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Debra Glazer, PT, MPH
Among the recent developments in healthcare are shorter inpatient hospital stays, limited personal resources, and increasing health care costs. "There is a need for long term psychosocial treatment, rehabilitation and support that addresses quality of life, functional skills and accessing environmental supports." So, what becomes of the individual after they have completed their approved course in the medical system and rehabilitation has ended according to their insurance benefits? Specifically, what happens to the individual after a life changing medical event occurs; or to the individual who has ongoing multiple medical or chronic conditions that require extended care? Does the existing medical system or current array of rehabilitation services assist individuals with reentering their community? There are a number of factors that contribute to successful community integration and many that impede this transition. This paper will highlight a few of these barriers including the lack of an individualized rehabilitation system, the initial hospitalization process, and the current medical model of care.
As patients and their families anticipate being discharged from the medical system, many questions arise: What will come next? How will they pay for all of the care with limited resources? How will members in our peer group react and treat us? After discharge, individuals with a new disability often experience "loneliness, over-dependence on service providers and families, and discomfort being around others." Often patients and families are overwhelmed with the recovery process and are still grieving for life as they once knew it. Factors such as: one's coping techniques prior to their injury, opinions on personal responsibility, prior medical background, insurance plan, and whether or not the individual has a good personal support network of friends, and family impact the success of a full return to community life.
Unfortunately, the rehabilitation system as it is set up today does not allow practitioners to account for individual differences. Too often, rehabilitation programs are structured in such a way to work against this process of recovery. These programs tend to have rigid guidelines for acceptance. They tend to have linear program designs in which a person must enter at point "A" and move through a series of consecutive steps to arrive at point "B".
This kind of system does not allow for individuals to "try and fail, and try again", which is necessary for ultimate recovery and successful re-entry into one's community.
In addition to an expanded and more individualized rehabilitation system, what else is needed to better prepare persons for reentering the community? An improved understanding of an individual's initial hospital course is necessary to provide needed insight regarding the direct affect that this experience has on the person's ultimate recovery. The majority of one's hospital stay in today's healthcare climate is devoted to diagnosis, reduction of symptoms, crisis management, and discharge planning. There is very little time dedicated to true rehabilitation services or psychological support. Nurses are being asked to do more and more and often have less time to provide a friendly ear to listen to their patient's fears and concerns. Social workers are often only available for acute crisis management (i.e., those who are suicidal) and usually have such large caseloads that they themselves are often overwhelmed with the demand for their services. All of the recent changes have an impact on preparing the person for what comes next. Offering support services to newly disabled individuals that help give them some sense of control in an out of control situation is not only therapeutic, but also a necessary part of the healing process. Unfortunately, in the current ambiance of cost-cutting and managed care, this often is missing in most rehabilitation programs.
Preparing a person for the long road of rehabilitation requires understanding and support from the medical community. True, rehabilitation focuses on restoration and the enhancement of coping skills, improving one's quality of life, and the expectation of recovery. In standard rehabilitation programs, the role of the healthcare professional is actually de-emphasized and the burden is shifted to the individual in favor of personal autonomy and responsibility. A common theme in hospital settings these days are rehabilitation standards of care or "protocols". These "road maps" help create a multidisciplinary, collaborative treatment plan that are often helpful to the healthcare professional, but too often "dismiss individual preferences, needs, and goals."
Another important factor in preparing a person for rehabilitation and community re-entry is the ability of healthcare providers to answer questions about available community services. Many healthcare professionals, especially those in the hospital setting, are unaware of what resources are available in the community and are often unaware of what barriers their patients may face after they are discharged back into their communities. In a study titled, "Barriers to Access: Frustrations of People Who Use a Wheelchair for Full-Time Mobility," all of the participants had feelings of frustration concerning access, independence, and attitudes of others toward people with disabilities, including medical professionals. One participant in the study stated, "I don't ever remember anybody talking with me about the problem of being in a wheelchair and getting around." While in the hospital, the priority is obviously to medically stabilize the patient, but healthcare professionals often miss the opportunity to provide success stories of previous patients that have gone on to live successful lives in the community. These stories are critical in creating hope in patients during a very difficult phase of their recovery.
In looking past the initial hospitalization, another suggested improvement is identifying how our current medical model of care prevents us from looking at the individual first and the disease process second. "This disease model is limited in that many health conditions can't be traced to a specific disease, and the same disease could have different symptoms in different patients. Health care providers, including rehabilitation professionals, are reluctant to treat symptoms without a diagnostic label." The reality is that in the current medical system, reimbursement incentives and one's individual insurance plan often dictate what type of treatment the person will receive. If services do not correlate with the specified diagnostic code, the provider risks not being reimbursed.
Dr. Mary Tinetti, an international expert on the effects of falls in the elderly and on home-based rehabilitation for older adults, proposed a new alternative model of care. She is encouraging health care providers to look at the "complex interaction among genetic, lifestyle, cognitive, environmental, cultural, and psychosocial factors when diagnosing a patient". She notes that lifestyle-related issues such as exercise and diet clearly play a major role in the treatment plan for newly disabled individuals.
This alternative model of care would require a change in the current reimbursement system. Providing education about necessary lifestyle changes is not enough to keep an individual enrolled in a skilled rehabilitation program, and therefore many patients re-enter the community prematurely. The majority of rehabilitation professionals are extremely strong patient advocates, but are often faced with conflicting pressures about productivity, reimbursement from third party payers, and detailed regulations by agencies such as Medicare, JCAHO, HCFA, and OSHA. These governing bodies serve as watchdogs to the medical industry to prevent harm and misconduct to the patients, as well as to expose fraudulent health care providers. More often than not, individuals who do not clearly fit into the medical model dictated by these existing organizations or who cannot advocate for themselves often fall through the cracks of this system. This system was designed to work well for the patient with straightforward diagnoses such as a hip fracture. These patients usually move smoothly through our system. However, the current system does not work as well with patients who have multiple issues such as a patient with a hip fracture who is also paraplegic.
Physical therapists as well as other rehabilitation professionals are constantly forced to discharge patients from the medical system because the individuals no longer meet the stringent, and rigid criteria of these governing bodies or reimbursement organizations. Discharging patients under these circumstances does not adequately reflect whether or not the patient has met their personal goals. Instead, it reflects a model of care dictating specific treatment based on diagnoses instead of allowing the individual and health care professional to make these decisions based on the actual needs and wishes of the patient.
An example of this disconnect is seen with the need to educate and inform patients about existing exercise and recreational programs within the community. "Health promotion activities are critical for people with disabilities who are prone to have a more sedentary lifestyle and have a tendency for under, over, or misuse of various muscle groups." Enrolling in some sort of exercise program or recreational activity is just as important for some patients leaving the medical system as taking their prescribed daily medication. The need of patients to participate in fitness programs is often overlooked by the current medical model, especially for individuals with specific disabilities. "Often exercise regimens are recommended for discharged patients as a way to maintain gains during treatment and not as an avenue of fitness." The majority of patients leave the medical system with few resources and little guidance about what recreational programs and community services are available within their community and are left to research available programs on their own. This trend is unfortunate because "participating in recreation activities has been found to be an important factor in successful community adjustment."
"The laws have paved the way for people with disabilities to live, learn, work, and recreate in settings alongside peers without disabilities," but the links between the traditional medical system, rehabilitation services and the community are fragmented or have yet to be built at all. Ultimately, we as rehab professionals provide a strong foundation and necessary structure to our patient's lives when everything seems to be out of control. We offer guidance and assist them through the initial phase of recovery, but often we do not provide effective connections that lead our patients back to life as unique and successful individuals within their own communities.