood the test of time for predicting mortality after SAH, it must be acknowledged that over the past two decades the outcomes for “poor grade” SAH patients have improved, with a third of these patients having good functional outcomes with aggressive care.[Reference de Oliveira Manoel, Goffi and Marotta46,Reference Naval, Chang and Caserta47] It is important to incorporate prognostic estimates from more recent studies while guiding families through SDM.
Conclusion
Shared decision making is a very important aspect of patient-centered care. More research is needed to improve our understanding of prognostication in neurocritical care and incorporate this improved understanding in the implementation of SDM. Similarly, studies that evaluate the effectiveness of different decision aids for neurocritical care patients can help incorporate the most effective decision aids for patients.
