Equity in Clinical Care and Research Involving Persons with Disorders of Consciousness.

People with disorders of consciousness (DoC) are characteristically unable to synchronously participate in decision-making about clinical care or research. The inability to self-advocate exacerbates preexisting socioeconomic and geographic disparities, which include the wide variability observed across individuals, hospitals, and countries in access to acute care, expertise, and sophisticated diagnostic, prognostic, and therapeutic interventions. Concerns about equity for people with DoC are particularly notable when they lack a surrogate decision-maker (legally referred to as "unrepresented" or "unbefriended"). Decisions about both short-term and long-term life-sustaining treatment typically rely on neuroprognostication and individual patient preferences that carry additional ethical considerations for people with DoC, as even individuals with well thought out advance directives cannot anticipate every possible situation to guide such decisions. Further challenges exist with the inclusion of people with DoC in research because consent must be completed (in most circumstances) through a surrogate, which excludes those who are unrepresented and may discourage investigators from exploring questions related to this population. In this article, the Curing Coma Campaign Ethics Working Group reviews equity considerations in clinical care and research involving persons with DoC in the following domains: (1) access to acute care and expertise, (2) access to diagnostics and therapeutics, (3) neuroprognostication, (4) medical decision-making for unrepresented people, (5) end-of-life decision-making, (6) access to postacute rehabilitative care, (7) access to research, (8) inclusion of unrepresented people in research, and (9) remuneration and reciprocity for research participation. The goal of this discussion is to advance equitable, harmonized, guideline-directed, and goal-concordant care for people with DoC of all backgrounds worldwide, prioritizing the ethical standards of respect for autonomy, beneficence, and justice. Although the focus of this evaluation is on people with DoC, much of the discussion can be extrapolated to other critically ill persons worldwide.

Navigating the acute to post-acute transition with patients: a first characterization of medical student knowledge gaps in rehabilitation and post-acute care.

PURPOSE: Clinical rehabilitation and post-acute care (PAC) learning experiences are not uniformly required within medical school core curricula in the United States or internationally. This study aims to characterize what medical students might know/need to know to support patients in the transition from acute hospitalization to post-acute rehabilitation settings. MATERIALS/METHODS: The medical student cohort completing required clinical rotations in a United States quaternary care hospital system was provided a voluntary survey prompting reflection on experiences discharging patients to rehabilitation/PAC and related learning needs. Data were analyzed using descriptive statistics and qualitative grounded theory. RESULTS: Response rate was 72% (39/54). All respondents reported at least one gap in rehabilitation/PAC knowledge, falling into 8 themes: daily experience of rehabilitation/PAC; determination of eligibility/screening processes; distinctions among levels of rehabilitation/PAC; insurance coverage/equity; rehabilitation/PAC clinical practice environment; post-rehabilitation/PAC discharge support; medical capabilities within PAC settings; developing rehabilitation goals. CONCLUSIONS: Despite caring for patients discharged to post-acute rehabilitation settings, medical students lack essential knowledge about the process of rehabilitation and recovery, including patient eligibility for and service availability across PAC settings. Explicit rehabilitation/PAC education for medical students could enhance their ability to counsel and advocate for patients with disability and rehabilitation needs through care transitions.Implications for rehabilitationMedical students lack knowledge about rehabilitation and post-acute care that is important for helping patients navigate the acute to post-acute transition.Dedicated rehabilitation/post-acute care education could prepare trainees for counseling and advocating for patients during care transitions.Knowledge gaps identified in this study could inform development of curricular interventions to address medical student learning needs.

Toward Uniform Insurer Coverage for Functional MRI Following Severe Brain Injury.

Functional magnetic resonance imaging (fMRI) now promises to improve diagnostic and prognostic accuracy for patients with disorders of consciousness, and accordingly has been endorsed by professional society guidelines, including those of the American Academy of Neurology, American College of Rehabilitation Medicine, National Institute on Disability, Independent Living, and Rehabilitation Research, and the European Academy of Neurology. Despite multiple professional society endorsements of fMRI in evaluating patients with disorders of consciousness following severe brain injury, insurers have yet to issue clear guidance regarding coverage of fMRI for this indication. Lack of insurer coverage may be a rate-limiting barrier to accessing this technique, which could uncover essential diagnostic and prognostic information for patients and their families. The emerging clinical and ethical case for harmonized insurer recognition and reimbursement of fMRI for vulnerable persons following severe brain injury with disorders of consciousness is explained and critically evaluated.

Bioenhancements and the telos of medicine.

Staggering advances in biotechnology within the past decade have given rise to pharmacological, surgical and prosthetic techniques capable of enhancing human functioning rather than merely treating or preventing disease. Bioenhancement technologies range from nootropics capable of enhancing cognitive abilities to distraction osteogenesis, a surgical technique capable of increasing height through limb lengthening. This paper examines whether the use of bioenhancements falls inside or outside the proper boundaries of healthcare, and if so, whether clinicians have professional responsibilities to administer bioenhancements to patients. After explicating two theoretical approaches to the concept of health, one objectivist and the other constructivist, I contend that clinicians' corresponding professional responsibilities hinge on which philosophical account of health is endorsed, and illustrate how the lack of analytic clarity with respect to this concept can lead to defective positions on the place of bioenhancements in healthcare. With this conceptual framework in place, an account of health as a cluster concept that incorporates both constructivist and objectivist components is developed and defended.

Undocumented injustice? Medical repatriation and the ends of health care.

The authors review the history and motivations behind medical repatriation, the transfer of undocumented patients in need of subacute care to their country of origin. They argue that involuntary medical repatriation violates the ethical duties of health care providers.

Rationing in the intensive care unit: to disclose or disguise?

INTRODUCTION: Growing pressures to ration intensive care unit beds and services pose novel challenges to clinicians. Whereas the question of how to allocate scarce intensive care unit resources has received much attention, the question of whether to disclose these decisions to patients and surrogates has not been explored. KEY CONSIDERATIONS: We explore how considerations of professionalism, dual agency, patients' and surrogates' preferences, beneficence, and healthcare efficiency and efficacy influence the propriety of disclosing rationing decisions in the intensive care unit. CONCLUSIONS: There are compelling conceptual reasons to support a policy of routine disclosure. Systematic disclosure of prevailing intensive care unit norms for making allocation decisions, and of at least the most consequential specific decisions, can promote transparent, professional, and effective healthcare delivery. However, many empiric questions about how best to structure and implement disclosure processes remain to be answered. Specifically, research is needed to determine how best to operationalize disclosure processes so as to maximize prospective benefits to patients and surrogates and minimize burdens on clinicians and intensive care units.

Pre-equating: a simulation study based on a large scale assessment model.

Although post-equating (PE) has proven to be an acceptable method in the scaling and equating of items and forms, there are times when the turn-around period for equating and converting raw scores to scale scores is so small that PE cannot be undertaken within the prescribed time frame. In such cases, pre-equating (PrE) could be considered as an acceptable alternative. Assessing the feasibility of using item calibrations from the item bank (as in PrE) is conditioned on the equivalency of the calibrations and the errors associated with it vis a vis the results obtained via PE. This paper creates item banks over three periods of item introduction into the banks and uses the Rasch model in examining data with respect to the recovery of item parameters, the measurement error, and the effect cut-points have on examinee placement in both the PrE and PE situations. Results indicate that PrE is a viable solution to PE provided the stability of the item calibrations are enhanced by using large sample sizes (perhaps as large as full-population) in populating the item bank.