Physical, Psychosocial, and Vocational Rehabilitation of Patients Undergoing Long-Term Dialysis

Background

Concern for rehabilitation has a long history in kidney failure. Advocates for Medicare benefits for dialysis and transplantation before the 1972 legislation made public assurances of the restored productivity of successfully treated patients, predicting that benefits provided would be returned in part by taxes paid by reemployed patients. Such enthusiasm was appropriate to the patients of that era of severely limited resources: each was carefully reviewed and accepted because of their ability to resume an active life with correction of uremia. Nephrologists reporting these results to encourage funding for dialysis and transplantation did not project what would ensue with open enrollment of all comers into kidney replacement therapy.

After implementation of the Medicare End-Stage Renal Disease (ESRD) Program in 1973, the dialysis population rapidly expanded—and just as rapidly ceased to be a uniform, motivated, youthful population with little comorbidity. As well, return to productive employment ceased to be the norm. Because the only definition of rehabilitation used was vocational rehabilitation, there was a widely perceived failure of the ESRD Program to fulfill its promise. Many in Congress and elsewhere felt betrayed. Nephrologists were embarrassed, and rehabilitation dropped from their vocabulary.

In place of rehabilitation, the focus turned to mortality and hospitalization (which also got worse with older, sicker patients)—and to the development of improved technology. By the time the U.S. Renal Data System (USRDS) was developed, using the Medicare database to shine a unique spotlight on the care of patients with kidney replacement therapy, the emphasis had changed from the large numbers of people who survived kidney failure with treatment to the number of dialysis patients who had short survival, poor health, or both.

Redefining Rehabilitation

The initial definition of rehabilitation addressed only the restoration of gainful employment, partly because of its potential economic consequences and partly because it was hard data easily used for assessment of outcome. It was widely remarked that in the absence of employment as the standard, no one knew how to define rehabilitation.

Despite those remarks, other medical communities recognized that there are also psychosocial rehabilitation and physical rehabilitation in addition to vocational rehabilitation. Efforts to improve and monitor outcomes in those areas were often used by general internists, physiatrists, social workers, exercise therapists, and others. Cardiac rehabilitation has become nearly universal after cardiac injury or surgery.

The nephrology community has many clinicians who always sought to understand the lifestyle and problems of their patients and to help them cope with and improve their lives, but this was an individual effort—with no systematic structure, no standards or guidelines, and no national or regional recognition. The results were reported as anecdotes of fulfilling experiences for professionals, as well as successes for patients—but not as clinical trials in medical journals. The impact of these experiences was quite limited.

In 1993, with support from Amgen, the Life Options program was started, and the Life Options Rehabilitation Advisory Council (LORAC), composed of experts in dialysis care and psychosocial research, was established to lead it. The Council's members set out to define an orderly structure for rehabilitation efforts that would include physical, psychosocial, and vocational rehabilitation arenas and that would provide guidance to clinicians and facilities undertaking it. This program is not the only such effort, but the organization of ideas and the subsequently reported successful programs make it an easy model for application to most dialysis treatment sites, as well as to other chronic disease settings.

Life Options begins with the “five Es” of rehabilitation for kidney disease ( Table 61.1 ). The approach starts with encouragement , believing that the person can do better and that everyone involved will be gratified by the accomplishment, gently (or forcefully, if necessary) stimulating the patient to make an effort to be healthier. The evaluation that individualizes the approach can be included in the clinical planning for each patient, required by regulations and routinely documented. This includes education, work history, former and recent activity levels, physical capacity, social support, interests and hobbies, and hopes for the future. Patients need to know that this is happening, need to be informed, and need to make some choices in their plan. Interval reevaluation is important both to adjust the program and provide everyone involved with a means of measuring what has been accomplished. Recognition of even small steps forward can mean a great deal. Setting a goal individualized to each patient's needs and capacities in clear and measurable terms and noting milestones as each is reached will ensure that all participants are rewarded.

Education begins with each patient learning about kidney failure and the dialysis regimen; follows with health improvement goals, functional expectations, and exercise methods; and continues through specific learning to enable progress toward specific goals. Self-management of this regimen and direction is encouraged. Subsequently, this may include outside agencies or individuals. Some patients may not progress past the simplest grasp of their situation, but every patient needs enough knowledge to minimize fear of their disease and its treatment and lessen dependence on staff and family. The opportunity to learn about subjects of interest may activate patients.

Almost every patient needs exercise because most undergo significant physical deconditioning with loss of capacity and endurance as the disease progresses. The “spiral of deconditioning” is quickly recognized by most patients and clinicians as accurate. Loss of vigor is so gradual that the patient often does not recognize it. Exercises to reverse this decline need to be light but regular, composed of repetitions capable of being counted so that there will be a tangible reward through achieving higher counts, which reveals improved physical capacity. Most patients can train themselves to physical capacity near premorbid levels. Work using this approach has shown that patients’ peak oxygen uptake improves after successful physical training, an objective measure of improved functioning.

Stationary bicycles, treadmills, and other exercise devices are effective and have been installed in some dialysis facilities. Some are used before dialysis; others have been adapted for use during the usually boring time spent on dialysis. Exercises during dialysis are usually well tolerated without disrupting the procedure.

Everyday objects may also be used for exercise. A chair can be used for bracing during movement or seated leg exercises. Canned goods can be used as dumbbells. Large rubber bands (Therabands) are used as a resistance to pull against. A sandbag can serve as a flexible weight that can be held on a foot to exercise a leg or in a hand to exercise a shoulder. Walking is always a good exercise for those who can. Walking indoors works when weather or neighborhoods discourage going outside. A few steps up and down the stairs are easy to repeat and count, with numbers increasing as exercise builds endurance.

Most of these simple actions build strength for activities of daily living. Periodic reassessment provides the patient with a satisfying reinforcement of accomplishment. It is important to promote expectations of well-being sufficient for continued productive living and independence and then to demonstrate that ability. Counting repetitions is simple. When more quantitative results are sought, the standard 6-minute walk, stand-sit-stand test, or measured grip strength may be used. Loss of confidence may be as limiting as the loss of physical strength. Repeated reinforcement of progress through objective measurements can rebuild confidence.

The goal of employment is not realistic for most dialysis patients. Published reports confirm that those already employed can often retain employment or return to it promptly with less difficulty than trying to place an individual in a new job. Success is also related to education level. Vocational rehabilitation agencies and private employment companies can provide evaluations, arrange some types of training, and make potential employment contacts. The enthusiasm for such services must often come from the patient or the dialysis staff assisting the patient. Vocational rehabilitation offices are more accustomed to amputees, persons impaired in vision or hearing, or others with more obvious physical deficiencies, and some workers there may be ill at ease with a dialysis patient's problems. The pool of those who want to work or who can realistically become employable may be small, but for those few, even a part-time job can be a great advantage. Working produces income and provides tangible evidence of recognition and personal worth, sets a framework for living through a regular schedule, and helps maintain physical capacity.

A survey of dialysis patients 18 to 55 years old found that more than 30% believed themselves able to work, but fewer than 20% were able to be employed. The clinical team must realize the potential for employment and support the effort if patients are to succeed. In addition, a number of patients are known to work part time or “off the books” to avoid loss of disability benefits, which compete well with what many can earn.

Other life-enhancing activities are more widely available than returning to employment. The mean age of dialysis patients is over 60 years, and many are beyond employability. However, some of them can discover useful and rewarding roles as volunteers or as members of other community activities that engage them in life outside their home, distracting them from focusing on health problems. These activities meet a broad definition of rehabilitation. Not just the elderly but also the majority of dialysis patients can improve their physical, social, and intellectual functioning through education (in living with dialysis, in crafts, in history, arts, or specific interests) and through exercise during, before, or after dialysis in an entertaining way.

With encouragement, most patients can find ways to incorporate simple physical conditioning into daily activities. Encouragement from many sources (family, staff, volunteers, other patients, and so on) underlies the patient's acceptance and promotion of their own health. The clinical team's evaluation of results and feedback to the patient and family of the findings can reinforce the rewards of self-improvement efforts on a number of levels. All of these can aid in establishing groups for shared activity, increasing social interaction, and avoiding isolation.

Every practicing nephrologist can relate stories of individual patients who are not responsive to any effort at motivation, whose behavior and lifestyle frustrate everyone. Positive support for good habits and visible recognition of self-improvement achieved by other patients help to prevent bad habits from becoming contagious. These failures do not merit emphasis but sometimes can be seen as an object lesson for other patients who would avoid their fate. Expecting effective rehabilitation will not always succeed, but expecting failure fulfills itself easily. For clinicians, the success of some patients can make tolerable the frustration caused by other individuals.