GENERAL NEUROLOGY
Palliative care after stroke
David Goldemund M.D.
Updated on 25/08/2024, published on 22/08/2024
Updated on 25/08/2024, published on 22/08/2024
- despite advances in acute stroke management, many patients are left with significant deficits, including hemiplegia, cognitive impairment, and aphasia, resulting in a significant reduction in quality of life → Consequences of stroke
- the severity of the stroke, combined with preexisting comorbidities, may lead to discussions about discontinuing aggressive treatment and initiating palliative care
- all patients and families with a stroke that will predictably reduce the quality of life or life expectancy should have access to palliative care services
- it will improve symptom management and support patients and families through the profound changes caused by stroke (AHA/ASA 2014 I/B)
- training in palliative care principles should be part of the neurology curriculum
- palliative care must be distinguished from end-of-life (terminal) care, as they represent distinct concepts in the management of patients with serious illness
Definition
- palliative care is specialized medical care for individuals facing serious illnesses, such as stroke
- it focuses on relieving symptoms, improving the quality of life, and supporting patients and families
- it should be considered when the care goals shift from curative to comfort-focused, particularly when the prognosis is poor or recovery is unlikely (AHA/ASA 2014 I/B)
- palliative care can be provided alongside curative care
Palliative team
- palliative team involves neurologists, palliative care specialists, nurses, social workers, and other specialists
- this team works together to create a plan of care that respects the patient’s values and addresses his and family’s comprehensive needs
Estimating prognosis
- clinicians should obtain a thorough understanding of what aspects of recovery are most important to the patient and family and then frame the subsequent discussion of prognosis in these terms
- validated prognostic models may be useful
- be aware of the inherent uncertainty, limitations, and potential for bias surrounding prognostic estimates in the acute setting
- palliative care teams can offer expertise in managing uncertainty and communicating effectively about outcomes
Differences between palliative care and terminal care
- understanding the nuances between terminal and palliative care is crucial
- referral to hospice should be considered if survival is expected to be ≤6 months and when the patient’s goals are primarily palliative (AHA/ASA 2014 I/B)
| Palliative care | Terminal/end-of-life care |
| can begin at any stage of a serious illness aims to improve quality of life and relieve symptoms often provided alongside curative treatments can be long-term can be provided in various settings, including hospitals and homes |
focuses on patients with a life expectancy of ≤ 6 months aims to provide comfort and dignity in the final stages of life typically involves stopping curative treatments time-limited |
Decision to pursue life-sustaining 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
- DNR (do-not-resuscitate) 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
- patients with a DNR order in place should receive all other appropriate medical and surgical interventions unless otherwise explicitly indicated
- patients with a DNI (do-not-intubate) order in place should receive all other appropriate medical and surgical interventions unless otherwise explicitly indicated
- 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
Indication
A palliative care consultation is reasonable in the following situations:
- management of refractory pain, dyspnea, agitation, or other symptoms, particularly near the end of life
- management of more complex depression, anxiety, grief, and existential distress
- any requests for hastened death
- assistance with goals and methods of treatment, particularly pertaining to options for long-term feeding and methods of ventilation
- assistance with managing the process of palliative extubation
- assistance with addressing cases of near futility and in families who “want everything”
- assistance with conflict resolution, whether it be within families, between staff and families, or among treatment teams
- introduction and transition to hospice care
Timing of palliative care
- palliative care is appropriate for patients at any stage of serious illness and in any care setting
- palliative care should not be delayed until the terminal phase but introduced early when it becomes evident that the patient’s recovery potential is limited
- early integration of palliative care offers several benefits
- helps explain whether symptoms will be permanent or improve over time
- provides support in coping with the challenges of living after a stroke
- helps to understand which aspects of recovery are most important to the patient
- enhances communication between patients, families, and healthcare providers
- assists in making decisions about further care
- serves as a first line of defense against symptoms of pain, discomfort, depression, or anxiety
- patients’ preferences, needs, and values help to guide medical decisions
- sensitively discuss prognosis, post-stroke challenges, and life-sustaining treatment options
- address the pros and cons of various medical interventions (e.g., resuscitation, ventilators, feeding tubes)
Key components of palliative care
- palliative care focuses on relieving symptoms (such as pain, dyspnea, dysphagia, stress, anxiety, etc.)
- effective pain management is crucial but may be challenging in those with cognitive impairments or aphasia
- use observational pain scales designed for non-verbal patients, such as the Pain Assessment in Advanced Dementia (PAINAD) scale
- look for behavioral indicators of pain, including grimacing, restlessness, and changes in interpersonal interactions or vital signs (tachycardia, hypertension)
- use a trial of analgesics if pain is suspected but cannot be confirmed
- medication
- start with acetaminophen as a first-line treatment for mild to moderate pain
- for moderate to severe pain, consider opioids, but be cautious of side effects such as confusion and constipation
- use adjuvant medications like gabapentin or pregabalin for neuropathic pain, which is common post-stroke
- for the treatment of central poststroke pain (CPSP), pharmacological treatment with amitriptyline or lamotrigine is reasonable; venlafaxine and gabapentin may be considered based on their efficacy in other neuropathic pain syndromes
- always start with low doses and titrate slowly, following the “start low, go slow” principle
- non-pharmacological approaches
- regular repositioning and gentle exercises can help prevent pain from immobility
- ensure a calm, comfortable environment
- sensory interventions (gentle massage, music therapy, or aromatherapy)
- cognitive-behavioral techniques
- physical modalities – application of heat or cold when appropriate
- address spasticity, which may contribute to pain
- addressing depression and anxiety, which are common post-stroke emotional issues
- periodically screen for the presence of depression and, if present, treat with antidepressant therapy, especially selective serotonin reuptake inhibitors (AHA/ASA 2014 I/B)
- in stroke patients with emotional lability, the use of antidepressants may be considered if symptoms are troubling or coexist with depression
- in patients with anxiety, antidepressant medications can be useful; benzodiazepines are recommended only for short-term treatment, particularly in patients receiving end-of-life measures
- enhancing communication between patients, families, and healthcare providers
- ask about patient preferences, needs, and values to guide medical decisions
- try to understand which aspects of recovery are most important to the patient
- have effective, sensitive discussions about prognosis and post-stroke challenges
- anticipate, recognize, and help manage grief in patients and families
- revisit discussions to reaffirm or revise goals and treatment preferences
- social care
- enhances communication within the family unit
- offers guidance on practical matters such as financial planning and legal issues
- spiritual care
- addresses the need for meaning, purpose, and value in life
- helps patients find ways to express themselves and their feelings toward others
- supports patients in dealing with unfinished business or repairing broken relationships
- spiritual care can involve
- chaplains or spiritual care coordinators
- psychologists or counselors
- specialist palliative care social workers
- assisting with advance care planning and complex medical decisions, incl. discussions about the goals of care
Examples of communication techniques used in palliative care
- encourage patients and families to talk; acknowledge errors; demonstrate respect; do not force decisions; listen carefully before responding
- bad news discussions may be initiated by sentences like “I am afraid I have some difficult news to share with you,” etc.
- better avoid the use of “I’m sorry”
- express empathy and limits of treatment: “I wish we had better treatments for your condition”
- understand and empathize: “I imagine it feels overwhelming”, “I would probably feel the same way”, “I can’t imagine how difficult this is for you”
- support the family by expressing a willingness to help
The decision to move from curative to palliative care is complex and requires careful consideration of the patient’s overall health, the potential for recovery, and the patient’s and family’s wishes.
