Abstract
Incarcerated persons (IPs) retain the constitutional right to health care, yet they face unique challenges in accessing palliative care (PC) and designating surrogates, especially when incapacitated. We present two cases of hospitalized IPs with life-limiting illnesses who experienced significant barriers in identifying and engaging surrogates. Both cases underscore the effect of delays in communication with surrogates and restricted end-of-life (EOL) visitation due to correctional policies. These delays limited the delivery of optimal interdisciplinary PC and bereavement support. Despite clear legal guidance under the Tennessee Health Care Decisions Act, misinformation and procedural ambiguity among medical and correctional staff impeded timely and appropriate care. Our findings highlight the need for improved institutional policies and training to ensure IPs receive adequate EOL care. Enhanced awareness of legal frameworks, clearer surrogate identification protocols, and collaboration between health care and correctional systems are essential to upholding the rights and dignity of IPs facing serious illness or death.
Keywords
Introduction
As of 2022, there were over 1.2 million incarcerated persons (IPs) in the United States, according to the Department of Justice (DOJ), of whom nearly 5000 die each year, with many more being hospitalized.1,2 Prisoners have a high prevalence of chronic disease and are at increased risk for infectious diseases, traumatic brain injuries, and mental health disorders when compared to the general population. 3 It is forecasted that by the year 2030, IPs aged 55 or older will comprise greater than one-third of the prison population, growing to 400,000.2,3 This is an increase of nearly 4,400% compared to the prison population in 1980. 2 As the median age of IPs continues to rise, so does the likelihood that IPs will interface with health care systems both inside and outside of the prison system.
Despite having a constitutional right to adequate health care under the 8th amendment as established by the US Supreme Court in Estelle v. Gamble, as well as the right to make their own medical decisions, the incarcerated population has experienced a wide range of challenges in accessing and receiving health care.2,4 IPs are at increased risk of cognitive and functional impairments that may impact decisional capacity; these challenges are amplified in cases in which an IP is incapacitated. 3 Our literature review revealed the following additional challenges that incapacitated IPs may encounter specifically relating to surrogate decision-making and interdisciplinary palliative support for identified surrogates.
To date, the medical literature focusing on the decision-making processes for hospitalized IPs without capacity is scant, and there is limited guidance regarding best practices in caring for this population.3,5 According to the DOJ, “the authority, parameters, and procedures for creating (proxies) are governed by the laws of the state in which the institution operates.” 5 There are, however, very few states that specifically mention incapacitated IPs in their medical decision-maker hierarchies and surrogacy laws. 5 Ideally, decision-making for incapacitated IPs should follow standard state surrogacy laws, irrespective of specific mention. 6 However, even in jurisdictions where the laws regarding surrogacy for hospitalized IPs are clear, one study by Batbold et al. found that medical providers as well as prison personnel often are unaware of such laws, leading to confusion and deviation from standards of care afforded to the non-prison population. 3
Here, we present a series of two cases involving incapacitated IPs in an acute care setting at an academic medical center in Tennessee. These cases highlight the ethical challenges regarding surrogacy and providing optimal interdisciplinary palliative care (PC) to IPs and their surrogates.
Case 1: May 2024
A 40-year-old IP with a history significant for high-grade glioma status-post hemicraniectomy with resection and radiation, stage IV chronic kidney disease, and type I diabetes mellitus, presented with altered mental status, acute hypoxic respiratory failure (AHRF), and multiple venous thromboemboli. Imaging showed a multilobulated brain mass with a 6 mm midline shift. The patient was admitted to the Medical Intensive Care Unit (MICU) and stabilized on hospital day three, regaining decisional capacity. While no surrogate was documented in the electronic medical record, the emergency contact defaulted to a prison number. The emergency department social worker had communicated with the patient’s mother, the identified next-of-kin, and reviewed the prison’s visitation restrictions.
On day eight, the patient was readmitted to the MICU for encephalopathy and worsening AHRF. The mother was contacted after receiving permission from the prison guard on hospital day 10. A family meeting was held and resulted in a change in code status to DNR/DNI and limited visitation—four hours daily.
During days 10 through 14, the patient’s hypoxemia and renal failure worsened. Imaging revealed intralesional hemorrhage, prompting discontinuation of anticoagulation. On day 15, PC was consulted, and care was transitioned to comfort measures with transfer to the Palliative Care Unit (PCU). The PC consultant was informed by the correctional officer that the mother could not be listed in the chart as the emergency contact despite recognition as the surrogate. The patient’s mother wished to be present at the end of life (EOL), but visitation remained restricted by prison policy to four fixed hours daily despite appeals by the PCU provider to correctional officials, including the warden. The team also unsuccessfully requested permission to notify the mother when the patient was imminently dying. The patient was too unstable to transfer to the prison infirmary and died in the PCU on hospital day 30. As the prison health care plan did not offer hospice services, the patient and mother were unable to access hospice care and bereavement support.
Case 2: July 2024
A 78-year-old IP with a history of seminoma and myelodysplastic syndrome (MDS) presented after a fall. Notable findings included altered mentation, a large scalp laceration requiring repair, bilateral pulmonary emboli, and a thoracic vertebral fracture. The patient was admitted for anticoagulation and supportive care.
By day four, the patient developed worsening anemia and received transfusions after discussion with the prison medical director. The patient’s cognitive impairment raised concerns about decisional capacity. The mental baseline was unknown. The patient developed AKI and AHRF. Nephrology did not recommend dialysis. PC was consulted.
On day six, the prison medical director informed the PC consultant that the patient had a living will documenting wishes for nonaggressive care, including DNR/DNI. Care was transitioned to a comfort-focused approach, and the patient was transferred to the PCU. Initially, the PCU team was told that the warden was the decision maker, and all communication with family must go through the correctional officers. The PCU physician consulted the hospital ethicist and Office of General Counsel, who confirmed that IPs are encouraged to complete advance directives upon prison intake. The prison infirmary nurse revealed that the patient had designated their spouse as surrogate. After coordination between hospital and prison attorneys and the PCU team, the spouse was confirmed as the surrogate and was authorized to receive direct medical updates.
The PCU physician updated the spouse on the prognosis and offered visitation. The spouse declined visitation and confirmed the patient’s prior decision to discontinue chemotherapy for MDS. On hospital day seven, the patient became nonresponsive and died on hospital day eight. Though the spouse did not visit, they received communication and bereavement support from the interdisciplinary PC team.
Discussion
IPs retain a constitutional right to receive adequate health care, including the ability to make their own health care decisions and refuse life-sustaining treatments. 3 IPs are entitled to appropriate surrogate decision-making when they lack capacity. Identifying a suitable surrogate can be complex, particularly when one has not been previously designated. These two cases highlight the unique challenges health care providers face when trying to identify and engage appropriate decision makers for IPs who lack capacity, even in situations where one had been named prior to hospitalization. Both cases illustrate the imperative for health care providers and correctional facility staff to be cognizant of the policies and procedures around surrogate decision-making for IPs and the need to ensure IPs receive appropriate and timely PC when diagnosed with severe illnesses.
Case 1 highlights the challenges in identifying an appropriate surrogate and providing EOL care to the patient and their family. It was not until hospital day 8 of 30 that the medical team sought permission from the bedside correctional officer to communicate with the patient’s mother. While the standard of care for hospitalized patients is to identify and have unfettered access to their identified surrogate(s), this was not the case for either of our patients. In case 1, the patient’s mother was not able to engage with the health care team for the first quarter of the admission despite being acknowledged as the surrogate. Visitation was restricted in the patient’s final days. The EOL support and bereavement services the interdisciplinary PC team were able to offer to both the patient and mother were significantly less than what is usually provided to other non-incarcerated patients in the PCU.
Case 2 illustrates the importance of timely identification of surrogates and the challenges in providing PC support to the families of IPs at the EOL, especially when there are delays in identifying an IP’s surrogate. In this instance, the patient’s spouse was identified on hospital day six of eight. Consequently, medical updates were shared late in the patient’s hospital course, which may have limited the PC team’s ability to establish a therapeutic relationship with the spouse and provide valuable support. Both cases emphasize the necessity of PC access for IPs at EOL. PC teams, through their interdisciplinary approach, are adept at advocating for surrogates and addressing communication barriers. We believe these efforts can greatly enhance the EOL experience for all patients and their families, ensuring they remain informed and supported throughout critical transitions. 7
Surrogate Identification and Palliative Care Needs of Incarcerated Patients in a Health Care Setting
The foundational legal principle in Estelle v. Gamble affirms that prisoners retain their constitutional right to adequate health care. 4 However, these rights are not absolute and may be limited by legitimate penological interests. 6 Constitutional law does not directly address decision-making for incapacitated IPs, but it is recommended in general that state surrogacy laws should be followed. 6 In the specific context of the cases presented, the Tennessee Health Care Decisions Act outlines a structured process for identifying surrogates for incapacitated patients, emphasizing the importance of personal values, care, and availability. 8 There is mention of, but no requirement to follow, next-of-kin hierarchy. Of note, while there is no explicit law governing decision-making for incapacitated IPs, the Tennessee Department of Corrections has outlined an internal policy for all state prisons that explicitly instructs adherence to the Tennessee Health Care Decisions Act for surrogate decision-making. 9
Many IPs, correctional facility staff, and health care providers may be unaware of hospital policies around decision-making for IPs and the legal frameworks governing surrogacy rights. 5 The variability of and the lack of clarity in readily available information surrounding surrogacy laws could lead to delays in care and create an ethical burden for providers who must navigate complex legal landscapes while ensuring appropriate and timely treatment.10,11 Health care teams, despite working in facilities that have established policies and procedures on surrogacy for IPs, may be unaware of said policies, impeding their ability to engage an appropriate decision maker. Incorrect assumptions, such as believing the warden is the decision maker and the lack of direct contact information for next of kin, may further impact decision-making. 12
Misinformation and uncertainty regarding the policies governing the rights of IPs often create barriers that prevent timely and effective care. Reliance on prison policies can hinder the involvement of families or designated surrogates in medical decision-making. 3 The need for clear, specific, comprehensive, and accessible policies regarding surrogate decision-making for IPs at the hospital and state level is evident, as these policies can significantly affect the quality of care provided to incapacitated IPs. This challenge is exacerbated by restrictions on visitation rights and unreliable communication channels, which impede securing surrogate consent for important interventions at the bedside during emergent situations in serious illness and at the EOL. IPs frequently lack representation, and policies aimed at surrogate decision-making for unrepresented patients are less common and, if present, often fail to apply within correctional facilities.13–15
Developing comprehensive strategies that anticipate barriers and address the need for surrogate decision-making and PC delivery for IPs is crucial (Table 1). It includes creating clear protocols for identifying and engaging suitable surrogates when IPs cannot make decisions for themselves. Such strategies protect the health and uphold the rights of IPs, ensuring they receive appropriate and dignified care.10,16
Barriers and Optimal Practices in Palliative Care Delivery for Incarcerated Patients
Footnotes
Author Disclosure Statement
No competing financial interests exist.
Funding Information
No funding was received for this article.