Debjani Mukherjee

The cognitive, emotional, and social sequelae of stroke: psychological and ethical concerns in post-stroke adaptation.

Abstract In the clinical domain, ethical analyses involve examination of complex individual responses, psychological processes, and social context. Psychological aspects of stroke adaptation include the risk for depression and anxiety, changes in identity and personality processes, and potential for social isolation. Depression and anxiety are heterogeneous constructs and can affect individuals’ emotional functioning and cognitive abilities. Executive function, self-agency, and volition may be affected. Alterations in identity and personality may also result from the interaction of fluctuating emotional, cognitive, and physical abilities as well as from changes in social context and family dynamics. Social isolation, or lack of access to social contact or resources, can be a consequence of difficulties in cognitive and emotional function that influence interpersonal relationships, changes in social roles, communication difficulties, and challenges in transportation and employment. Social stigma and marginalization also contribute to isolation. The authors describe these psychological phenomena in the context of brain damage and recovery and raise ethical concerns including impact on decision-making capacity, pre- and postinjury selves and interests, and the social milieu in which strokes are experienced.

Women Living with Traumatic Brain Injury: Social Isolation, Emotional Functioning and Implications for Psychotherapy

Abstract Women living with Traumatic Brain Injury (TBI) typically experience social and emotional sequelae that can be effectively addressed in the context of a psychotherapeutic relationship. Traumatic Brain Injuries can affect the full range of human functioning, from activities of daily living to experiencing a coherent sense of self. In this article, we focus on two issues, social isolation and emotional functioning, that encompass a number of key challenges facing women with TBI and are common and fruitful foci of psychotherapy. Social isolation includes marginalization in multiple communities, the invisibility of cognitive disabilities, difficulties in interpersonal relationships, and difficulties in employment and access to transportation. Emotional functioning includes posttraumatic stress symptoms, loss of self-esteem, anxiety, depression, anger, and shame. Two exemplary cases are used to illustrate the themes and underscore the complexities and realities of adjusting to TBI. Recommendations for therapists and consumers are woven throughout the paper.

Moral Distress in Rehabilitation Professionals: Results From a Hospital Ethics Survey

Moral distress in the rehabilitation setting was examined in a follow‐up survey. The survey had 3 goals: (1) to systematically and anonymously gather data about the ethical issues that employees struggle with in their daily work; (2) to raise the visibility of the hospital‐based ethics program and resources available to employees; and (3) to prioritize and focus the direction of the programs educational seminars, quality improvement projects, and ethics consultation.

Clinician Perspectives on Decision-making Capacity After Acquired Brain Injury

Abstract Acquired brain injury frequently alters an individual’s ability to make health care decisions based on a clear understanding of the situation and options. This exploratory study investigated the ways health care providers address issues of decisionmaking capacity (DMC) on a daily, functional basis. 33 clinicians providing rehabilitation services to persons with acquired brain injury participated in 1 of 5 semi-structured focus groups. All 33 participants, representing 8 different occupations, agreed that DMC determinations affected their practice every day. Participants underscored a multidimensional rather than a unitary definition of DMC, with an emphasis on fluctuating capacities due to the injury. Important concerns were for the safety of the person with brain injury, the health care provider, and community members. Other themes included rehabilitation team involvement, family context, and professional socialization. Clinical determinations of DMC are context dependent and are affected by the abilities of the individual and the substance and consequences of the decision being made and include the concepts of regaining trust and reclaiming capacity.

Time to Make a Call? The Ethics of Mandatory Reporting

Over 50 years ago, the first U.S. laws were passed regarding the mandatory reporting of suspected child abuse and neglect. During the ensuing decades, other laws have emerged that delineate the role of the physician in protecting his or her patients as well as the public. In theory, the reporting by clinicians who become aware of concerns plays a critical role in decreasing harms; however, in practice, various tensions exist, including the limits of our observations, the veracity of information received, and perhaps an underlying ambivalence about privacy and the role of the doctor. This column grapples with the ethical issues of mandatory reporting. Why might we be reluctant to report suspected abuse or neglect, someone who is unsafe to drive, or a colleague who is impaired? At the core of the concerns about reporting is the relationshipdthat between doctor and patient, doctor and family members, and between colleagues. Many also express distrust in systems or worry about what will be done with the information that is provided to the authorities. In the first essay, Rebecca Brashler, LCSW, Director of Global Patient Services at the Rehabilitation Institute of Chicago and a colleague in the Rehabilitation Institute of Chicago’s Donnelley Ethics Program, discusses the

Perceived Quality of Life With Spinal Cord Injury: A Comparison Between Emergency Medicine and Physical Medicine and Rehabilitation Physicians

To explore the attitudes of health care providers who treat patients with spinal cord injury (SCI) and examine whether Emergency Medicine (EM) and Physical Medicine and Rehabilitation (PM&R) physicians differ in their judgments about quality of life (QOL) after SCI.

The Controversy Surrounding Central Institutional Review Boards

R D b I D or this column, we are tackling an issue that many in rehabilitation may not be familiar ith—namely, central institutional review boards (CIRBs). As rehabilitation research coninues to grow, particularly in collaboration with pharmaceutical and device manufacturers, IRBs will probably play an increasingly prominent role. Given the likely unfamiliarity of the issues posed by CIRBs, what follows is a brief ommentary (by me, and my colleagues Teresa A. Savage, PhD, RN, and Debjani Mukherjee, hD, of the Rehabilitation Institute of Chicago Donnelley Family Disability Ethics Program nd Northwestern University Feinberg School of Medicine Medical Humanities and Bioethcs Program) that lays out the issues, followed by expert commentaries and responses by Dr. ohn Whyte and Dr. Norman Harden. As always, we invite your comments and responses to his column!

Prognosis Disclosure in Spinal Cord Injury

No one likes to deliver bad news, including doctors, who often have to discuss a poor prognosis with patients and their families. The subject of prognosis disclosure has been well-studied in the oncology literature [1-3], but less so in rehabilitation. For many life-limiting diagnoses, cancer and dementia, for example, prognosis disclosure is confounded by the uncertainties of disease course and response to treatment. Spinal cord injury (SCI), on the other hand, is a life-changing diagnosis with more certainty about outcomes and prognoses based on a patient’s American Spinal Injury Association Impairment Scale [4]. In theory, this should make prognosis disclosure easier, but it is not necessarily so. In all cases of disclosing a “poor” prognosis, the goal is to maintain hope, promote shared decision-making, and engender trust. It is important to pay attention to what question thepatient is asking andattend to their emotional and cognitive needs [5]. The questions “when will I walk again?” and “will I ever walk again?” are very different and require the physician to first acknowledge where the patient is in his/her understanding of diagnosis and proceed with expertise, honesty and compassion. In the face of a patient and family experiencing the emotional after effects of a trauma, this is often easier said than done. For this column, I have asked several experts to give their perspectives and reflect on their experiences of prognosis disclosure in SCI. Dr. Joyce Fichtenbaum, psychologist at Kessler Institute for Rehabilitation, and Dr. Steven Kirshblum, Director of Spinal Cord Injury Services, Kessler Institute for Rehabilitation and Professor, Rutgers New Jersey Medical School, have published on this topic and offer us some general guidelines and a case study in prognosis disclosure. Dr. Lisa Ruppert, Assistant Attending of Rehabilitation Medicine Services at Memorial Sloan Kettering Cancer Center and Assistant Professor of Rehabilitation Medicine at Weill Cornell Medical College, has dual specialization in Cancer Rehabilitation and SCI medicine, and has unique experience and insights on the difficulties of prognosis disclosure in patients with metastatic SCI. Finally, Ms. Thea Flaum, president of the Hill Foundation and founder of the FacingDisability.com website and an advocate for people with SCI, shares some personal reflections about how prognosis disclosure affected people with SCI.

Disability Stigma in Rehabilitation

In the 26 years since the Americans with Disabilities Act was passed, we have seen changes in access, knowledge, and a move towards equity for people with disabilities; however, societal attitudes and implicit and explicit biases continue to impact the way that people with disabilities are viewed, represented, and treated. A simple definition of stigma from Merriam Webster is “a set of negative and often unfair beliefs that a society or group of people have about something” [1]. In his classic book, Stigma: On the Management of a Spoiled Identity [2], Erving Goffman, a sociologist by training, described and delineated the concept of stigma and how it impacts society. He described complex phenomena that include devaluation and marginalization. Although critiqued and refined over the years, the concept of stigma that Goffman described is a robust and important one to consider. Stigma, and more specifically disability stigma, is part of the social, psychological and ethical context in which physical medicine and rehabilitation (PM&R) clinicians practice. This columnwill explore the concept of disability stigma and its impact on the practice of rehabilitation medicine. This idea for a column is based in large part on a course that I teach to undergraduates at Northwestern University called “Disability and Global Health,” in which we define, discuss, and consider disability stigma in various contexts around the world. We also discuss disability rights and disability ethics in the United States. One of the first reading assignments for the course is an article by Lerita Coleman, “Stigmadan enigma demystified” [3]. Coleman writes that stigma has at least 3 components:

The Team Physician: Ethical and Legal Issues

I have asked Gayle Spill, MD, to guest edit this Ethical Legal column. Dr Spill is a physiatrist and clinical ethicist who has been in practice for more than 20 years and has written on topics including cancer prognosis disclosure and quality of life considerations. She and I invited 3 experts to respond to a general query about the ethical and legal issues surrounding the team physician. Our first columnist, Cheri Blauwet, MD, is a physiatrist at Spaulding Rehabilitation Hospital and the Brigham and Women’s Hospital in Boston, a Paralympic gold medallist, and chairperson of the Medical Committee of the International Paralympic Committee. Our second