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 internationally. 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 22
SAN FRANCISCO MARIN MEDICINE JULY/AUGUST/SEPTEMBER 2021
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. C a l i fo r n i a l aw a l l o ws 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 hosWWW.SFMMS.ORG
