Entering Tony’s* room elicited mixed emotions. His eager face and wave were a lovely daily greeting, though sadness swiftly followed. Tony’s animated eyes would become vacant, as if we were strangers. Given Tony’s advanced dementia, each hello was our first, no matter how many times we’d met before. For more than 100 days, that corner hospital room was Tony’s whole world.
Tony was no longer making memories, but each day those of us on his team were — frustrated by our powerlessness to advance his care. Inpatient hospitalization of medically stable patients awaiting court-appointed guardianship is common in our experience, and it drives emotional exhaustion for providers.
Tony was hospitalized awaiting a guardian in Massachusetts. Due to his cognitive decline, the team had deemed it unsafe for him to make complex decisions about his medical care; Tony lacked capacity. But Tony had no healthcare proxy (or the required form) to identify a cognition succession plan and he now lacked the insight to appoint a new decision-maker. Tony had no family members to advocate for him, speak to his wishes, or help him safely return to the home he’d lived in alone.
In other states, simply having family members present grants them authority to guide clinicians on patient wishes. In states like Massachusetts, a signed document naming a decision-maker is required. Without this, Tony had no legally viable alternative. We were stuck in the revolving door with him, powerless to end this purgatory, waiting on the courts. So, Tony remained hospitalized, awaiting a legal guardian to become his medical decision-maker; it was his only viable path to hospital discharge.
Stripping Patient Autonomy
The threshold to legally nullify Tony’s autonomy should be high. We regularly struggle with the ethics of balancing autonomy and our oath to do no harm. Conversely, reaching the guardianship threshold in patients with incapacity from medical illness should be achievable without invoking perpetual limbo. While beyond the scope of this discussion, there are significant, additional nuances in the spaces of disability advocacy and psychiatric illness.
We are uncertain how many patients are living Tony’s experience. No centralized, accessible, physician-facing tracking system exists to quantify affected patients. In addition to many different legal approaches to attaining court-appointed guardians, there are at least seven types of state laws across 50 states and D.C. regarding surrogate decision makers. Some states pre-define surrogate decision-maker defaults and their priority order — spousal opinion trumps parental, trumps a sibling’s — while others employ surrogates without a defined priority, and some limit input to life-sustaining therapies.
The paradox of these cases is the apparent concurrent obligation to do too much and too little. Tony could not leave the hospital without a guardian, but absent capacity, he could not decline care. Thus, patients like Tony may be subjected to a default path of maximum medical care because doing less requires informed consent. Assessing the fine line between a lack of insight in the absence of capacity and the autonomous right to make inadvisable medical decisions is difficult.
All of this can feel like whiplash. Our hands often feel tied when maximal medical care is required, and when what is ethically appropriate seems divergent from what is legally permissible. Hospitals often have built-in ethics services to help navigate these challenges. Despite this, situations like Tony’s strain already overtaxed inpatient hospital capacity and are significant sources of distress.
As a frontline clinician, witnessing Tony’s predicament feels bad. Clinicians are infrequently trained to navigate medico-legal overlap and often lack understanding of the associated legal terminology, such as how invoked proxies and guardians differ. This intensifies feelings of helplessness. When these topics are taught (which seems rare), they reflect the local environment rather than the challenging national landscape. With heterogeneous nationwide approaches, learnings may not be transferrable to future practice settings.
Toward a Better System
What can we do about it? One option is better training. If you are an educational leader, augment curricula to include more comprehensive training on medical decision-makers, recognition of cognitive decline, and medical drivers of capacity impairment. These situations present rich opportunities to engage patients and their loved ones in preemptive planning so transitions to legal incapacity are smoother.
Teach your trainees to meet this growing need, recognizing that patients may be exclusively informed by distorted or pop-culture influenced interpretations of this landscape. Help restore patient autonomy by ensuring wishes communicated early drive the care that follows later. Include medical decision-making planning and healthcare proxy form updating in your routine outpatient visits. Join us in making it a profession-wide endeavor to unburden acute care from unknown patient wishes.
Further, if you work in a healthcare system invested in minimizing unnecessary hospitalizations, share stories like Tony’s to incentivize increased outpatient resources to catch patients before they’re stuck in inpatient legal limbo. Advocate for novel strategies, such as dedicated teams to support the guardianship process. These teams mean that people like Tony can get care from experienced clinicians trained to support patients living this onerous reality.
If your local laws have negative consequences for patients, encourage your institution to lobby for solutions and engage in policy discussions. Clinicians often under-appreciate the weight our expertise carries both in the court of public opinion and local government. Together, we can advocate for legislation balancing patient autonomy and incapacity protections.
To be sure, we are not advocating for systematically diminishing patient autonomy via rapid guardianship pursuits. The aging baby boomer population portends strain on the system, particularly in states without surrogate hierarchies. This merits national attention and solutions now. We must ensure a wave of “Tonys” are not stuck in hospitals for 100+ days at a time with no active medical needs. The ripple effect on hospital capacity strain is already significant.
Clinicians, patients, families, and legislators all share the responsibility to enhance these systems and to ensure a clearer path forward for patients like Tony.
*Patient’s name has been changed for privacy.
Gabrielle Kis Bromberg, MD, is an educator and academic hospitalist in Massachusetts General Hospital’s Department of Medicine in Boston. She is a Public Voices fellow with The OpEd Project. Kathleen McFadden, MD, is a clinical ethicist at Massachusetts General Hospital and a fellow in nephrology at Mass General Brigham. She is a graduate of the Public Voices Fellowship with The OpEd Project.
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