Erika J. Sigman, MD, Jennifer C. Sarrett, PhD, Elizabeth M. Sivertsen, MBE, CCRN, HEC-C, Gillian E. Hue, PhD, Tommy T. Thomas, MD, PhD
A 72-year-old man with Parkinson’s disease was admitted to the intensive care unit (ICU) after a fall. He suffered a high cervical spinal cord injury which required emergent decompression and laminectomy. As he failed to wean from the ventilator and discussion of tracheostomy ensued, we thought, “how could <his future we envisioned> be a good quality of life?” Prior to admission, he had a disability from a progressively worsening neurodegenerative disease and already required help with activities of daily living. Now he would be quadriplegic.
As the COVID-19 pandemic has increased the visibility of and centered many themes of social justice, the time is ripe for engagement of important but often unacknowledged assumptions that drive decision-making in health care. While the biases inherent to medical decision-making for patients who arrive to critical care with pre-existing disabilities have been explored in an intersectional way—for example, with race, inequality, and disability (1)—less examined are the strategies and ethics associated with outcomes entailing the creation of disabilities. Neurocritical care and its inherent challenges afford the opportunity to assess the core values and priorities around which the medical establishment, institutions, and society generally, are organized. Here, neuroethics, disability studies, and care ethics can provide for the appreciation of important perspectives that might otherwise be overlooked.
Cultural and social perceptions of living with disability are often inaccurate. People who do not live with disability rate the quality of life of people with disabilities much lower than people with disabilities rate it themselves. James Werth talked about how physicians’ [often inaccurate] quality of life ratings may influence decisions on withholding or withdrawing treatment.
These perceptions are equally important for thinking through interventions that cause disability. If there were no stigma or barriers to access for people with disability, then creating a disability would not seem as significant. This perspective aligns with the social model of disability, which states that disability is created at the mismatch of someone's body and mind and the surrounding environment. In other words, if living with a disability wasn't difficult because our society was universally designed and/or accessible, then people would not hesitate so much when considering life-saving interventions that will result in some level of disability.
Relatedly, people will say they would not want a particular life-saving treatment out of fear of experiencing disability (the "I wouldn't want to live like that" statements). However, as people approach different levels of disability due to old age or injury they can change their minds, reasoning that living with a disability is better than not living. This doesn't mean that there isn't an adjustment period that may include depression and mourning of your previous life, but it does mean it is important to regularly readdress goals of care and end of life decisions made by affective forecasting (prediction of one’s future emotions). Feelings change.
This goes for the family as well. The field of care ethics (particularly the work of Eva Kittay) clarifies that caring is not just an altruistic act that only benefits the cared for, but that caregivers themselves who realize the benefit from caring. So, when family members choose to care for a loved one, it is important to respect the benefits they receive from that practice.
Clinical practice and research tend to focus on the extremes of the neurological outcome spectrum– that is, devastating brain injury (brain death, persistent vegetative state, minimally conscious state) versus full restoration of neurological function. Families and patients likewise, focus their hopes on complete recovery to "normal,” or they picture the worst-case scenario and brace against it. In most cases, however, the outcome will fall somewhere within the range between these two extremes, with the patient recovering some function with residual deficits. Thus, it is important to recognize that some extent of "disability" will be a reality for the patient and their support system. This is a scary and uncomfortable idea for most people and their caregivers to entertain, let alone accept. However, it is only through a willingness to conceive of and talk about the likelihood of disability that patients and their families can make fully informed decisions regarding care and prepare for life after injury.
Returning to my patient with Parkinson’s disease, his family had no qualms about the next steps: he would get a tracheostomy. They did not focus on disability but on ability: he could still enjoy the company of his family. He could still feel happiness and joy. He could still know love. It was here that I recognized my disability bias. I assumed his pre-hospital quality of life was not good, given his pre-existing disability. I made a further assumption that his quality of life now would be much worse. Too many assumptions; too many biases. However, the family’s understanding of loving and caring for a person with a disability was all that mattered. In fact, they were the experts—not me.
Critical care is not immune to disability bias. I posit that we may even be more prone to it, perhaps because we often see the pinnacle of disability. Especially in the inpatient environment, we are faced with the acute condition and rarely privy to rehabilitation. The relative onslaught of acute sickness and perceived ensuing disability create a collective bias. Left unchecked, we sabotage ourselves and may lose sight of one of the things we strive to do: help.
- Jasmine Harris, Reckoning with Race and Disability (June 30, 2021). Yale Law Journal Forum, Vol. 130, 2021.
- Lisa I. Iezzoni, Sowmya R. Rao, Julie Ressalam, Dragana Bolcic-Jankovic, Nicole D. Agaronnik, Karen Donelan, Tara Lagu, and Eric G. Campbell. Physicians’ Perceptions of People With Disability and their Heath Care. Health Affairs 2021 40:2, 297-306.
- James L. Werth, Jr. Concerns About Decisions Related to Withholding/ Withdrawing Life-Sustaining Treatment and Futility for Persons With Disabilities. Journal of Disability Policy Studies Vol 16/No 1/2005/PP. 31–37.
- Eva Feder Kittay, Forever Small: The Strange Case of Ashley X. Hypatia vol. 26, no. 3 (Summer, 2011). P610-631.
- Timothy D. Wilson and Daniel T. Gilbert. Affective Forecasting. Advances in Experimental Social Psychology. Vol. 35, p345-411