The Unrepresented Patient: Caring for the Vulnerable in Times of Crisis

THE UNREPRESENTED PATIENT:

Caring for the Vulnerable in Times of Crisis

Ruchika Mishra, PhD and Robert Fulbright, JD, MA

2020 was an especially difficult year for hospitals across the country and internation-

ally. A report published by the US Department of Health and Human Services in March 2021 outlined some of the challenges that hospitals have faced during the COVID – 19 pandemic1. Hospitals reported patients delaying or forgoing routine health care that led to worsening of medical conditions. Administrators predicted that widespread delayed care could result in higher hospitalization rates and need for more complex hospital care in the future. Administrators also voiced concern that the pandemic has led to greater mental and behavioral health needs among patients. They anticipated that the needs for mental and behavioral health services at their hospitals would continue to grow and reported concern about meeting these needs. Many hospitals raised concerns that the COVID-19 pandemic has exacerbated existing disparities in access to care and health outcomes. Many of these challenges are expected to have long term implications for health care delivery in acute care settings.

Over the last year, the Bioethics Program at Sutter Health’s CPMC has experienced a substantial increase in ethics consultation requests around decision-making for unrepresented patients in San Francisco. In 2020, unrepresented patient issues formed over 20 % of our ethics consultation requests. This was an 81% increase as compared to 2019. “Unrepresented patients” are individuals who are unable to make their own medical decisions and do not have a surrogate decision-maker. They do not have family, friends, or others who can make medical decisions for them when they cannot. These patients are usually among the most vulnerable members of our society. They live with challenging socio-economic situations and are often the victims of abuse, homelessness, mental health issues, and extreme poverty. During the COVID – 19 pandemic, we have seen a record number of patients arriving at our hospitals who are unidentified. Even when we were able to track down their identity, it was evident that they had no social support, exhibited low health literacy, had little to no regular medical care, and clearly no individual to speak to their wishes and values. When such patients arrive in our hospitals, the health care teams find themselves in a dilemma, facing patients who cannot make medical decisions and with no one other than the hospital team advocating on their behalf. In the absence of adequate representation, such patients are at risk of being either over-treated or undertreated. California law allows for a legal conservator to be appointed to make decisions on behalf of unrepresented patients. However, this process can take several months. During the worst of the pandemic crisis, if a patient’s conservatorship application was accepted by the local public guardian office, the process could take more than nine months to complete. In many such situations, the medical team cannot wait for the appointment of a conservator. When a large number of unrepresented patients present to the hospital in a critically ill state or the patient’s medical needs require a more immediate response, the medical team is put in a quandary. This is especially true if the patient needs treatment that requires informed consent. The medical team may feel they cannot provide these treatments because there is no authorized individual to approve.

Hospitals need to dedicate extra attention when caring for an unrepresented patient. First, the medical team must carefully consider the assessment of the unrepresented patient’s decisional capacity. This assessment greatly impacts the patient’s hospital course. The determination that a patient lacks capacity limits their ability to guide the medical team with respect to treatment decisions. The Attending Physician has the ultimate responsibility to determine if the patient has decision-making capacity. In some cases, the Attending Physician may request opinions from consultants like Psychiatrists and Neuropsychologists to assist in assessment of a patient’s capacity. Second, the hospital must use appropriate resources to make reasonable efforts to locate friends, family, or other interested parties who may function as a surrogate. If no surrogate is found after a diligent search, the patient remains ‘unrepresented’ and the hospital has an obligation to act in the patient’s best interests and ensure that treatment decisions are made through a fair, just, and transparent process.

A few years ago, in response to this organizational ethics issue, our Bioethics Program developed a model decisionmaking policy for unrepresented patients at CPMC. This policy has since been standardized across several Sutter Health hos-

pitals in the Bay Area. Having this policy in place prior to the pandemic was extremely helpful as CPMC saw a surge in unrepresented patient cases in addition to the COVID – 19 spike. Their fragile place in the medical system and in our society was exacerbated by the evolving pandemic crisis. The extreme vulnerability of these patients emphasizes the importance of transparent decision-making processes at an organizational level. Our policy is rooted in the traditional role of hospital ethics committees as an advisory body while recognizing and preserving the primary responsibilities of the Attending Physician. It is important that the ethics consultation include an interdisciplinary discussion regarding the different aspects of the patient’s care that may have a bearing on treatment decision making. However, it should be noted that the ethics consultation service or hospital ethics committee does not serve as a decision-making body. It serves in an advisory role making non-binding recommendations to the Attending Physician, who is ultimately responsible for the unrepresented patient’s medical care. One of the tasks of the consultation service is to collect input from multiple sources; this creates a transparent process that ensures medical decisions for the vulnerable are made after thoughtful reflection and discussion with a collaborative team approach.

Our policy takes into account the various clinical circumstances in which treatment decisions must be made. It addresses three clinical scenarios, examining the need for intervention and the benefits and burdens the treatment presents. First, in the case of an emergency situation, the Attending Physician follows the Emergency Medical Treatment and Active Labor Act (EMTALA). EMTALA is a federal law that requires emergency departments provide medical treatments necessary to stabilize patients. This can be done on the basis of presumed consent. Second, when it comes to routine non-emergent treatments, the Attending Physician may proceed with treatment as long as the benefits clearly outweigh the burdens and the patient is accepting of the medical treatment. If the patient is refusing treatment, the Attending Physician should request an ethics consultation, as per the policy. When a patient begins to refuse treatment, it raises questions about appropriateness of forced treatment, the larger goals of care, and whether the patient would be willing and able to adhere with necessary follow-up treatment, if needed. In such situations, an ethics consultation is valuable in assessing the need for the intervention in the larger context of the patient’s rights, needs, and the other contextual features of the patient’s care.

Third, if decisions need to be made regarding invasive treatments or withdrawal/withholding of life sustaining treatment, the policy requires an ethics consultation. Again, the goal of the policy is to ensure that decision-making for the unrepresented patient is a transparent process. The ethics consultation process includes a thorough review of the patient’s medical record, discussions with the Attending Physician, other consultants, the primary care provider, if available, and any contacts or patient representatives that may provide insight into the patient as a person. The process requires deliberation over the patient’s clinical condition, prognosis, any preferences if known, and ultimately, a thoughtful evaluation and interdisciplinary discussion of the patient’s best interests. It is often helpful to have a community representative on the ethics committee participate in such discussions. Recommendations are made to the Attending Physician regarding the ethical appropriateness of proceeding with invasive treatments or withdrawal/withholding of treatments determined to be medically non-beneficial and therefore, inappropriate. If there are any conflicts or unresolved issues, the hospital’s administrative resources can be utilized for appropriate delivery of care.

Our goal in describing the challenges of the unrepresented patient is to both highlight this issue that will continue to rise and to call attention to the problem only made worse by the pandemic. As more of these patients arrive in hospitals due to delayed medical care or neglect of their needs fueled by socioeconomic reasons and mental health concerns, it is essential that hospitals are prepared to care for the most vulnerable amongst us in a fair, just, and transparent manner. One of the ways to ensure this outcome is for hospitals to have a clear policy that addresses the process for caring for these patients under different medical situations. This not only protects these marginalized patients but also supports the physicians and healthcare teams in doing the right thing and delivering medically appropriate care.

Dr. Mishra is the Director and a bioethicist and Mr. Fulbright a bioethicist at the Sutter Health Program in Medicine and Human Values. For more information on the pioneering program, co-founded by the late Dr. Albert Jonsen and William Andereck, MD, see: Bioethics Services | Sutter Health

References

1. U.S. Department of Health and Human Services Office of

Inspector General. March 2021. Hospitals Reported That the

COVID-19 Pandemic Has Significantly Strained Health Care.