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.

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?

Copyright, 1997, all rights reserved. Permission to reprint this article may be granted upon written request and subject to certain conditions and restrictions.

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

Bill Horden
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If you are interested in considering another's viewpoint on this subject, click on Welcome to the LungNet and read "Psychological Consequences of Respiratory Diseases" and the need for patient support groups, published by the Australian Lung Foundation.

The following article is taken from the column of Pieter Walker, writing for the December, 1997, issue of LungNet National News, published by the Australian Lung Foundation:

Your own thoughts about how you feel can contribute significantly to your condition and escalation of your symptoms. Negative or false thoughts can make a situation much more stressful and difficult to cope with. Sometimes our thoughts can run away from us and a situation you could normally handle quite easily can become difficult to deal with.

In fact, it is our perceptions which determine how stressful a situation is. These perceptions are based on previous experience, what we have learned from others, how we expect to cope with the current situation. For example, if a deep-sea diver and someone who could not swim were faced with the prospect of jumping into the deep end of a swimming pool, they would have two completely different reactions, though the situation is the same.

Worry and panic does nothing too alleviate the problem, it only makes things worse. Excess stress can cloud your thoughts and judgement, make decision making more difficult, cause you to lose sleep and may cause an increase in (severity of) physical symptoms.

POSITIVE SELF TALK: Self Talk is that little voice that we all have inside our heads that we usually listen to. It is the way people describe and interpret themselves, others, and the world. When self talk is accurate a reasonable, negative emotions are wee controlled. When self talk is distorted, negative emotions become increasingly distressing.

An example of this distortion can be a negative statement such as, "Of course I’m depressed, if you had my problems, you would be, too. Life is not worth living if I am sick."

Some people feel that depression is a side effect of their medical condition and that their well being is the only thing which determines their happiness. Does this mean that all disabled or chronically ill people in the world should be depressed and miserable because they are disabled in some way?

The answer to this is NO. I am sure you can think of someone who is disabled in some way, but is still a happy and positive person to live with.

Tips to enhance your Positive Self Talk:

• Think about all the aspects of life that make you happy: e.g., family, friends, reading, socialising, eating a nice meal, etc.
• Find out what others in your situation have done to adjust and cope and try to use some of these strategies. A support group can really help with this.
• Examine other times in your life when you have had to cope with adversity and managed to cope and achieve happiness.
• List your problems: then brainstorm and list as many solutions as possible (choose the solution with the best possibility of working and the least cost).

The following is reproduced by request; it was written to my many friends in the online support group initiated by Paul Marks:

Subj: When I Wanna Go Home
Date: 02/14/98
To: (Editorial Note-This was first sent to a COPD Email support list, and to Paul Marks personally)

"Home," I read somewhere, is "where, when you go there, they hafta let you in."

And I've decided it's kinda nice, for me, to have this place as a home.

It's nice, even when Uncle Bert is ranting over his latest pet political peeve and trashing the Harding administration, and it's nice to see Cousin Sallie in good health, even though she just sits by the hearth and the only sound she makes is the clatter of her knitting needles, going 90 miles per hour hour.

It's nice to sit down to dinner here, even though Aunt Daisy has made roast parsnips for the twelfth straight day and the roast beef is so rare it turns my queasy stomach every time Sammie serves another slice (even though I managed to get the well-done end-cut for myself). Even when the talk turns to Great-aunt Bertie's funeral, it's not such a bad feeling, because there's always memories of the good times we had together, and recollections of how she was always there to help, if you needed her. Even if it was just a shoulder to cry on, hers were always there.

In fact, if anyone ever needed anything, all he had to do was ask, and he found someone to help. Some might be too busy, but someone would always make time.

There was always a generous supply of those rarest of commodities; unconditional acceptance and forgiveness.

And anybody who wanted to help was encouraged to do so, even though ol' Uncle Henry, from his rocker, could always tell you how to do it better and, once you were done, could find at least three things wrong with it, just before he asked what you were goin' to do for him, next.

I have to smile at some, and a few can bring a tear to my eyes, but I really love my family and am proud to be one of them.

Bill Horden