Bioethics Forum Essay
Surrogate Decision-Making for Incarcerated Patients: A Pandemic-Inspired Call to Action
As Covid-19 continues to plague the United States, insufficient attention has been paid to the role that incarcerated persons play in the persistence of this pandemic and the work that should be done to limit their infection and suffering. Infection rates among incarcerated populations are approximately five times higher than that of the general population, according to the National Academies of Sciences, Engineering, and Medicine. Because incarcerated persons often interact directly with nonincarcerated persons within the correctional setting, a high rate of infection within the incarcerated population poses serious risk for infection spread in the general population.
Professionals in both medicine and bioethics have called attention to this concern, focusing mostly on strategies to reduce the spread of the virus, including compassionate release for high-risk patients. While this strategy is important, it neglects another aspect of caring for incarcerated persons. Many incarcerated persons who contract Covid-19 are likely to be treated in hospitals outside the correctional environment because their institution lacks adequate medical resources to meet their health care needs. Regrettably, many hospitals that care for incarcerated persons lack a process for ensuring that health care decisions are made by an appropriate surrogate when the incarcerated patient lacks decisional capacity. While most hospitals have policies on surrogate decision-making in place, incarceration creates barriers to locating potential surrogates, and established policies often do not indicate how to overcome these barriers. In addition, incarcerated patients are often unrepresented, or “unbefriended,” and policies on surrogate decision-making for unrepresented patients are less common than policies on surrogate decision-making, and are not always applicable to incarcerated persons. Implicit and explicit biases toward incarcerated persons, along with well-established misinformation about medical decision-making for incarcerated persons are nearly always confounding variables. We believe this area of practice warrants more attention and improvement. A comprehensive approach to addressing the spread of Covid-19 within the incarcerated population should include a strategy that anticipates the potential need for surrogate decision-making.
We know of no national guidelines or practice standards for surrogate decision-making for incarcerated persons. The American Medical Association has no statement or position on how this ought to be addressed, for example. The National Strategy for the Covid-19 Response and Pandemic Preparedness, released by the Biden White House, makes only a single mention of the impact of the pandemic on incarcerated persons, and it pertains to the need for widespread vaccination. Individual states and counties do not address this issue in legislation covering surrogate decision-making. Thus, those who want to foster an ethical approach to decision-making for incarcerated persons are met with a hodgepodge of inconsistent strategies that are often not supported or endorsed by any legislation, institutional policy, or practice standard.
Before the pandemic, we identified this lack of consistency across care environments as a phenomenon that warranted further investigation, based on our experiences as clinical ethicists. Locally, we have piloted our own solutions to this challenge, but professional collaboration led us to investigate whether the challenge might be more pervasive nationally, and whether a broader and more comprehensive solution might be possible.
Our initial findings have largely confirmed our suspicions. We distributed an anonymous online survey to 850 people providing clinical ethics consultation services in hospitals across the country. The survey consisted of 27 questions seeking basic demographic data, ethics consultation service data, and information regarding policies and practices in the care of patients lacking decisional capacity. We received 69 responses, 67 of which self-identified as qualified to complete the survey. Our data indicate that most survey respondents have a policy or a statute that guides medical decision-making for patients without surrogates, but very few such policies or statutes apply to incarcerated persons. Furthermore, our data shows that respondents whose institutions have policies covering decision-making for incarcerated persons are more likely to believe that they have a consistent, ethical approach to this practice in their hospitals.
How might this issue be addressed by the medical and bioethics community? In the long term, it’s clear that state and national standards regarding the surrogate decision-making process for incarcerated persons are needed, for both the hospital setting and within the prison system itself. Given that racial and ethnic minorities are disproportionately represented in the U.S. prison system, failure to address this inadequacy with well thought-out practical protocols further perpetuates the known disparities in care suffered by this group.
In the short term, and in the setting of an ongoing pandemic, we suggest the following strategies. First, leading professional medical associations that have been asked to provide guidance on a decarceration strategy should include guidance about surrogate decision-making in their recommendations. The Covid-19 pandemic has created an opportunity for medicine as a profession to offer a practice standard that might otherwise be very difficult to implement. Second, hospitals that provide care to incarcerated persons should work with their respective bioethics committees, in collaboration with local correctional facilities, to develop local guidance for surrogate decision-making for incarcerated persons. Such guidance can be memorialized as institutional policy later; what is needed in the meantime is at-the-ready practical guidance for hospitals providing care for incarcerated patients. By preparing ourselves to provide ethically appropriate care for these individuals, we demonstrate respect for them as persons, and we promote the value of equitable care that has become so fundamental to an ethically sound approach to providing health care during the pandemic and beyond.
Eli Weber, PhD, is the bioethics director of Kaiser Permanente, San Bernardino County Area. Sharon Gray, MA, BSN, HEC-C, is a senior nurse ethicist at Geisinger Health Systems. Meghan Applewhite, MD, is director of the Alden March Bioethics Institute, Albany College of Medicine, @MeganApple. Thomas Cunningham, PhD, is the bioethics director of Kaiser Permanente, West Los Angeles.