It isn't sympathy we seek, and it isn't charity. It’s understanding.

It is your understanding that it is simply too painful for us to speak of our fear, for both the present and the future, and that is our pride that mutes our voices when we are reduced to asking assistance from those who once looked to us for their help.

It’s the understanding that "it really can be that bad," and that we "really do" need "all those" medicines, and that it is much more frustrating to be unable to keep up the pace than it could ever be to have to wait for us to catch up.

It’s understanding that we need to find useful things to do, despite our limitations; that we don't want to be a burden, but neither do we want to be alone, and; we wish desperately to once again dance with our spouse, or grandchild (or our sons or daughters).

It’s having someone understand how difficult it is, when we are alone, to really care that we should fix nutritious meals, vacuum the house, bathe regularly, or get a haircut.

It’s knowing the frustration of wanting a "normal" life, with no hope that it is ever again to be, and it doesn't help a bit that some of us find our faith sorely tested.

Nor does it make it any easier to know that the medications and techniques that could afford significant relief are readily at hand but have been withheld.

It would seem that we are expected to stoically accept the status quo of chronic illness and to accept a laissez faire brand of medicine administered in an atmosphere of callous disregard for the emotional effect of such malpractice upon either the patient or his family. (And "malpractice" it is, when a doctor either withholds available treatment or presumes to treat in a field where he is not qualified.)

If denying the best treatment to the patient weren't enough, there is no rational way to justify the cost of inaction to employers, public schools, hospitals, third-party payors, or society in general. The way we treat pulmonary patients just doesn't make good sense.

There is more than ample evidence, in scores of outcome reports, to conclusively demonstrate the success of multidisciplinary pulmonary rehabilitation programs. The vast majority of patients show marked improvement in pulmonary function and endurance while learning better nutrition, the proper use of medications and oxygen, and the finesses of daily living and energy conservation. But, of equal importance, they learn how to manage their diseases, and most form close friendships with other patients, exchanging much-needed emotional support.

As the patient learns to better manage his or her particular disease, he gets more comfortable with his symptoms, knows better how to assess their severity, and is better able to adjust his medications. With this knowledge comes a sense of regaining some control over his life, a significant reduction of stress, fewer visits to the emergency room, and fewer hospitalizations, in general.

The hospitals and third-party payors find they are able to give better service (i.e., deliver better medicine) and lower their costs at the same time.

Employers have both patients and patient-care-givers on their payrolls. The same multidisciplinary pulmonary rehabilitation programs (sometimes called "pulmonary wellness programs") are so effective that they dramatically ease the patient’s symptoms and reduce hospital and sick-leave-time. The absenteeism rates of both patient-employees and care-giver-employees are substantially reduced or eliminated. In short order, the employer’s benefit costs are reduced, as well.

The case for schools is really simple: virtually all public schools get a per diem stipend from State and/or Federal government programs (i.e., a certain number of dollars per student, per day) when students are in school. When a student is absent, they get nothing.

The estimates of functionally impaired pulmonary patients range from ten to forty million (in the United States) and the number of fully-equipped rehab programs is probably fewer than two hundred. Their distribution makes no sense, either: there are two excellent programs in Boise, ID (pop. 130,000), and one in Kerrville, TX (pop. 27,500), but only one in San Antonio, TX (pop. 1,000,000), and three in Orange County, CA (pop. 2,500,000)

When I seek reason for these dichotomies, I get nothing but finger-pointing: the doctor can't refer to a program that doesn't exist; the hospital can't get reimbursed by third-party payors; pulmonary therapists are powerless to make policy, and; HMO’s and insurers must see outcome reports that prove the treatment works. (It is, however, a fact that most of the rehabilitation centers in existence are accredited and receive most of their income from Medicare, HMOs, and other third-party payors, so that excuse isn't valid.)

Of course, the consumer (aka, "the patient") knows so little about his body, or the medications and treatments that should be available, that he doesn't realize he’s being short-changed. He actually believes his doctor when he says, "COPD is untreatable," or, "Here, suck on this inhaler; it'll help."

I am increasingly persuaded that much of the fault lies squarely on the shoulders of the "Primary Care Provider" (formerly known as the Family Doctor) because too many of them were trained to deal only with acute disease, and are conditioned to believe that the chronic ailment is more an inconvenience than a crippling malady. (If you should have "an episode" of significant proportions, they'll send you to the emergency room, post haste, but don't except much attention if you are "just" having another attack of asthma or bronchitis. Don't bother complaining about sleeplessness, fatigue, indigestion, phlebitis, anxiety, depression, etc., unless you want more and more medications.)

My personal correspondence files contain several hundred accounts of critically ill COPD/emphysema patients, some already on full-time home-oxygen, who have never seen a pulmonologist or had a pulmonary function test. I know, personally, of asthma patients who have been in the emergency room four, five, and six times a year, who have never been referred to a pulmonologist and who know nothing of pursed-lip breathing, or peak-flow meters. And I know, from personal experience, what it’s like to have a succession of Primary Care Providers provide sympathy, not competency.

The passive pulmonologist comes in for his share of the blame, too, because he fails to recommend pulmonary rehabilitation programs, or to otherwise adequately educate the patient to successfully manage his disease and carry on a meaningful life. His passivity contributes further to the problem by leaving the patient more vulnerable to secondary infections, medication conflicts, coronary complications, severe depression, and other negative effects of a sedentary life-style.