Background Patients who suffer from an acute stroke often cannot make informed medical decisions and may not have advance directives. The rapidity of its onset often means that the burden of whether to pursue placement in a nursing home and/or life-prolonging measures such as artificial feeding, falls on unprepared loved ones. This Fast Fact reviews clinical factors and tools which could help in prognostication and medical-decision-making for stroke patients.
Accuracy of Clinician Predictions Stroke-related morbidity and mortality improved significantly between 1995 and 2010 (2). Still, prognostication following stroke, even when done by neurologic specialists, remains overly optimistic (1). In general, predictions of a poor outcome (death or severe disability meaning a life of complete dependence) remain relatively reliable (90% accurate in one study), but <1/2 of the predictions for a good outcome were accurate (3). One unanswered and debated clinical question is whether a clinician’s prediction of a poor outcome, especially if made early after the stroke, increase the likelihood that families will withdraw life-sustaining treatment (4,5), and thereby becomes a self-fulfilling prophecy. To our knowledge, there are no studies which have assessed the prognostic accuracy of palliative care clinicians for post-stroke patients.
Early Prognostic Factors Stroke scales and other prognostic factors have been recognized to help predict morbidity and mortality in the first few days of a hospitalization. This data is often utilized to triage and guide immediate post-stroke decisions by neurologists, generalist clinicians, or intensive-care clinicians. The most commonly used and studied is the National Institute of Health Stroke Scale (NIHSS) which is also used as a gold standard (6). The Modified NIHSS (mNIHSS) and the Scandanavian Stroke Scale (SSS) are similarly notable scales which have been shown to have comparable reliability to the NIHSS yet may be easier to use and have better interrater reliability (7,9). Unfortunately, all these scales (including the NIHSS) are similarly optimistic and likely less accurate than clinician gestalt (6-9). While high scores (e.g. an NIHSS score >16) reliably predict poor outcomes at 3 months, low or intermediate scores are of minimal value. Other “early” prognostic factors correlated with poor outcomes include age > 75, female gender, embolic stroke type, hemorrhagic conversion, onset to treatment > 2 hours, ED stay > 8 hours, failure to receive tPA, failure to receive treatment in a dedicated stroke unit, low income (except in universal healthcare systems), and poor social support.
Late Prognostic Factors Often times palliative care specialists are not consulted until several days after an acute stroke at which point these “later” prognostic factors take on greater importance in the decision-making process. Dysphagia that persists 3-7 days after a stroke is associated with worse 1-year functional outcomes (11). Additionally, data suggest that only 10-15% of post-acute stroke patients who require a gastric feeding tube ever make it home. Post-stroke coma lasting > 3 days and an absent response to verbal stimuli at 3 days or later have been associated with poor outcomes as well (15), while active finger extension (at least able to resist gravity) at 7 days is correlated with a more favorable functional outcomes at 6 months (16). For surrogates considering withdrawal of ventilatory support for post-stroke patients and a transition to comfort as the primary goal of care, survival times generally range between 10 minutes to 11 days with a median survival of 7.5 hours (13). Multiple studies suggest the greatest neurologic recovery from a stroke occurs in the first 6 months (13-16).
Palliative Care Considerations For clinicians and surrogates faced with these challenging post-stroke decision-making situations, exploring the patient’s values and identifying things that matter most to the patient should guide treatment choices. The common dilemma surrogates face is taking a small chance for meaningful functional recovery while a patient remains in what is often a completely dependent state for potentially months to years vs deciding to forgo or discontinue nutritional support which will invariably result in death. Evidence suggests that 75% of families prefer a shared or collaborative decision-making model in stroke care vs unilateral physician or surrogate decision making (13). Decision-making tools such as the best case-worst case scenario may be helpful methods to achieve informed and collaborative value-based decisions for both patients and surrogates of post-stroke patients (17). Considering that survey data suggest that clinicians may be prone to disability biases in post-stroke patients (meaning clinicians who are not disabled predict poorer life satisfaction and poorer resiliency than is reported by individuals disabled by the illness) (1,12), in certain circumstances it may be reasonable to give a trial of nasogastric feedings for 3-7 days immediately after a stroke. If there is no significant neurologic recovery at that point and surrogates are still having significant difficult deciding, a 3-6-month time-limited trial of skilled nursing facility placement with artificial nutrition via a more permanent feeding tube could be reasonable if there is adequate follow up to readdress goals of care if quality of life has not improved to an acceptable level.
- Geurts, M., de Kort, F. A. S., de Kort, P. L. M., van Tuijl, J. H., Kappelle, L. J., and van der Worp, H. B. (2017) Predictive accuracy of physicians’ estimates of outcome after severe stroke, PloS one 12, e0184894.
- Appelros, P., Jonsson, F., Asberg, S., Asplund, K., Glader, E. L., Asberg, K. H., Norrving, B., Stegmayr, B., and Terent, A. (2014) Trends in stroke treatment and outcome between 1995 and 2010: observations from Riks-Stroke, the Swedish stroke register, Cerebrovascular diseases (Basel, Switzerland) 37, 22-29.
- Thompson, D. D., Murray, G. D., Dennis, M., Sudlow, C. L., and Whiteley, W. N. (2014) Formal and informal prediction of recurrent stroke and myocardial infarction after stroke: a systematic review and evaluation of clinical prediction models in a new cohort, BMC medicine 12, 58.
- Kelly, A. G., Hoskins, K. D., and Holloway, R. G. (2012) Early stroke mortality, patient preferences, and the withdrawal of care bias, Neurology 79, 941-944.
- Becker, K. J., Baxter, A. B., Cohen, W. A., Bybee, H. M., Tirschwell, D. L., Newell, D. W., Winn, H. R., and Longstreth, W. T., Jr. (2001) Withdrawal of support in intracerebral hemorrhage may lead to self-fulfilling prophecies, Neurology 56, 766-772.
- Inoa, V., Aron, A. W., Staff, I., Fortunato, G., and Sansing, L. H. (2014) Lower NIH stroke scale scores are required to accurately predict a good prognosis in posterior circulation stroke, Cerebrovascular diseases (Basel, Switzerland) 37, 251-255.
- Meyer, B. C., and Lyden, P. D. (2009) The modified National Institutes of Health Stroke Scale: its time has come, International journal of stroke : official journal of the International Stroke Society 4, 267-273.
- Thaller, M., and Mitchell, N. (2017) mSOAR: an effective bedside stroke prognosis tool, Clinical medicine (London, England) 17, 204-208.
- Askim, T., Bernhardt, J., Churilov, L., and Indredavik, B. (2016) The Scandinavian Stroke Scale is equally as good as The National Institutes of Health Stroke Scale in identifying 3-month outcome, Journal of rehabilitation medicine 48, 909-912.
- Quinn, T. J., Singh, S., Lees, K. R., Bath, P. M., and Myint, P. K. (2017) Validating and comparing stroke prognosis scales, Neurology 89, 997-1002.
- Terré, R., and Mearin, F. (2009) Resolution of tracheal aspiration after the acute phase of stroke-related oropharyngeal dysphagia, The American journal of gastroenterology 104, 923.
- El Masry, Y., Mullan, B., and Hackett, M. (2013) Psychosocial experiences and needs of Australian caregivers of people with stroke: prognosis messages, caregiver resilience, and relationships, Topics in stroke rehabilitation 20, 356-368
- Mayer, Stephan A, and Sharon B Kossoff. (1999) Withdrawal of Life Support in the Neurological Intensive Care Unit. Neurology, vol. 52, no. 8, pp. 1602–1609.
- Meisel, Kari, et al. (2017) Survival, Functional Status, and Eating Ability After Percutaneous Endoscopic Gastrostomy Tube Placement for Acute Stroke. Journal of the American Geriatrics Society, vol. 65, no. 8, 27
- Kurent, Jerome E. (2005) Palliative Care in Specific Neurological Diseases. Continuum, vol. 11, no. 6, pp. 33–77.
- Smania, Nicola, et al. (2007) Active Finger Extension. Stroke, vol. 38, no. 3, pp. 1088–1090.
- Stacey D, Bennett CL, Barry MJ, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2011;10:CD001431-CD001431
Version History: First electronically published in February 2019; originally edited by Sean Marks MD.
Conflicts of Interest: NoneAuthor Affiliations: Drexel University College of Medicine, Philadelphia, PA; Montefiore Medical Center, New York, NY.
Fast Facts and Concepts are edited by Sean Marks MD (Medical College of Wisconsin) and associate editor Drew A Rosielle MD (University of Minnesota Medical School), with the generous support of a volunteer peer-review editorial board, and are made available online by the Palliative Care Network of Wisconsin (PCNOW); the authors of each individual Fast Fact are solely responsible for that Fast Fact’s content. The full set of Fast Facts are available at Palliative Care Network of Wisconsin with contact information, and how to reference Fast Facts.
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