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Neuropalliative care of stroke

Neuropalliative care of stroke
Literature review current through: May 2024.
This topic last updated: Feb 19, 2024.

INTRODUCTION — Palliative care focuses on improving the quality of life for patients with serious illness. This topic will discuss care as it applies to patients with neurologic conditions, focusing mainly on stroke.

Other aspects of outcome after stroke are reviewed elsewhere. (See "Overview of ischemic stroke prognosis in adults" and "Complications of stroke: An overview".)

PALLIATIVE CARE

Definition — Palliative medicine is a specialty that aims to recognize, prevent, and alleviate suffering and improve quality of life for patients with serious, advanced, and chronic medical conditions [1]. Neuropalliative care is an approach to care that focuses on optimizing symptom management and functional status, addressing goals of care, discussing advance care planning, and engaging in shared decision-making in patients with neurologic conditions throughout the course of their disease [2-5].

Although palliative care is often equated with hospice care, the terms are not interchangeable; palliative care can be provided independent of a patient's prognosis, while hospice care is appropriate if a patient is nearing the end of life. (See "Hospice: Philosophy of care and appropriate utilization in the United States".)

Availability — A significant increase in the availability of palliative care services in the first decades of the 21st century has been observed as indicated by a 7 to 72 percent growth in inpatient palliative care teams in United States hospitals with 50 beds or more from 2001 to 2019 [6,7]. While palliative care in general is increasing in prominence, there have been specific efforts to incorporate palliative care into the management plans for patients with neurologic diseases in inpatient and outpatient settings given the often incurable diagnoses, functional and cognitive decline, and caregiver needs [8-11].

While palliative care is integrated into the health care systems of most high-income countries, access to palliative care is generally limited in low-income countries. (See "Benefits, services, and models of subspecialty palliative care" and "Palliative care and hospice outside of the United States".)

Efficacy — A growing body of evidence is available for the benefit of palliative care in medicine, with evidence of improvement in quality of life, symptom severity, and patient and family satisfaction [12,13] and a reduction of cost [14-16]. Studies have evaluated a broad range of palliative care interventions to support patients with serious illness and their families. However, palliative care for patients with severe stroke and their families, who experience distinct and unmet palliative care needs [17], has been widely ignored.

A systematic review of randomized controlled trials of palliative care interventions for patients with advanced cancer suggested that palliative care interventions were associated with higher patient and caregiver quality of life and lower symptom burden [18]. Using a broad definition of palliative care interventions, this review included a spectrum of palliative care delivery models that ranged from interdisciplinary specialist palliative care to models in which palliative care was delivered by nonpalliative care specialists, and from phone-based educational interventions to in-person clinic visits. A similar review that focused on patients with chronic, non-cancer illness (mostly heart failure), suggested associations of palliative care interventions with reduced acute health care use and modestly reduced symptom burden, but not with quality of life [19].

While these heterogeneous studies justify palliative care as a broad philosophy of care, research is needed that offers specific operational elements of palliative care interventions so that results can be translated into practice [20].

IMPACT OF STROKE

Morbidity and mortality of stroke — Globally, stroke kills over five million people annually and is the leading cause of chronic disability and the second leading cause of dementia [21]. In the United States alone, one person dies of a stroke every four minutes (CDC stroke facts). Patients who survive the initial period still face an all-cause mortality risk of 28 percent at 28 days, 41 percent at one year, and 60 percent at five years, almost quintupling their risk of death compared with the general population [22]. Given the difference in etiology and management, stroke is categorized into ischemic stroke (70 to 80 percent of all strokes), intraparenchymal hemorrhage (10 to 20 percent), and subarachnoid hemorrhage (2 to 5 percent). Because the palliative care issues for patients and their families are similar across the three categories, this topic will discuss them as a group. (See "Stroke: Etiology, classification, and epidemiology".)

Advances in the treatment of acute stroke have led to a reduction in morbidity and mortality; as an example, stroke moved from the third leading cause of death in 2007 to the fifth leading cause since 2013 [21,23]. With baby boomers (ie, people born from 1946 to 1964) reaching the age of highest stroke risk, the absolute numbers for stroke and stroke death were anticipated to double from 2002 to 2032 [17,24]. Clinicians will therefore face an increasing number of survivors, who, along with their family members or caregivers, experience a wide range of physical, psychosocial, and existential suffering such as pain, mood, caregiver strain, and end-of-life care needs. These high rates of morbidity and mortality after stroke emphasize the importance for clinicians to integrate palliative care into both acute and postacute systems of stroke care.

Stroke trajectory — Unlike many other serious illnesses such as cancer, congestive heart failure, or dementia, stroke presents suddenly and unexpectedly, with little or no time for patients or families to prepare, consider their values and treatment preferences, or to build a trusting relationship with their physician (figure 1) [25]. Many patients are unable to participate in treatment decisions early on, and families are tasked to work with clinicians to make treatment decisions based on what they think the patients would say. Most patients who die after stroke do so in the setting of withdrawal of life-sustaining treatment. Those who survive face a prolonged trajectory of improvement as well as increased risk of morbidity and mortality [21]. Therefore, models of palliative care integration and communication skills need to be adapted to this trajectory.

INTEGRATING PALLIATIVE CARE INTO STROKE CARE

Timing and role of palliative care — For patients who have a stroke, palliative care can begin at the time of presentation and can be offered concurrently with acute treatment [17]. The degree of palliative care integration depends upon patient and hospital factors. The role of palliative care may be more significant for patients who experience marked functional or cognitive challenges or for patients confronting dependency on life-prolonging measures such as a mechanical ventilation or enteral feeding.

Unlike the general palliative care population, patients with stroke who are evaluated by palliative care teams are less likely to have capacity to make medical decisions, less likely to experience common symptoms requiring management, and more likely to die in the hospital [26].

Primary and specialist stroke palliative care — In clinical practice, primary palliative care is the care provided by the patient's primary medical team (eg, the stroke team), whereas specialist palliative care is provided by a multidisciplinary team of health care providers who specialize in palliative medicine [27]. In this way, all clinicians who care for patients with serious illness should master a basic set of palliative care skills (table 1). These include:

Identification and basic management of pain and other physical symptoms as well as psychological suffering

Serious illness communication, for example asking a patient about their values and treatment goals and effectively discussing a likely prognosis (see 'Optimizing communication' below)

Care coordination, such as transitions out of the hospital, especially when a time-limited trial is involved

Specialists are asked to join or assist the primary team when they identify refractory pain or complex depression, anxiety, grief, and existential distress or to assist with conflict resolution regarding goals or methods of treatment. Sometimes, specialist assistance may be helpful to help address the use of potentially inappropriate treatment requested by patients, families, or caregivers [28]. In this chapter, we discuss palliative care as an approach to care [29] and focus less on the type of clinicians who provide the care but more on the type of care that patient and family receive. The palliative care approach can be adapted to the skills and resources available in the respective settings and institutions [12-16].

Serious illness conversation triggers — A key step to providing optimal palliative care is to recognize the palliative care needs of patients and their families. Checklists or triggers have been developed to help identify patients or families with the highest needs, improve communication between clinicians and families or caregivers, and to promote timely, targeted management of needs [29,30]. As an example, a change in the patient's health or prognosis can indicate the need for a serious illness conversation. When recognized through use of a checklist or trigger tool, these indicators serve to prompt the neurologic care team to meet with the patient, family, or caregivers and discuss the "status quo," treatment goals, and possible referral to specialty palliative care, depending upon individual needs, resources, or clinician skills. These trigger tools are often based on age, severity of disease, comorbidities, or prognosis and less often focus on the type of need, for example existential distress, caregiver burden, or treatment preferences and health care goals.

Serious illness conversation triggers for neurologic illness have been suggested [31] and include three general and three stroke-specific triggers [32]:

General triggers:

Age 80 years or older and hospitalized

Patient, family, or caregivers ask for the conversation

Affirmative response to the question "Would you be surprised if the patient died within the next year?"

Stroke-specific triggers:

Requiring mechanical ventilation

Predicted major functional and/or cognitive deficits requiring long-term assistance

Requiring long-term artificial nutrition

The key to a timely palliative care approach is to identify the patient's needs or those of their family and to know the local resources to manage them. These resources may include general or primary resources (ie, within the primary team), such as arranging for a family conference or engaging in advance care planning, and specialist resources, including consulting palliative care specialists, social worker, psychologists, etc. (See "Primary palliative care", section on 'Utilizing palliative care subspecialists to improve primary palliative care'.)

Advance care planning — Advance care planning is an ongoing process in which patients, their families or caregivers, and their health care providers reflect on the patient's goals, values, and beliefs; discuss how they should inform current and future medical care; and use this information to accurately document the patients' future health care choices. (See "Advance care planning and advance directives".) The unique illness trajectory after stroke presents a distinct challenge to advance care planning. First, as people consider future disability or cognitive impairment, they may underestimate their own ability to adjust to a new health state [33]. Clinicians should describe this "disability paradox" and allow consideration of the future self's values [34]. Second, stroke survivors are at increased risk for future stroke and dementia and may want to discuss advance directives with their stroke physicians [35]. A question clinicians could ask to start this conversation might be "What do you know about your illness and what to expect?" Identifying a surrogate decision-maker is particularly important for patients with neurologic illness, who may lose the ability to make decisions for themselves. Other examples of facilitating advanced care planning conversations are listed in the table (table 2).

RECOGNIZING AND MANAGING SYMPTOMS — After a stroke, a variety of symptoms occur secondary to the direct consequences of the brain injury and the sequelae of immobility, loss of function, and prognostic uncertainty. Managing symptoms to optimize function is integral to the palliative approach to care [4].

Pain — Pain occurs in approximately 30 percent of patients after a stroke [36]. Common types of pain that occur include headache, central poststroke pain, spasticity-related pain, and musculoskeletal pain [37]. The timing of pain onset varies in the poststroke period.

Headache – Headaches can occur in the acute poststroke time frame and are commonly described as a tension-type headache [38,39]. They can affect between 6 to 44 percent of patients with ischemic stroke, and women and those with posterior circulation or cortical strokes appear to be most affected [40]. Management is similar to tension-type headache and should start with nonpharmacologic interventions by ensuring adequate hydration, sleep, regular meals, and (when possible) exercise. (See "Tension-type headache in adults: Preventive treatment".)

Pharmacologic treatment should always balance the high risk of sedation or confusion with pain relief. Acetaminophen is the treatment of choice. Nonsteroidal antiinflammatory drugs (NSAIDs) such as ibuprofen are effective, though caution is advised given their antiplatelet effect and their interaction with aspirin. If used in the acute setting after ischemic stroke, ibuprofen should be spaced at least four hours from aspirin. In the acute setting after intracerebral hemorrhage, we tend to avoid NSAIDs. Opioids should also be avoided if at all possible.

Prophylactic headache treatment is usually not necessary in the acute setting and may take too long to take effect. When necessary, we use gabapentin in the acute setting, since it can be titrated relatively quickly to effect (starting with 100 mg by mouth three times daily, increasing by 100 mg per dose every day until reaching 600 mg three times daily). In the chronic setting, the management of headache is similar to that in the general population. (See "Tension-type headache in adults: Preventive treatment" and "Preventive treatment of episodic migraine in adults" and "Chronic daily headache: Associated syndromes, evaluation, and management".)

Central poststroke pain – Central poststroke pain is related to damage to the somatosensory tract and it can present as allodynia, hyperalgesia, or dysesthesia [38,41]. It primarily occurs between the first month and the first year after the stroke [41]. Tricyclic antidepressants, selective serotonin reuptake inhibitors (SSRIs), selective noradrenergic receptor inhibitors, and antiseizure medications can be prescribed for pain management [38,39,41]. However, the benefit of these therapies for central poststroke pain is not established, and the available evidence from randomized trials is low quality [42]. (See "Central neuropathic facial pain", section on 'Central poststroke pain'.)

Among the antiseizure medications, our first choices are calcium channel modulators such as gabapentin or pregabalin. With some evidence of effectiveness for pregabalin [43,44], gabapentin is often first-line due to its relative affordability. In ambulatory patients, in which side effects of dizziness and imbalance are more consequential, we will start with oral gabapentin 100 to 300 mg at night and then add 100 mg dose every three days with a goal of 400 to 600 mg three times daily (maximum 900 mg three times daily). Sodium channel blockers such as carbamazepine or lamotrigine are considered second-line treatments [45]. Tricyclic antidepressants are often first-line, but this is probably due to historic reasons, with evidence that amitriptyline was effective in an trial of 15 patients from 1989 [46]. SSRIs have not been well-studied for central poststroke pain but are commonly used given their benefit for other neuropathic pain syndromes as well as a potential beneficial effect on mood [47]. We will often start with fluoxetine or duloxetine. However, treatment with fluoxetine after acute stroke has been associated with an increased risk of bone fractures, falls, epileptic seizures, and hyponatremia [48-50]. All SSRIs inhibit one or more hepatic cytochrome P450 enzymes, raising concern that fluoxetine may reduce the efficacy of clopidogrel [51,52]. Specific interactions of fluoxetine with other medications may be determined using the drug interactions program provided within UpToDate. (See "Selective serotonin reuptake inhibitors: Pharmacology, administration, and side effects", section on 'Drug-drug interactions'.)

Spasticity – Spasticity is a common etiology of poststroke-related pain, and although it can occur within a week of the stroke, it typically occurs in the chronic stroke period [36,39]. This type of pain can be treated with medications such as tizanidine, baclofen, and botulinum toxin, although the evidence is limited [38,39]. Treatment is similar to spasticity related to multiple sclerosis. (See "Symptom management of multiple sclerosis in adults", section on 'Spasticity'.)

Hemiplegic shoulder pain – Hemiplegic shoulder pain is associated with risk factors such as upper extremity weakness, right hemispheric lesions, sensory impairment, spasticity, and stroke severity [38,39]. It tends to begin later in the course of disease, in the subacute and chronic poststroke periods, and can be related to glenohumeral subluxation [36,38,39]. Physical therapy with passive range of motion exercises and prevention of shoulder injury are important in the immediate poststroke period to reduce the likelihood of developing hemiplegic shoulder pain [39]. Treatment can include shoulder slings, shoulder straps, and other means to stabilize the shoulder as well as medications to reduce inflammation such as NSAIDs (eg, ibuprofen) and other analgesics (eg, acetaminophen) [38,39,53]. If there is increased tone, antispasmodics (baclofen and tizanidine) and botulinum toxin injections could also be helpful [39,54].

The starting dose for baclofen is 5 mg three times a day with gradual titration to the desired effect, with a maximum daily dose of 80 mg in divided doses. Tizanidine can be started at 2 mg every eight hours, with a maximum dose of 36 mg a day in divided doses. Diazepam is another option for managing spasticity; the starting dose is 2 mg three times a day, and it can be titrated to 10 mg four times a day. If the treatment of poststroke pain is complicated by sedation, beginning with a lower antispasmodic dose or a trial dose at night may be helpful. Decreasing tone can increase the patient's comfort, but this goal should be balanced with the needs of therapy, as significantly reducing tone can be counterproductive for optimizing strength and function. Adverse effects of antispasticity medications include drowsiness, confusion, and dizziness.

Dysphagia — Dysphagia is a common symptom after stroke, with more than 50 percent of patients affected in the acute setting [55]. The incidence of dysphagia increases with more comprehensive evaluation with instrumental testing versus screening and clinical assessments [56]. Approximately 50 percent of patients with dysphagia recover within two weeks, and about 15 percent of patients have persistent dysphagia at one month [57,58]. Factors associated with persistent dysphagia at the time of hospital discharge include bihemispheric infarcts, National Institutes of Health Stroke Scale score ≥12, intubation, significant dysarthria, age >52 years, and aspiration [59,60].

Dysphagia is associated with a number of complications poststroke, including impaired rehabilitation, prolonged hospitalization, aspiration pneumonia, malnutrition, and increased mortality [57]. Persistent dysphagia typically requires the surgical placement of a percutaneous endoscopic gastrostomy (PEG) for prolonged artificial nutrition and hydration. A great variation exists in feeding tube placement practices across the United States both in terms of the rate of PEG tube placement across different hospitals and in terms of timing [57,61]. A large randomized study revealed no significant benefit to early PEG tube placement versus nasogastric tube (NGT) placement and a borderline increase in risk of death or poor outcome with PEG placement [57,62]. Therefore, time-limited trials of enteral feeding with NGT may be reasonable based on the goals of care, although this may not be feasible due to rehabilitation facility requirements [63].

Depression — Poststroke depression is reviewed here briefly, and discussed in greater detail separately. (See "Complications of stroke: An overview", section on 'Depression'.)

Depression affects approximately 31 percent of stroke patients within five years of their stroke [64]. A prior history or family history of depression, stroke severity, an impaired ability to complete activities of daily living, poor social support, and cognitive impairment are risk factors for poststroke depression [64]. Poststroke depression can negatively impact stroke recovery and one's ability to complete their activities of daily living, and it can increase the risk of mortality at one year poststroke [65]. Screening for poststroke depression is generally recommended, provided there are resources to manage those who screen positive. Evidence regarding pharmacologic and nonpharmacologic treatment options specific to poststroke depression is limited, and the recommended approach is the same as for patients without stroke [66,67]. Antidepressants may be useful, and behavioral interventions may confer some benefit to these patients [67].

Anxiety — Anxiety impacts approximately 25 percent of patients after stroke, and the most common subtype of anxiety is phobic disorder in this patient population [68]. There is also a fear of having a recurrent stroke, which can induce anxiety. In a prospective cohort of 175 patients with a stroke or TIA, younger patients and those with a history of anxiety or depression were at higher risk of developing poststroke anxiety at three months, and participants with anxiety had a poorer quality of life [68]. Similar to the treatment of poststroke depression, there is limited evidence regarding treatment modalities for poststroke anxiety [69]. Although unproven, paroxetine or buspirone are options for poststroke anxiety; paroxetine is started at 20 mg once daily and buspirone at 7.5 mg twice a day. Patients should be monitored for adverse effects such as dizziness, somnolence, and gastrointestinal symptoms. Other potential adverse effects of paroxetine include asthenia, tremor, headache, insomnia, diaphoresis, decreased libido, abnormal ejaculation, and erectile dysfunction.

Behavioral and/or cognitive psychological therapy are options for nonpharmacologic therapy or for adjunctive therapy.

PROVIDING SUPPORT TO THE TEAM

Caregiver support — Palliative care goes beyond the typical patient-clinician dyad and acknowledges the need for caregiver support. Stroke not only affects patients but also their families, friends, caregivers, and social environment. When stroke impairs the patient's ability to speak or care for themselves, family members and friends step in to give the patient a voice and help care for them. In the acute stages of severe stroke, family members or caregivers often act as surrogate decision-makers and need to make treatment decisions around the use of life-sustaining treatment on behalf of their loved one [25]. Most families are unprepared for these value-laden decisions and have reported significant distress from having to make decisions under time pressure, including decisions that may result in death [70]. Family members of stroke survivors often assume the caregiving role for their loved one, with typically a significant change in social roles. As they provide basic medical care, help with activities of daily living, as well as emotional support, family caregivers face their own set of palliative care needs, ranging from physical to spiritual, social, emotional, and psychological [71]. Caregiver burden has been reported to be higher for caregivers of patients with stroke compared with those with cancer or dementia [72], and for caregivers of patients with cognitive/emotional deficits compared with those with motor/functional deficits [73]. The emotional health of the caregiver seems to be closely related to the emotional health of the patient [74].

Clinicians need to acknowledge the role that caregivers play in the patient's health and assess the needs of caregivers at every clinic visit. Primary palliative care skills include basic caregiver support across the three domains of needs [75]:

Physical, emotional, and psychological

Information and decision support

Instrumental support (eg, home care and respite care)

Clinicians can engage caregivers in disease and treatment education, emphasize the importance of caregiver self-care, and refer them to support groups or counseling services. Increasingly, stroke centers will offer peer support groups, and the American Heart/American Stroke Association has a good set of online resources at For Family Caregivers.

Staff support — A survey of neurologists in the United States revealed that at least 60 percent of respondents experienced at least one symptom of burnout, which highlights the challenges of continuously caring for patients with serious, chronic, and advanced medical conditions [76]. This study emphasizes the need to increase awareness of the emotional states of medical providers and particularly those who are caring for patients who have acute and unexpected conditions, some of which lead to devastating outcomes.

Consideration should be given to implementing wellness activities for stroke teams, and this can include discussions about wellness, reflections on aspects of care that went well, surveys to determine the needs of the team members, setting expectations that are realistic and that respect boundaries, debriefing sessions to discuss emotions, and trial interventions based on the team members' needs and experiences [77].

OPTIMIZING COMMUNICATION — Communication skills and shared decision-making are important aspects of care decisions involving clinicians and patients. Communication challenges that are relatively specific to stroke or other severe acute brain injuries include clarifying goals of care in the acute setting, prognostic uncertainty, surrogate decision-making, and advance care planning in the postacute setting after stroke survival.

Improving communication skills — The trajectory of stroke (figure 1) illustrates the challenges for clinicians to build a trusting relationship with the patient and/or family after stroke. The first encounter is in a crisis, when the patient is clinically at their worst and the family member is in shock. Advanced communication skills are needed to simultaneously deliver serious news, build trust, and discuss the patient's goals of care. Several web-based tools (eg, VitalTalk, Center to Advance Palliative Care) are available to assist in improving communication skills for discussing serious news. Basic skills of delivering serious news are reviewed in detail separately. (See "Discussing serious news".)

Shared decision-making

Principles of shared decision-making – Shared decision-making is founded in patient autonomy and is often conceptualized on a spectrum of the physician's role, ranging from paternalism on one side, in which the physician directs decisions, to full autonomy on the other side, in which the physician may provide medical information without a recommendation, and the decision is made by the patient/family [78]. As clinicians engage in shared decision-making, it is important to consider their place along that spectrum that is altered by the trifecta of clinical acuity, prognostic certainty, and patient role preferences [79]. A highly acute decision such as a thrombectomy in a case of an acute ischemic stroke due to a large vessel occlusion may require the clinician to be more directive and err on the side of expediting urgent life-saving treatment; a deeper conversation can be deferred until after the urgent treatment is completed. When the expected outcome of a treatment is highly certain, a physician should be willing to offer a recommendation and relieve the family decision-maker of some of the burden of decision-making. This can be when there is certain benefit of a treatment, for example a ventricular drain for acute hydrocephalus, or when there is a certain absence of benefit, for example cardiac resuscitation for cerebral herniation syndrome. Finally, physicians should be able to adapt their shared decision-making style to the individual preferences of the patient or family, explicitly ask them what role they want to play, and adjust this role as needed over time.

Acuity of decisions – Treatment decisions after stroke include very early decisions that need to be made within minutes, such as thrombolysis and thrombectomy, or within 24 to 48 hours for emergent neurosurgical procedures such as decompressive hemicraniectomy. Less urgent but still early decisions, usually during the initial hospitalization, include interventions such as gastrostomy for prolonged artificial nutrition and hydration or tracheostomy for respiratory support. Late decisions that usually occur after a patient has left the hospital may include re-evaluation of previous decisions, such as the continued use of artificial nutrition and hydration, and advance care planning.

In the acute setting, time-limited trials of interventions can provide a way to give patients a chance to recover when prognosis and patient values are uncertain, to build dialogue and relationship between families and clinicians, and to promote consensus in decision-making [27,80]. Because time-limited trials after stroke tend to carry over from the acute to the postacute setting, it is important that clinicians provide a clear follow-up strategy.

Role of surrogate decision-makers – Most patients with an acute stroke severe enough to require such preference-sensitive decisions will be unable to participate in goals of care conversations, leaving this task to their family members or surrogate decision-makers who need to make a substituted judgment of what they think the patient might have said in this situation. The clinician's role is to support the surrogate in being the patient's voice without feeling the burden of making the decision for the patient.

Clarifying goals of care in the acute setting — Whereas learning a patient's values is not usually considered an urgent priority in most other serious illnesses, it is one of the first tasks for a stroke clinician, and typically needs to be an ongoing process during the initial hospitalization given the rapid clinical changes and treatments available. Outcomes after severe stroke can range from death to independence with a wide range of conditions in between, some of which may be considered worse than death [81,82]. Therefore, decisions around life-sustaining treatments should aim to balance potential outcomes with the patient's individual goals in order to avoid overuse or underuse of life-sustaining treatments [83]. Few patients who present with stroke have documented their treatment preferences, and often those are not applicable to the stroke setting [84].

Sensitive exploration of a patient's values requires asking them or, if they are unable, their surrogate decision-maker, about who they are, what brings them joy, and what is important to them. In the acute and often chaotic setting of the emergency department or intensive care unit, clinicians often feel short on time. A key skill is to ask pertinent questions that can help manage the short amount of time. "So that I can take the best possible care of you, could you tell me a little about [patient/you] as a person?" Goals of care are not the same as code status and can, when determined sensitively, both help ensure that the overall treatment and outcome are aligned with the patient's values and help the patient and family feel heard and cared for.

However, clinicians also need to know how to interpret the answer so as not to risk overvaluing a patient's previous values and underestimating the patient's chance of accommodating to a future health state [34].

Communicating prognostic uncertainty — Two types of uncertainty complicate prognosis communication after stroke. The first involves the patient's chance of recovering their physical and cognitive function over a certain period of time, and the second involves the patient's chance of accommodating to a new health state. Prognostic uncertainty after stroke requires humility, sensitive and transparent communication, and patience. To manage this uncertainty, clinicians can use ways to reduce the uncertainty and ways to acknowledge and help the uncertainty. Time-limited trials of a life-sustaining intervention can help reduce uncertainty and require a clear follow-up strategy.

Prognostic models typically include initial stroke severity, patient's age, stroke location, and patient comorbidities, among other characteristics. Model-based predictions should not be used as the primary source to guide treatment decisions, including end of life decisions after stroke [85], but can be helpful to minimize the effect of bias or "noise" from one individual [86]. Our typical approach is to obtain a second opinion, for example from an experienced colleague or multidisciplinary team of experts. While no model can be entirely accurate, they can help the clinician bracket prognostic estimates with ranges of possible outcomes, for example by describing a best-case/worst-case scenario [87,88]. Stroke prognostic scores are reviewed separately for ischemic stroke and intracerebral hemorrhage. (See "Overview of ischemic stroke prognosis in adults", section on 'Global prognostic scales' and "Spontaneous intracerebral hemorrhage: Acute treatment and prognosis", section on 'Clinical prediction scores'.)

Most surrogates appreciate receiving prognostic information early in the course of critical illness, even if the prognosis is uncertain [89]. Transparency about the uncertainty can help the clinician prevent premature closure and can also function as a foundation to a commitment by the clinician to the family ("I don't know for sure and I will be with you on this path towards more certainty and will be truthful with you as my assessment changes"). Providing anticipatory guidance can help patients and families manage expectations and set the stage for future conversations.

Readdressing goals of care in the postacute setting — Stroke survivors continue to experience high rates of morbidity of mortality. Registry data suggest that the cumulative one-year mortality after stroke is 41 percent, and among those who die within the first year, most die in an institution, either after a rehospitalization or in a skilled nursing facility [22,90]. One in four patients admitted with acute stroke has a history of a previous stroke, and the risk for dementia is twice as high in stroke survivors compared with people without a stroke [21,91].

These numbers suggest an important task for stroke providers: to integrate goals-of-care discussions and advance care planning (see 'Advance care planning' above) into poststroke clinic visits. This includes following up on a time-limited trial that may have been initiated during the acute hospitalization (eg, "I would like to talk about some treatments that were started in the hospital and how you look back on those decisions now"), as well as planning for the future (eg, "With your stroke you became sick so suddenly that we couldn't talk to you about the care you might have wanted. Maybe we could talk about that now"). As with similar conversations about goals of care, clinicians need to expect emotion (eg, "I know this is difficult to think about") and show commitment (eg, "This is so I can take better care of you over the long run").

END-OF-LIFE CARE — Discussions regarding goals of care after stroke are influenced by stroke severity, options for intervention, patient and family preferences regarding treatment intensity, and clinician practice [38]. For some patients, these conversations will focus on transitioning to end-of-life care. In the stroke patient population, a decision to withdraw or withhold life-prolonging treatments commonly occurs prior to death [8,17].

Hospice provides medical care and support services for patients at the end of life and emphasizes symptom control and quality of life rather than prolonging life.

Eligibility for hospice – In the United States, patients with stroke have the same eligibility criteria as patients with other serious illness despite the difference in illness trajectory. Patients are eligible for hospice care if they have a prognosis of six months or less, which is predicted by a score of ≤40 percent on the Karnofsky Performance Status scale (table 3) or the Palliative Performance Scale, and have the inability to maintain hydration and caloric intake with one of the following: weight loss >10 percent in the past six months or >7.5 percent in the past three months, serum albumin <2.5 gm/dL; current history of pulmonary aspiration, not responsive to speech-language pathology intervention; sequential calorie counts documenting inadequate caloric/fluid intake; dysphagia severe enough to prevent the patient from continuing food and fluids necessary to sustain life, in a patient who does not receive artificial nutrition and hydration (table 4) [92].

In some instances, there may be uncertainty regarding whether a patient qualifies for hospice services. While the guidelines offer a structured approach to hospice enrollment, providers may also consider other medical comorbidities and patient factors (table 5). Further research is needed to refine hospice guidelines for stroke patients.

Imaging features that support hospice eligibility – Certain diagnostic neuroimaging findings support a poor prognosis and hospice eligibility after stroke [92].

For nontraumatic hemorrhagic stroke, these include large volume hemorrhage (infratentorial ≥20 ml, supratentorial ≥50 ml); ventricular extension of hemorrhage; surface area of hemorrhage involvement ≥30 percent of cerebrum; midline shift ≥1.5 cm; or obstructive hydrocephalus in patient who declines, or is not a candidate for, ventriculoperitoneal shunt [92].

For ischemic stroke, these include large anterior infarcts with both cortical and subcortical involvement; large bihemispheric infarcts; basilar artery occlusion; or bilateral vertebral artery occlusion [92].

Medical complications that support hospice eligibility – Poststroke complications including aspiration pneumonia, refractory stage 3 to 4 decubitus ulcers, sepsis, pyelonephritis, and fevers despite antibiotic therapy can also contribute to hospice eligibility criteria [92].

Factors predictive of hospice utilization – In studies analyzing registry and administrative databases, factors predictive of hospice enrollment among patients with stroke included stroke severity, older age, female sex, a diagnosis of dementia, and hospitalization of more than three days [93,94].

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Stroke in adults" and "Society guideline links: Palliative care".)

SUMMARY AND RECOMMENDATIONS

Definition and goals – Palliative medicine is a specialty that aims to recognize, prevent, and alleviate suffering and improve quality of life for patients with serious, advanced, and chronic medical conditions. Neuropalliative care focuses on optimizing symptom management and functional status, addressing goals of care, discussing advance care planning, and engaging in shared decision-making in patients with neurologic conditions throughout the course of their disease. (See 'Palliative care' above.)

Impact of stroke – Despite advances in the treatment of acute stroke, morbidity and mortality remain high, and the aging population portends an increase in the absolute numbers of patients with stroke for the near future. Unlike many other serious illnesses, stroke presents suddenly and unexpectedly, with little or no time for patients or families to prepare, consider their values and treatment preferences, or to build a trusting relationship with their physician (figure 1). (See 'Impact of stroke' above.)

Integrating palliative care – For patients who have a stroke, palliative care can begin at the time of presentation, and can be offered concurrently with acute treatment. Primary palliative care is provided by the patient's primary medical team (eg, the stroke team), while specialist palliative care is provided by a multidisciplinary team of health care providers who specialize in palliative medicine. Ideally, all clinicians who care for patients with serious illness should master a basic set of palliative care skills, including identification and basic management of pain, other physical symptoms, and psychological suffering. They should ask a patient about their values and treatment goals, and effectively discuss the likely prognosis (table 1). Recognizing the palliative care needs of patients and their families is essential to the process. (See 'Integrating palliative care into stroke care' above.)

Symptom management – Stroke may cause a variety of symptoms secondary to the direct consequences of brain injury and the sequelae of immobility, loss of function, and prognostic uncertainty. Managing symptoms to optimize function is integral to the palliative approach to care. Pain, dysphagia, depression, and anxiety are common symptoms requiring evaluation and treatment. (See 'Recognizing and managing symptoms' above.)

Caregiver support – Palliative care goes beyond the typical patient-clinician dyad and acknowledges the need for caregiver support. Stroke not only affects patients but also their families, friends, caregivers, and social environment. The well-being of the clinical staff should also be considered. (See 'Providing support to the team' above.)

Communication – Communication skills and shared decision-making are important aspects of care decisions involving clinicians and patients. Communication challenges that are relatively specific to stroke or other severe acute brain injuries include clarifying goals of care in the acute setting, prognostic uncertainty, surrogate decision-making, and advance care planning in the postacute setting after stroke survival. (See 'Optimizing communication' above.)

Prognostic uncertainty after stroke – This aspect of stroke care requires humility, sensitive and transparent communication, and patience. Time-limited trials of a life-sustaining intervention can help reduce uncertainty and require a clear follow-up strategy. (See 'Communicating prognostic uncertainty' above.)

End-of-life care – Hospice provides medical care and support services for patients at the end of life and emphasizes symptom control and quality of life rather than prolonging life. (See 'End-of-life care' above.)

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Topic 131658 Version 7.0

References

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