The American Academy of Physical Medicine and Rehabilitation defines the PM&R specialty as “the branch of medicine emphasizing the prevention, diagnosis, and treatment of disorders—particularly related to the nerves, muscles, bones and brain—that may produce temporary or permanent impairment” [1]. These disorders range from spina bifida and muscular dystrophy to sports injuries and musculoskeletal pain to Parkinson disease. Physiatrists—specialists in PM&R—also care for people with spinal cord injuries and fit prosthetics for those who have had limb amputations. The ultimate goal is to improve movement as much as possible and reduce the psychological, emotional, familial, and vocational stresses that come with temporary or permanent loss of motor function. The field is notable for providing long-term care and for collaborating closely with orthopedic surgeons, physical therapists, occupational therapists, and other health care professionals.
Although society was, for a long time, not particularly accommodating to people with physical impairment, and words like “cripple” or “gimp” were said aloud, great strides have been made in the last three or four decades. Arguably, individuals with disabilities like physicist Stephen Hawking (amyotrophic lateral sclerosis), actor Christopher Reeve (quadriplegia), actor Michael J. Fox (Parkinson disease), and boxer Muhammad Ali (Parkinsonism) have shown that a physical disorder or impairment is not the end to a productive and valuable life. Today, public support for research into physical disorders is more robust than ever, with disease organizations focused on physical disability—like the Michael J. Fox Foundation, Myelin Repair Foundation, Parkinson’s Disease Foundation, Muscular Dystrophy Association, ALS Association, National Multiple Sclerosis Society, American Parkinson Disease Association, National Parkinson Foundation, and Arthritis Foundation—ranking among the top 20 research grant providers in the United States [2]. More visibly, and largely subsequent to the Americans with Disabilities Act of 1990, ramps, elevators, and other assistive services are found routinely in schools, shopping centers, airports, and businesses. The Paralympic Games for athletes with disabilities are run in partnership with and in the same city and venue as their more well-known Olympic counterpart [3].
The ethics of treating patients with a variety of physical impairments and disabilities is as complex as the clinical aspects. Some physical impairments are permanent or lack “easy fixes,” so the process of rehabilitation is often a protracted and frustrating one. And because medicine does not provide a cure for many disabling conditions, patients’ expectations and hopes must be carefully informed and a fine balance of optimism and caution maintained.
The goal of this issue of the AMA Journal of Ethics is to identify some of the ethical concerns professional caregivers must bear in mind when helping patients recover from physical disorders and injuries while, at the same time, upholding their clinical and ethical standards. These concerns include how best to help those with impairment think realistically about the immediate and long-term future, planning safe discharge, securing equal access to rehabilitation care for all, and managing long-term pain. A secondary goal of the issue is to provide a better picture of the work that physiatrists do through a look at the history of the specialty and the education of its resident trainees.
Three articles speak to physiatrists’ central task: helping patients adapt to an impaired “self.” Kristi L. Kirschner, MD, a physiatrist at the Schwab Rehabilitation Hospital and faculty member at the University of Illinois in Chicago, analyzes physician paternalism in a case in which a former Navy Seal refuses recommended care. Adam S. Tenforde, MD, a PM&R fellow in sports medicine, and Michael Fredericson, MD, a professor and director of the PM&R sports medicine program at Stanford University, address the importance of managing an injured high school athlete’s expectations for recovery. Debjani Mukherjee, PhD, director of the ethics program at the Rehabilitation Institute of Chicago and an associate professor of PM&R and medical humanities and bioethics at Northwestern University, discusses two articles that shed light on the relationship among amyotrophic lateral sclerosis, depression, and a wish to die.
James Hill, MD, an assistant professor and director of the residency program at the University of North Carolina at Chapel Hill, and William Filer, MD, an assistant professor and associate director of the residency program in the Department of PM&R at the same institution, consider the topic of safe discharge through the case of a woman with a spinal cord injury who is medically ready but lacks the proper home setting for optimal discharge from an inpatient rehabilitation facility.
Equal access and equitable care for all people with all types of injuries is a PM&R goal. Paul F. Pasquina, MD, residency program director of PM&R at Walter Reed National Military Medical Center and chair of PM&R at the Uniformed Services University of the Health Sciences, Antonio J. Carvalho, researcher at Walter Reed National Military Medical Center, and Terrence Patrick Sheehan, MD, chief medical officer at Adventist Rehabilitation Hospital of Maryland, identify disparities in access to and quality of prosthetics for patients who have had limbs amputated. In the health law section, Richard Weinmeyer, JD, MA, MPhil, a senior research associate for the AMA’s Council on Ethical and Judicial Affairs, explains why veterans returning with posttraumatic stress disorder are not currently entitled to service dog benefits from the Department of Veterans Affairs (VA) while those with physical disability are. And Steve Ullmann, MD, professor and director of the Center for Health Sector Management and Policy at the University of Miami, describes how the 2010 Patient Protection and Affordable Care Act has changed delivery of rehabilitation care.
Long-term management of pain continues to challenge physicians and patients alike. Mitchell J. Cohen, MD, vice chair for education and an associate professor in the Department of Psychiatry and Human Behavior, and William C. Jangro, MD, an instructor in the Department of Psychiatry and Human Behavior, both at Thomas Jefferson University, discuss a 2010 article on the ethics of prescribing opioids for chronic noncancer pain. Michael Krawitz, a US Air Force veteran and the executive director of Veterans for Medical Cannabis Access, brings readers up to date on the VA’s evolving medical marijuana policy for its patients.
The medical rehabilitation model discussed so far has come under some criticism from the disability advocacy community for its view of impairments and disabilities as “deficits.” John Banja, PhD, a professor in the Department of Rehabilitation Medicine and a medical ethicist at the Center for Ethics at Emory University, offers a rebuttal to this critique.
For some background about the PM&R specialty, we enlist Levi Atanelov, MD, a resident in PM&R at Johns Hopkins University, Steven A. Stiens, MD, associate professor of rehabilitation medicine at the University of Washington, and Mark A. Young, MD, chair of PM&R at the Maryland Division of Rehabilitation Services. They recap the history of PM&R as a field and the ethical issues physiatrists commonly face. Julian Willoughby, MD, a resident in PM&R, Vu Nguyen, MD, an associate professor, the vice-chair of academics, and residency program director, and William L. Bockenek, MD, professor and chair in the Department of PM&R, all at the Carolinas Medical Center/Carolinas Rehabilitation, explain the role of competency-based milestones in assessing the training of physiatry residents.
Kyle T. Amber, a transitional year resident at MacNeal Hospital in Berwyn, Illinois, sheds some colored light on physiatry with his artistic depiction of a knee radiograph. The piece highlights the many facets that any single clinical or ethical “picture” always presents.
In this month’s podcast, Jonathan D. Moreno, PhD, professor in the Department of Medical Ethics and Health Policy at the University of Pennsylvania and a senior fellow at the Center for American Progress, discusses the American military’s role in developing physical enhancements for soldiers and the ethical implications of military research into physical disability.
Discussions about the ethics of many types of medical practice are commonplace, but discussions about the ethics of rehabilitation medicine are encountered less often. Perhaps this is because most people who do not have impairments think they will never face disability. At some point, though, many will, whether it is through injury, stroke, or disease. It is therefore important that health professionals respect and understand the complexity of treating, both clinically and ethically, those with temporary or permanent impairment in motor function.
References
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American Academy of Physical Medicine and Rehabilitation. About physical medicine and rehabilitation (PM&R). http://www.aapmr.org/patients/aboutpmr/Pages/default.aspx. Accessed April 22, 2015.
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Philippidis A. Top 20 grant-giving disease foundations. Genetic Engineering and Biotechnology News. May 28, 2013. http://www.genengnews.com/insight-and-intelligence/top-20-grant-giving-disease-foundations/77899817/?page=1. Accessed April 23, 2015.
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Olympic Movement. Paralympic Games. http://www.olympic.org/content/olympic-games/paralympic-games/?tab=paralympic-games. Accessed April 24, 2015.