THE PULMONARY WELLNESS SUPPORT GROUP

PULMONARY WELLNESS SUPPORT GROUPS

Rev. 1.0 Copyright, 1997 by Bill Horden

My concept of a "Pulmonary Wellness Support Group" is a long-term program of therapy and/or rehabilitation for patients with chronic pulmonary diseases, whether diagnosed as asthma, emphysema, chronic bronchitis, "COPD," or any of some 150 diseases labeled "Interstitial Lung Diseases." It is a program that is appropriate for virtually all pulmonary patients at any stage of their disease, whether at onset, pre- or post-surgery, or so-called "end stage."

The objectives of such a program are twofold: 1) to improve the patients’ pulmonary and general health and, thereby, to reduce hospital admissions, and; 2) to improve the quality of the patients’ lives. It achieves its objectives by providing therapeutic exercise and education in a group environment, thereby increasing physical stamina, restoring some lost functions and slowing the progression of disease. It will be pursued, at the appropriate level, for many years (just as most patients’ medications will be followed for life).

Helping pulmonary patients regain lost functions through aggressive rehabilitation is certainly not a new or novel concept: there is ample evidence that such programs improve patients’ strength, endurance, and general health. The idea of support groups isn’t new, either. In fact, the American College of Chest Physicians addressed the need to treat both "the physio and the psychopathology of pulmonary disease" and to attempt to "return the patient to the highest possible functional capacity," in its 1974 definition of pulmonary rehabilitation.

What is new in the proposed program is the combining of the physical/pulmonary rehabilitation activity with the fostering of a stable "peer-support" group, and the continuation of both physical and psychological therapies for a lengthy, unspecified period, just as many patients are kept on maintenance drugs for life.

This program must be considered a "wellness program," rather than simply a "rehab program," because it places equal weight on the physical and emotional aspects of treating obstructive pulmonary diseases and nurtures a stable group environment that can encourage the development of strong, lasting bonds between patients. Such bonds help each patient to better deal with the counter-productive emotions (depression, fear, anger, resentment, e.g.) common to the loss of certain functions, the radical changes in life-style, disappointment stemming from earlier "treatments," and the expectation of further incapacitation. As progress is made in therapy, these bonds encourage patient optimism and the expenditure of the energy and emotion so essential to self-management of the patients’ respective diseases. [Remember that, from the very beginning of a rehab program, a chronically ill patient, often unable to walk fifty feet without resting to catch his breath, is asked to believe that MORE exercise is going to make him or her feel better. "You gotta be crazy!"]

Frequent, regular, individualized rehabilitation sessions encourage one-on-one communication between patient and therapist. Given a few sessions, and interface with others already in rehab, the patient will show a dramatic improvement in confidence, morale, and motivation: treatment is then optimally effective. (A secondary, often equally significant, benefit derives from the continuous monitoring of patient progress, in the form of early discovery of developing complications, allowing prompt intercession.)

In the program I envision, the patient’s weight, blood pressure, peak-flow reading, and pulse-oximeter values (at rest and while exercising) would be recorded weekly, along with physical exercise performance data and the patient’s subjective report of condition and well-being. These data would be reported to the referring physician monthly, with appropriate recommendations, and serve, with hospital or emergency room admissions, as the basis for periodic outcome reports.

The program would, of course, be supervised by a physician specializing in pulmonary disease, but administered by physical and respiratory therapists, assigning one therapist for every four to eight patients. Sessions would be at least two hours long, divided between physical and respiratory therapy according to individual patient needs and instructions from referring physicians. The former typically involves graduated-time-and-difficulty work on stationary bicycles, treadmills, upper-body ergonometers, stair-climbers, and/or weights. Respiratory therapy would include a stethoscopic examination of respiratory function, instrumented observation of exercise performance, instruction and practice in pursed-lip and diaphragmatic breathing; proper use of inhalers, peak-flow meters, and oxygen equipment; review of medications, diet, and daily living routine. Fifteen to thirty minutes would be reserved for support group interaction via question and answer sessions and patients’ shared experiences. Periodic teaching sessions would be conducted by such related specialists as Occupational Therapists, Dietitians, Pharmacists, Psychologists, etc.

I am not a medical practitioner and have no formal training in medicine, physical therapy, nor pulmonary rehabilitation, but I am a long-term pulmonary patient and I believe the proposed wellness program would cost less than many patients’ maintenance drugs and/or oxygen supply and, by improving and maintaining the patient’s strength, endurance, general well-being, and independence, would quickly prove to be cost-effective.

The opinions expressed here are based on my personal experience as a long-term sufferer of COPD, participation in the Respiratory Wellness Program of St. Jude Medical Center, Fullerton, CA; participation in the Pulmonary Rehabilitation Program at Santa Rosa Outpatient Rehabilitation Center, San Antonio, TX; consultation with physicians and therapists specializing in pulmonary disease; research into respiratory rehabilitation programs offered at medical centers across the continent, and; personal conversations and correspondence with, and observations of, numerous fellow-patients. [For example, a recent report from the National Jewish Medical and Research Center in Denver, CO, states that two groups of asthma patients who completed a six-month "Disease-Specific Case Management" program required 50 to 72 percent fewer hospitalizations, 61 to 77 percent fewer emergency room visits, and reported reductions in work/school days lost (by the patient or his care-giver) of 68 to 81 percent.]

My experience and observation leads me to two conclusions: 1) virtually all patients with chronic pulmonary disease can benefit from an aggressive treatment program that includes pulmonary rehab, and;

2) the long-term success of any pulmonary rehab program depends as much (or more) upon its dealing with the psychological component of the disease as upon treatment of the physical side.

In short, I believe that most of us pulmonary patients would like a few more years of relatively active life and, given reasonable hope that it’s possible, will spend the time, perform the work, and practice the discipline necessary to achieve it. In the absence of such hope, however, we’re much more likely to just give up, vegetate, and wait for the inevitable, ugly "end."

I also believe that the failure of the medical specialists to establish and maintain programs of pulmonary wellness has doomed most pulmonary patients to just such an existence of isolation and a prolonged (and inordinately expensive) terminal illness. Such a passive (uncaring?) approach by the "typical" pulmonologist and most "third-party payors" places the burden of ministering to these patients upon the Family Practitioner or Internist, a role he or she is professionally and financially unable to adequately perform.

In the past, I have been careful to caution patients against starting exercise routines or changing medications without prior consultation with their doctor, and I will continue to do so, but I sometimes wonder whether the potential dangers of lay-guidance aren’t preferable to the absence of results many of us have realized from our doctor’s nonfeasance.

Shouldn’t this thought raise a few interesting points of professional ethics and legal responsibilities for the doctors, insurers, and other health providers to consider?

Interested parties are asked to comment. You may contact the author at:

7 Whitechurch Lane

San Antonio, TX 78257

E-mail SOBnSA@aol.com

Back to Olivija's Page