Who Will Provide Care for People With Complex Physical Disabilities?

This issue of PM&R includes an “Invited Perspectives” article that profiles Dr Henry Betts. My conversation with him has led me to reflect on his question of whether it has been a good idea for our field to expand to champion musculoskeletal and sports rehabilitation [1]. As chairman of the Department of Physical Medicine and Rehabilitation at The Rehabilitation Institute of Chicago (RIC) at the time, he had resisted the change, concerned that it would distract physical medicine and rehabilitation (PM&R) from its core mission—that is, the care of people with permanent disabilities. As evidence that his concern might have been prescient, Dr Margaret Turk, in her 2008 Walter J. Zeiter lecture, noted that musculoskeletal medicine, pain management, and electrodiagnosis are now the fastest growing segments of our profession [2]. The related question of who should be providing primary care services for people with disabilities was vetted in the 1990s. In the wake of managed care and the “gate keeper” concept, Dr Bruce Gans and colleagues not only from PM&R but also from pediatrics, family practice, and internal medicine raised the following questions: Who is the most appropriate primary care physician for people with disabilities? [3] Should PM&R physicians aspire to this role? What role should other primary care specialties play in the care of people with disabilities? We now need to revisit these questions, especially in the context of health care reform, because the medical home concept for the care of patients, particularly those with complex conditions, is being re-energized [4, 5]. The question of whether PM&R physicians should assume the role of providing a medical home is becoming increasingly urgent for patients with childhood-onset disabilities who are aging out of the pediatric care system, where care coordination has been much more the norm than in the adult care system, as evidenced by specialty clinics that provide coordinated care for children with spina bifida and neuromuscular diseases [6, 7]. In short, our health care system is ill prepared to provide the type of preventive health, holistic, and primary care services needed by people with disabilities. People with disabilities have complex conditions that require coordination of care, and yet our health care system has become increasingly fragmented and poorly coordinated [8]. The number of people with disabilities is growing, and their needs will only become more pressing. They experience unequal access to health care services and significant health care disparities. We are not preparing as a profession to meet these needs. Health care professionals in general are not routinely trained to provide care for people with disabilities, and PM&R residency training programs are still the place where the most specialized training takes place [9]. It is a precarious situation and raises fundamental questions for our field about our professional responsibilities to advocate for potential solutions. These questions were posed to the following commentators: Bruce M. Gans, MD Kessler Institute for Rehabilitation Margaret Stineman, MD University of Pennsylvania School of Medicine Stuart Willick, MD, FACSM University of Utah Orthopaedic Center Elie Elovic, MD University of Utah M.Elizabeth Sandel, MD Kaiser Foundation Rehabilitation Center Current President, AAPM&R As always, we invite you to share your thoughts and opinions in Letters to the Editor. It is not unusual to hear strongly held opinions and heated debate among a group of physiatrists (especially a multigenerational group) when the question is raised of the role of PM&R in treating patients with disabling conditions versus those with musculoskeletal impairments. Dr Kirschner has posed a number of highly relevant questions that poke at the issues of care for people with disabling conditions, the social responsibility of our field, the difference between personal interests and a profession's responsibilities, and what we are obligated to do about it all. There is no doubt that our field was born with one foot in the comprehensive rehabilitation camp and the other in the physical medicine camp. Our roots seem to have condemned us to perpetuate this debate. Originally, the discussion was about treating patients with war injuries versus looking for ways to apply physical agents to human illnesses. Today, the debate could be formulated as treating patients with serious disabling conditions versus those with musculoskeletal impairments. It also could be described as the dichotomy between physicians who want to take care of inpatients (with its accompanying lifestyle) and physicians who want to work with outpatients. Some overlap of this dichotomy may be seen, but these are certainly the typical terms for a debate (or a job search, for that matter). Who should take care of people with disabling conditions? Historically, very few people in any specialty have wanted to do it. PM&R physicians came along in very small numbers and raised their hands to say, “We'll do that!” Most other physicians either were relieved that someone else was willing to step up to the challenge or believed that we were foolish to waste our time on the “hopeless who could not be cured.” As a matter of fact, when I was a medical student, I vividly recall being told by one of my neurology attending physicians that “you're too good to waste your time in rehab.” One man's meat is another man's poison, I guess. Yes, physicians in some other specialties have risen to meet the needs of certain patients with disabling conditions, and we all know who they are: pediatricians for some children with developmental or early acquired conditions, rheumatologists for patients with serious joint disease, cardiologists for some cardiac patients, geriatricians for the frail elderly, neurologists for some patients with neurologic conditions such as multiple sclerosis or stroke, and orthopedists for some patients with disabling musculoskeletal conditions. However, the care of persons with disabling conditions in each of these specialties is really a minor component of the overall specialty, practiced by a small number of individuals who, I guess, “aren't too good to waste their time at it.” Thus PM&R is really the only specialty that was “chartered” to serve this clinical and social need. I personally believe it is a triumph whenever we can attract a physician from another specialty to adopt the values of our field and choose to care for “our” patients. I know that some physiatrists are threatened by the encroachment of these alien specialists onto our turf, but, honestly, as long as they are eager to help, will do it right, and know what they do not know, I say, welcome to the party! Should PM&R assume primary care responsibility for persons with disabling conditions? Back in the 1990s, important incentives to be declared a primary care specialty seemed to be emerging. Our efforts to popularize the role a physiatrist could have in the primary care of certain patient populations was motivated by a desire to try to serve their needs and to get PM&R recognized for this effort. Our model in Detroit really was what would now be described as a medical home—a multidisciplinary team (ie, a physiatrist, internist, nurse practitioner, therapists, and case managers) organized to deliver primary care around protocols and standards of practice. It required the infrastructure of an organization (the Rehabilitation Institute of Michigan) to make it work, but work it did [1]. I believe all of those program attributes would be relevant and appropriate to replicate in today's world of medical homes and accountable care organizations, but I am not at all sure that the economic incentives to do so will strike a resonant chord with the existing potential providers (PM&R groups, multidisciplinary groups, and inpatient rehabilitation hospital-based practices). I hope they do, but only time will tell. What is the role of training programs (and also the Residency Review Committee and the American Board of PM&R)? Should they yield to the veritable flood of young physicians entering our training programs who seem to show not just strong preferences for musculoskeletal medicine but possible active aversion to inpatient rehabilitation? The short answer is “no.” I believe it is perfectly fine—in fact, of value—to have this strong flow of well-qualified physicians entering our world. In general, they have bolstered our ranks, strengthened our numbers, and added many positive dimensions to our specialty. But I believe our training programs have an obligation to preserve the essence of medical rehabilitation and to acculturate all our practitioners to embrace its values and support it, even if it is not their personal choice for practice. It is better to keep the core values of PM&R intact and treasured than to allow them to be lost in the mists of time. Thus striking a balance in the training and testing between rehabilitation and physical medicine (just like always) is still the right thing for our Board, Residency Review Committee, and programs to do. If we continue to preserve the common values (ie, function and role in society) along with the technology (eg, ventilator management of a patient who is tetraplegic and insertion of a needle under ultrasound guidance), then all should be well with the world—if: If the field as a whole continues to fight for the medical care needs of people with disabling conditions in the halls of Congress, Centers for Medicare and Medicaid Services, and the insurance companies. If the field continues to innovate to provide that care in better and more economically efficient but clinically appropriate ways. If the field advocates for research funding and conducts the needed research with those funds to make it better. If the field partners with others (eg, other specialties, hospitals, and consumer groups) to promote the notions of social justice and access to care and services for all persons with disabling conditions who need it. If our training program leaders embrace responsible ways to work with other specialties to train people well, in collaboration, and to encourage those who want to “waste” their career by taking care of persons with disabling conditions, regardless of their specialty of origin. As an organized specialty and as individual physicians, society grants us many privileges, but it expects responsible conduct that is in the best interest of all persons, not just the self-interest of our own practitioners, in return. If we put into practice the ideas I have expressed here, we will earn the right to continue to be treated as a respected profession. I woke slowly to a musty plastic odor. The pain grabbed me with my first conscious breath. The love in my mother's eyes, seen dimly through the yellowed wall of the plastic oxygen tent, calmed my heart. Above the tight bandages about my chest, the skin felt puffy, too soft and no longer like my own. I was 6 years old. My parents met a surgeon at a party where I was running about with other children. He said he could “fix my deformed chest” and make me “look more normal.” At the time he proposed this procedure, open heart surgery was not yet commonplace. He told my mother that he had held my beating heart in his hands to move it under my sternum in preparation for cutting away the deformed costal cartilages on the left side of my sternum. After the procedure, my pigeon breast deformity was indeed diminished, but although I looked more normal, I never ran again. I did not have the breath. I sank when I tried to swim. As a child, I wished the surgeons would stop trying to fix me with procedure after procedure but instead use their medical knowledge to empower my function for full participation in life. Later in my life, PM&R and vocational rehabilitation colleagues did empower me and continue to do so. Rather than fixing or curing they are me and be many my These the of more highly the knowledge of these practitioners and their to the world are in of the first of my PM&R I have with and concern as PM&R increasingly to sports rehabilitation and musculoskeletal and away from the care of people with complex disabilities. some of the away from the care of people with complex disabilities to a between of and the of providing in rehabilitation from [1]. responsible physicians to of the of are and can be in a short In a and physical and a care for a with and who on is and is more time It is even to the multiple medical support needs of people with complex disabilities the of on too many young PM&R physicians may be preparing to care for people by musculoskeletal too few may be preparing to people with complex or acquired disabilities. and in the that the of rehabilitation services has been to have an on the of persons being in a of can the of patients with disabilities or diseases to become in their homes and the concept of comprehensive medical care the of these by between care in rehabilitation and and the of PM&R physicians from the care of people with complex disabilities, I to research in the hope of evidence to support comprehensive rehabilitation medicine has PM&R from its of for people with complex conditions and disabilities for other specialties have no This is at the heart of our specialty, it from all years of and the fastest growing of the and have the of As the will into in the and to provide support for people with disabilities. The of these is the most issue health care existing PM&R is to medicine of management on function and of life. The medical home model of health care in health care medical home primary care, patient management, and for between patients and These are for the of PM&R in or to for people function and to of Dr Kirschner questions about the of can we PM&R to the of physiatrists from the care of those with complex disabilities? The answer may be but it also is related to and the that PM&R is to the needs of our aging the medical home concept, will be and economic in access to health care services and health of people with disabilities as to and the of medical homes to their needs might be one to attract the needed to support the of their care needs. coordination primary care will require PM&R physicians to expand their knowledge and the of their practice to the where they can general medical as well as the to people with disabilities. PM&R physicians will need to practice with primary care providers through multidisciplinary today's PM&R is to the numbers of people with disabilities the The of PM&R with primary care and the of training for and management could primary care the of primary care physicians to the number of people with disabilities. We Dr Kirschner and PM&R for this very important We believe that the core of PM&R is to the and of of our patients. We to an to in as he or the has been a in the of injuries and that physiatrists and a in the by This has in other specialties as is a of the of knowledge in the and In to function and of for patients with and rehabilitation such as stroke, multiple and physiatrists have out the and in important such as cardiac and This of and is a for a young and have specialized on the needs of the populations they those who were treating individuals with that they could provide better care for their patients if they were at treating and treating have in treating patients with or that they could provide better care for their patients if they were at who were treating patients with injuries that they could provide better care for their patients if they were in and we in this field as physiatrists who were treating people with a of rehabilitation that they could provide better care for their patients if they and musculoskeletal Some of the leaders of our field, even those who have been to promote the of musculoskeletal have recognized the need for physiatrists who patients with complex disabilities to be in treating their musculoskeletal We recall Henry the at for expressed about for the to on patients on the rehabilitation We recall that Walter and who led the Department of Rehabilitation Medicine at the University of for long expressed the Dr certainly Dr about training young physiatrists to practice musculoskeletal at the time, Dr was a and of musculoskeletal medicine who recognized the between the neurologic and musculoskeletal At this time, in our own more than of the patients on the inpatient rehabilitation have some type of musculoskeletal we have a patient with multiple who a in the We have a patient with and and another patient has an on the right side and of the on the left These of patients are typical for many inpatient rehabilitation our obligation as rehabilitation our and are trained to these of our complex disabilities. We believe that PM&R training programs have One is to medical about the and of our is to medical to to the function and of of their patients no matter what specialty they We certainly believe that it is of to train physicians in the care of patients with complex disabilities. However, this need not be and not be at the of training physicians (and in the care of musculoskeletal the these are The neurologic and musculoskeletal are of neurologic and musculoskeletal rehabilitation is rehabilitation physicians will provide better care for their patients if they have a in musculoskeletal musculoskeletal rehabilitation physicians will provide better care for their patients if they of neuromuscular many of the and specialists who much of their efforts issues of and PM&R physicians their efforts to that the has a In of this it is that PM&R training programs should provide the of training the of our If we do a good job of to medical physicians, and other the of for people with complex disabilities, in to those with complex injuries and then neurologic and musculoskeletal rehabilitation specialists will and each If we training in one or the then our patients and the field will PM&R physicians have had many medical practice after at in the Some of us have to become taking care of all of patients we can our of practice. PM&R physicians who practice as are in or Some of us become and on of practice interest and by but also because of our need to train an in our Some of us are or for physiatrists in or of in adult and pediatric have to provide comprehensive and coordinated care for patients with complex or other conditions the context of inpatient and as a of our practice, we of other The is that our field has that if a physiatrist to just on medicine or an practice, he or has that after This situation is not the for other specialties of medicine, for or in a physician can become a with few if any other practice As long as are can continue with a of practice, but also continue to be specialty This to choose among a of for specialty or practice has the field of PM&R to physical medicine and rehabilitation The is that physiatrists are now many more patient populations than was in In some health physiatrists practice in because they are trained and to provide care the of practice of other specialties, such as or We might question whether this has been more to the of our specialty than to our patients in those patients with complex disabilities who now on a of residency to serve their health care needs. If we take a of the concept of we might that all of the patients we serve have that can from our We to and also and disabling in our of practice. and is is as we by an issue of PM&R to the [1]. As we the of health care that function or or than curing or disease, at most of the time. The is that physiatrists have such a of practice that primary care providers and specialists who this their patients to of this is the of the field of physicians, may not who we are or what care we such of practice. have been of our in will continue to our specialty, but the incentives are In the of care that in patient or will be care [2]. We can continue the we have been on by many for practice, but we our to serve patients with disabling conditions by and our care and by We in a of and care and related for the populations we those with and pain and those with complex disabilities. these we will physician and patient through efficient and of we can attract more of our into rehabilitation medicine if these of care are We need to the concept of the medical home as a that we might our work in PM&R for certain As by in a article on a of is that as a medical home more than providing primary care some specialists who believe they as primary care physicians for some patients might want to the to have their serve as medical homes for these patients of specialty that of that their physicians serve as primary care physicians for or of their patients If the medical home is not as a with primary care, then I believe that the would This raises a question of whether a model with primary care and specialty care might be a better model for certain populations and that might be the case for Most of the populations we have conditions and need coordinated most of our would from the in of the medical for between physician and health in a to patients and and care As we move into the of health care reform, we need to of care for all the populations we These populations will those that have such as pain but also those with such as that is, those who need the care that we as physiatrists are trained to As we have the concept of We need to our to it. We do not have to our to one but we do need to of care to serve issues and are the most a we are about to our services to provide care to a of patient of us and each of our or about the numbers of patients we can human We are not our to the needs. with family physicians, and other primary care providers will be to of with and surgeons in and also will to of care these will not be medical home they will support the of coordinated care to meet the health care needs of patients with complex disabling conditions. As out by the American of with particularly complex or conditions may require a team to serve as the of care other services as appropriate PM&R physicians should be the specialists who the that provide care to patients with complex disabling conditions and and care that is in and led by PM&R physicians, we can our care to many populations and the