Prison and jail health care, despite occasional pockets of inspiration, provided by programs affiliated with academic institutions, is an arena of endless ethical conflict in which health care providers must negotiate relentlessly with prison officials to provide necessary and decent care. The “right to health care” articulated by the Supreme Court pre-ordained these ongoing tensions. The court reasoned that to place persons in prison or jail, where they could not secure their own care, and then to fail to provide that care, could result in precisely the pain and suffering prohibited by the Eighth Amendment to the Constitution. Good reasoning was followed by a deeply flawed articulation of the “right” that defines the medical care entitlement as care provided to inmates without “deliberate indifference to their serious medical needs.” By forging a standard which was, and remains, unique in medicine and health care delivery — designed to avoid intruding on state malpractice litigation regarding adequacy of practice and standards of care — the court guaranteed that dispute would surround delivery. That first framing, which did not establish a right to “standard of care” or to care delivered according to a “community standard,” set the stage for endless ethical and legal conflict. The Eighth Amendment’s deliberate indifference standard, forbidding cruel and unusual punishment, presents a relatively demanding standard for proving liability. The Eighth Amendment, as interpreted by the federal courts, does not render prison officials or staff liable in federal cases for malpractice or accidents, nor does it resolve inter-professional disputes — or patient-professional disputes — about the best choice of treatment. It does require, however, that sufficient resources be made available to implement three basic rights: the right to access to care, the right to care that is ordered, and the right to a professional medical judgment. The mission of medical care is to diagnose, comfort, and cure; the goal of a prison or jail is to confine, punish, and, almost accidently these days, rehabilitate. There is an inevitable collision between these two sets of goals, exacerbated because correctional facilities are “inherently coercive institutions that for security reasons must exercise nearly total control over their residents’ lives and the activities within their confines.” Medical providers are accustomed to directing care provided according to their orders and designed to be in the best interests of the patient. In correctional settings medical orders are often an irritant to correctional authorities who might need to reorder schedules to accommodate medical needs or augment or change diets, thus deviating from pre-determined systems and rules. Crucial to understanding the dynamic of inmate/patient compliance with a medical regimen, note that it is almost impossible in a correctional setting to decide between a refusal of care and a denial of care. Does the fact that an inmate was absent at the clinic mean that he or she chose not to attend or was prevented from attending? Only a case-specific inquiry, of which there may be numerous ones every day, can distinguish between a decision made by an inmate based on individual moral agency and a decision made by a correctional officer based on clear disregard of the inmate’s well being or on disciplinary zeal. And inmates are not passive in this process. As flawed as the medical services might be, they provide one, constitutionally protected, avenue to escape boredom or deviate from a schedule. Health care staff are trained to be compassionate, sympathetic and supportive even if these nurtured professional instincts are modified over time by frequent clashes with correctional culture. A nurse is still likely more sympathetic than a correctional officer to the actual or perceived self-identified needs of the inmate. Furthermore, as one inmate said to me, “everything hurts more” in prison or jail. As connections to the outside world are severed, as the rewards for showing up at a boring relatively non-remunerative job are diminished and the tedium increased, sick call becomes ever more attractive as the organizer of the day’s activities. But sick call can rarely address the real emotional, medical, or mental health needs of inmates who, as a part of the general correctional population—mainly poor young men of color, with little previous access to care — arrive at the institution with far more intense and more neglected medical problems than a non-incarcerated age matched cohort. Medically neglected problems of untreated hypertension and extensive tooth decay are the norm. With state and Federal budgets pinched and hyper-incarceration still swelling the inmate general population, underfunded and understaffed medical facilities can simply not cope with the reasonable demand for services addressing previously unmet and present needs. A singular, and far more significant, problem exists in regard to mentally ill inmates. The decision to de-institutionalize the mentally ill was part of a larger plan to provide community services and group homes designed to care for those who still needed ongoing services or residential facilities. However alternative facilities were not constructed, nor were adequately staffed community clinics created, and now prisons are the primary care providers for the mentally ill. This is ethically catastrophic in two ways. First, correctional medical facilities were never constructed with parity between physical and mental health abilities. The key early cases that provided the platform for Supreme Court review described inmates, unsupervised, performing surgery on other inmates and a deserted terminally ill inmate whose body was covered by maggots. The cases the Supreme Court reviewed in decreeing the right to health care were based on reportable and visible violations of care that, in the language of early cases, “shocked the conscience.” Violations of mental health care needs are more slippery to detail and describe, as manifestation of illness will likely emerge as violations of the facilities’ rules of conduct. Nonetheless, it is often mental illness rather than defiance that undergirds the inmate’s action leading to punishment and not treatment. Second, overriding the importance of complying with a less than robust “right to health care” and encouraging questionably adequate systems of care, has been the rapid expansion of for profit prisons, and of for profit prison health care corporations, which may serve privately or publicly operated prisons. These medical industries promise the state and local jurisdictions that they will establish protocols, generate procedures, benefit from economies of scale, escape from union contracts, and provide constitutionally adequate care at lowered cost. With the hyper-incarceration of the last decades, these promises of financial savings have been powerful incentives for contracting out care. Given the powerful commercial incentives to hide costs and expenditures, there are no readily available data demonstrating the correctness of the commercial health care claims. In these arrangements, providers are subservient to for-profit companies and to correctional decrees and often lack the independence of soul and spirit that is required for the constant diplomacy needed to create a health care space in a setting designed solely to confine and punish. Nonetheless, for many inmates who are poor and of color, correctional health care, despite its legal and ethical limitations, is a plus given the desert of medical neglect they inhabited on the outside. Query whether the Affordable Care Act will change this calculus. Specific Arenas of Conflict The doctor-patient relationship, informed consent and refusal. Outside of prisons, given the variability of medical relationships governed by health care organizations and payment mechanisms, the norm is that physicians, or increasingly physician extenders, provide options that they judge are “in the best interest” of the patient. The patient then considers the diagnosis, prognosis, alternatives for treatment, and the possible consequences of refusing all interventions. In correctional settings this relationship is further deformed from the idealized, but rarely realized, norm on the outside by the additional barriers to physicians and other medical practitioners having all of the medical alternatives available to the inmate. The doctrine of informed consent envisions the interaction of two moral agents, one with superior knowledge and skill who desires to empower the other as patient. The patient brings to the encounter a history with medical interventions, individual values and beliefs, and personal likings and dislikes. This sharing of authority and responsibility is undercut by every rule and custom of correctional institutions. The provider-patient relationship must survive the devaluing and undermining of the sense of individual worth and moral agency that correctional settings are designed to extinguish. The options offered are generally not all those that medicine could and should provide given the condition of the inmate and what is really in his/her best interest. Surprisingly, sometimes real sharing actually happens, fostered by a committed physician and a courageous patient. Discussions about whether or not inmates can provide legally and ethically adequate informed consent had been dominated by discussions of informed consent to research and the excesses in risk over benefit that all research reflects. Research is designed to contribute to generalizable knowledge, not to support the best medical interests of the patient. Inmates may value the incentives of clean facilities and better food that much research behind bars has offered, but they may be harmed by the intervention itself. Thus the Federal Regulations 45 CFR 46 Subpart C ended up prohibiting most research in correctional settings. The AIDS epidemic refocused these discussions. In the early and middle years of epidemic, almost all interventions were available only within protocols. Suddenly inmates, and their advocates, wanted access to research protocols rather than protection from research risks. The federal office charged with interpreting Subpart C of the Federal regulations opined that, if there were no placebo arm in a trial, if both arms were active substances, then it was not barred by the federal regulations. Commentators argued that inmates had as much authority to provide informed consent to these trials as non-incarcerated persons. The notion that inmates could provide ethically and legally adequate informed consent to research, and by extension to treatment, was forged in the AIDS epidemic and was followed by the IOM in its study on Research in Prisons. In most contexts the right to consent to care naturally brings with it a concomitant right to refuse care. But, as noted above, this is a distinctly different discussion in correctional settings. This equality of moral choice may be restricted in incarcerated settings. Courts have held that the right to refuse care might create confusion and discord in the prison if it is interpreted by other inmates as an institutional refusal of care. Thus, it may be precluded by administrative decision. Some institutions require that a medical practitioner witness the refusal, which provides a safeguard as well as an opportunity to counsel the patient. Even absent such a procedure, some investigation should occur for an inmate who does not appear for treatment if the appointment is for a serious condition and a lapse in treatment might result in deterioration of health status or an overall poor outcome. Prison doors close for many reasons, and precluding inmates from pursuing their indentified self-interest, as noted above, medical or otherwise, is one of these reasons. Confidentiality. Inmates have the right to expect that their medical information will be protected against unnecessary disclosure and against gossip. Courts have not been bound by the “deliberate indifference” standard in these matters, but rather by the notion that a breach of an inmate’s rights must be reasonably related to a legitimate penological interest. However, real confidentiality is not possible in a correctional setting. Everyone sees where everyone goes at all times. Attending the HIV/AIDS clinic in plain view of the general population precludes denial of HIV/AIDS. Although there is a lessened tendency to stage single-disease clinics now, in contrast to past decades, any route reveals purpose as all eyes watch. As with other ethical tenets of medicine, maintaining confidentiality is an ongoing struggle to protect medical information and personal secrets against the natural inclination of a total system to know all that could possibly be revealed about a person in its controls. End-of-Life care and the graying of correctionalinstitutions. At yearend 2008, an estimated 5,672 inmates in state and federal prisons had confirmed AIDS, down from 5,762 in 2007. In 2007, about 43 per 10,000 prison inmates were estimated to have confirmed AIDS, compared to 17 per 10,000 persons in the general population. Inmates are sick with HIV/AIDS and are gradually “graying” as “three-strikes and you’re out” laws, determinate sentences, and other get-tough policies result in longer stays in correctional facilities. But prisons are not safe environments for persons with cognitive and physical deficits. Values play a very special role in end-of-life care. Transporting free-world solutions to incarcerated persons may increase rather than diminish their suffering. In the non-incarcerated world the use of Advance Directives, Living Wills, and Proxy Appointments has permitted patients to leave explicit instructions about their medical care or to appoint a person with authority to act when the patient has lost decisional capacity. In addition hospice care permits patients to be treated with kindness when acute care interventions offer only a balance of burden over benefit. But all of the above free world interventions assume that the care offered before incapacity and before a terminal state appears has been adequate to the needs of the patient. In correctional settings this assumption is not valid. Especially when referral to a specialist outside of the prison is needed, there is no assurance that the patient will be able to access this care in a timely fashion with repeated visits if necessary. Therefore, before care is judged to be terminal there must be a review by outside medical experts to insure that there is not some simple and cost effective way to address the patient’s illness or disease. Ethical dilemmas unique to the correctional setting. Some dilemmas are unique to correctional health services. They include: performing strip and cavity searches, witnessing forced moves, approving an unpalatable but nutritiously adequate diet as appropriate for punishment, certifying that someone is sufficiently healthy for placement in solitary confinement or is sufficiently aware to be executed. These site-specific medical functions and decisions never occur in any other setting, and the irony is that it is inmates and their advocates who often lobby for the medical staff to perform these ethically compromising functions. The logic of the arguments is that medical staff will be more gentle, fair, and principled than the correctional staff that would otherwise perform these functions. Yet, it compromises the very basic patient-centered ethic for the medical staff to step into these clearly correctional functions. There are clearly good and decent medical professionals who work in prisons and jails. They are committed to delivering care according to an acceptable medical standard, to meeting the needs of inmates, and to the degree possible, maintaining the community standard of patient centered care and practice. They need be forever vigilant to maintain this stance. They must regularly renegotiate their ethical space in order to preserve their independence and effectiveness. Written by : NANCY NEVELOFF DUBLER LL.B. is Consultant for Bioethics at the New York City Health and Hospitals Corporation. Source
