Primary Palliative Care:
Recommendations
All patients and families with a stroke that adversely affects daily functioning or will predictably reduce life expectancy or quality of life should have access to and be provided with primary palliative care services appropriate to their needs (Class I; Level of Evidence B).
Stroke systems of care should support a well-coordinated and integrated healthcare environment that enables an informed and involved patient and family and is receptive and responsive to health professionals who can focus on both the disease process and getting to know the patient and family in making decisions that are in line with their preferences (Class I; Level of Evidence C).
Patient and Family-Centered Care:
Recommendations
The stroke community of providers, researchers, educators, payers, and policymakers should promote patient- and family-centered care as its own quality dimension that requires measurement and improvement (Class I; Level of Evidence C).
It is reasonable that the stroke community support interventions, evaluation methods, and resources to encourage providers to focus on improving and refining patient-centered communication skills throughout their careers (Class IIa; Level of Evidence C).
Estimating Prognosis:
Recommendations
Before making a prognostic statement, to the extent possible, clinicians should obtain a thorough understanding of what aspects of recovery (eg, ability to walk, communicate, tolerance for disability) are most important to the individual patient and family and then frame the subsequent discussion of prognosis in these terms (Class I; Level of Evidence C).
Clinicians should be aware of the inherent uncertainty, limitations, and potential for bias surrounding prognostic estimates based on either clinician experience or a prognostic model (risk score) (Class I; Level of Evidence C).
In formulating a stroke prediction of survival and the spectrum of possible outcomes, it can be useful for clinicians to use the best available evidence from the literature, including relevant model-based outcome prediction, in conjunction with their clinical impression based on personal experience (Class IIa; Level of Evidence C).
Rigorously developed and externally validated prognostic models may be useful to inform an estimate of outcome after stroke. However, caution is advised, because the value of model-based estimates has not been established for end-of-life treatment decisions after stroke (Class IIb; Level of Evidence B).
Providers might consider asking for a second opinion about prognosis from an experienced colleague when the range of prognostic uncertainty will impact important treatment decisions (Class IIb; Level of Evidence B).
Explicit disclosure of prognostic uncertainty to patients and family members may be reasonable (Class IIb; Level of Evidence C).
Goal-Setting Process:
Recommendations
Knowledge and use of effective communication techniques is a critical core competency to improve the quality of stroke decision making, as well as patient and family satisfaction and outcomes (Class I; Level of Evidence B).
Knowledge, skills, and competency in running an effective patient and family meeting are important in the management of patients and families with stroke (Class I; Level of Evidence B).
Providers should integrate the best available scientific evidence and the best available evidence about patient values and preferences when making a recommendation about the best course of continued care (Class I; Level of Evidence B).
Because patient preferences change over time, it is important to periodically revisit discussions to reaffirm or revise goals and treatment preferences as needed (Class I; Level of Evidence B).
A structured approach to setting patient goals in patients with stroke care may be reasonable to improve the quality of health care (Class IIb; Level of Evidence C).
Approaches to Overcome Challenges With Decision Making in Stroke:
Recommendations
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).
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).
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).
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).
It might be reasonable for providers to recognize the existence of a possible self-fulfilling prophecy (ie, 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).
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).
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).
If there are conflicts between the patient’s goals and those of the family surrogate, providers may consider implementing strategies to help family members reconcile these differences (Class IIb; Level of Evidence C).
Common Preference-Sensitive Decisions in Stroke:
Recommendations
The decision to pursue life-sustaining therapies or procedures, including CPR, intubation and MV, artificial nutrition, or other invasive procedures, should be based on the overall goals of care, taking into account an individualized estimate of the overall benefit and risk of each treatment and the preferences and values of the patient (Class I; Level of Evidence B).
DNR orders should be based on a patient’s prestroke quality of life and/or the patient’s view of the risks and benefits of CPR in hospitalized patients. In patients with acute ischemic stroke, ICH, or SAH (with no preexisting DNR orders), providers, patients, and families should be cautioned about making early DNR decisions or other limitations in treatment before fully understanding the prognosis, including the potential for recovery (Class I; Level of Evidence B).
Patients with a DNR order in place should receive all other appropriate medical and surgical interventions unless otherwise explicitly indicated (Class I; Level of Evidence C).
Patients with a DNI order in place should receive all other appropriate medical and surgical interventions unless otherwise explicitly indicated (Class IIa; Level of Evidence C). Because CPR usually requires endotracheal intubation, providers should explain why a patient with a DNI order should also consider a simultaneous DNR order and encourage patients (or their surrogates) to execute a DNR order if they have a DNI order in place.
Patients who cannot take solid food and liquids orally should receive nasogastric, nasoduodenal, or PEG tube feedings to maintain hydration and nutrition while undergoing efforts to restore swallowing (Class I; Level of Evidence B).
In selecting between nasogastric and PEG tube routes of feeding in patients who cannot take solid food or liquids orally, it is reasonable to prefer nasogastric tube feeding until 2 to 3 weeks after stroke onset (Class IIa; Level of Evidence B).
To maintain nutrition over the longer term, PEG tube routes of feeding are probably recommended over nasogastric routes of feeding (Class IIa; Level of Evidence B).
Patients who elect to not have ANH based on discussion of the goals of care should be provided with the safest method of natural nutrition and educated about the potential risks and benefits of this approach (Class I; Level of Evidence B).
Decompressive craniectomy for hemispheric infarctions with malignant edema can be effective in reducing mortality and increasing the chances of survival with moderate disability (Class IIa; Level of Evidence B).
Patients with large cerebellar hematomas or massive cerebellar infarctions who develop neurological deterioration, brainstem compression, or obstructive hydrocephalus should undergo emergent decompressive surgery (Class I; Level of Evidence B).
Initial aggressive treatment is recommended for most patients with poor-grade aneurysmal SAH, including ventilatory assistance, vasopressors, ventriculostomy if hydrocephalus is present, and early occlusion of the aneurysm if the patient can be stabilized (Class I; Level of Evidence B).
Pain:
Recommendations
For the treatment of CPSP, pharmacological treatment with amitriptyline or lamotrigine is reasonable, although studies have been small. In older adults, given the side effects associated with amitriptyline, nortriptyline may be a reasonable substitute (Class IIa; Level of Evidence B). Venlafaxine and gabapentin may be considered on the basis of their efficacy in other neuropathic pain syndromes (Class IIb; Level of Evidence C). Treatment with pregabalin, carbamazepine, levetiracetam, or opioids is not effective (Class III; Level of Evidence B).
For patients with poststroke HSP, ice, heat, soft tissue massage, and NSAIDs before or after exercise are reasonable for temporizing pain relief (Class IIa; Level of Evidence C). For patients with persistent HSP, interventions that may be reasonable to perform include intra-articular steroid injections (Class IIb; Level of Evidence C), intramuscular Botox injections in the case of local spasticity (Class IIb; Level of Evidence A), intramuscular electric stimulation (Class IIb; Level of Evidence B), aromatherapy (Class IIb; Level of Evidence B), and slow-stroke back massage (Class IIb; Level of Evidence B).
Nonpain Physical Symptoms:
Recommendations
In patients with primary poststroke fatigue, the usefulness of pharmacological treatment such as modafinil, amantadine, or methylphenidate is not well established (Class IIb; Level of Evidence C).
Poststroke epilepsy should be treated similarly to epilepsy from any other pathogenesis (Class I; Level of Evidence B). Prophylactic administration of anticonvulsants to patients with stroke but who have not had seizures is not recommended (Class III; Level of Evidence C).
Poststroke sexual dysfunction should be acknowledged and periodically screened for, and when present, a referral to necessary resources should be provided (Class I; Level of Evidence C).
Patients with stroke who have excessive daytime somnolence should be referred to an accredited sleep center for an evaluation (Class I; Level of Evidence B).
Psychological Symptoms:
Recommendations
Stroke survivors should be periodically screened and evaluated for the presence of depression and, if present, treated with antidepressant therapy, especially selective serotonin reuptake inhibitors (Class I; Level of Evidence B).
In patients with stroke and generalized anxiety, antidepressant medications can be useful (Class IIa; Level of Evidence B). Benzodiazepines are recommended only for short-term treatment, particularly in patients receiving end-of-life measures, or if symptoms are severe (Class I; Level of Evidence C).
All stroke patients with delirium should be evaluated for reversible causes, such as toxic and metabolic derangements; specific treatment of the causes and behavioral approaches are recommended for management (Class I; Level of Evidence C). Antipsychotic agents may be considered for shortterm treatment (Class IIb; Level of Evidence B), but benzodiazepines are not recommended (Class III; Level of Evidence B).
In stroke patients with emotional lability, the use of antidepressants may be considered if symptoms are troubling or coexist with depression (Class IIb; Level of Evidence B).
Social Suffering:
Recommendations
To prevent caregiver burnout, education about the nature of the stroke, stroke management, and outcome expectations, including the caregiver’s roles in that process, is useful. Caregivers should be provided information on supportive resources (Class I; Level of Evidence C). Caregiver training may be considered (Class IIb; Level of Evidence C).
Providers should try to anticipate, recognize, and help manage grief in patients and families with stroke (Class I; Level of Evidence C).
Providers should develop self-care strategies to monitor for symptoms and to manage burnout while providing care to patients with serious and life- threatening stroke (Class I; Level of Evidence C).
Spiritual Needs:
Recommendations
It is reasonable for providers caring for stroke patients and their families to consider asking their patients about possible spiritual or religious beliefs and to offer referral to a chaplain or spiritual care provider (Class IIa; Level of Evidence C).
Addressing Requests for Hastened Death:
Recommendations
Providers may consider developing a strategy for evaluating and responding to requests for hastened death in patients with stroke, including assessment of suicide and searching for remedies for the underlying problem (Class IIb; Level of Evidence C).
Palliative Treatments and Options at the End of Life:
Recommendations
In patients with severe brain injury, withdrawal of life-sustaining treatments and the institution of intensive comfort measures is an appropriate treatment plan that should be made in collaboration with identified surrogate decision makers. The decision should be individualized, as well as patient and family centered (Class I; Level of Evidence C).
Patients undergoing palliative extubation should be monitored closely for symptoms of discomfort and air hunger and treated appropriately with opioids or benzodiazepines (Class I; Level of Evidence C).
Patients who have intractable physical symptoms (eg, dyspnea and pain) at the end of life should be provided with the minimally effective amount of sedation necessary to relieve refractory symptoms (proportionate palliative sedation). Only rarely will patients require progressive increases in sedation to the point of unconsciousness to achieve this goal (Class I; Level of Evidence B).
Physicians should work closely with representatives from the local organ procurement agency to ensure that the option of organ donation is offered to the family of every patient declared brain dead (Class I; Level of Evidence C).
Role of Palliative Care Specialists:
Recommendation
Although not an exhaustive list, in patients with stroke, a formal palliative care consultation may be reasonable in the following situations: (1) management of refractory pain, dyspnea, agitation, or other symptoms, particularly near the end of life; (2) management of more complex depression, anxiety, grief, and existential distress; (3) any requests for hastened death; (4) assistance with goals and methods of treatment, particularly pertaining to options for long-term feeding and methods of ventilation; (5) assistance with managing the process of palliative extubation; (6) assistance with addressing cases of near futility and in families who “want everything”; (7) assistance with conflict resolution, whether it be within families, between staff and families, or among treatment teams; and (8) introduction and transition to hospice care (Class IIb; Level of Evidence B).
Role of Hospice:
Recommendation
In patients with stroke, referral to hospice should be considered if survival is expected to be ≤6 months and when the patient’s goals are primarily palliative (Class I; Level of Evidence B).
When introducing and discussing hospice with patients and families, providers may consider adopting strategies of communication used in other “bad news” settings and frame the discussions around the benefits and burdens of hospice in achieving the patient’s and family’s overall goals of care (Class IIb; Level of Evidence C).
Education:
Recommendation
The teaching of critical core competencies in palliative and end-of-life care should be integrated within training programs and continuous educational offerings for all professionals who care for patients with stroke and their families (Class I; Level of Evidence C).
Quality Improvement and Research:
Recommendation
Stakeholders with an interest in improving the quality of care and quality of life for patients and families with stroke should develop and implement an aggressive palliative and end-of-life research and quality improvement agenda for this population (Class I; Level of Evidence C).
IKA SYAMSUL HUDA MZ