Medical Treatment, Moral Dilemmas, and Integrated Primary Care*

In the Winter 1999 edition of The Health Psychologist newsletter, I coauthored an article with Roger Johnson on Integrated Primary Care (IPC). In that article, Dr. Johnson and I discussed some of the philosophical and business underpinnings of integrated primary care, one of which was the population-based approach.

In an editorial in that same issue, Kevin Masters discussed a number of important concerns, and I would like to respond to one central issue that he raises. Dr. Masters stated, "A major concern that many people have with health maintenance organizations is the HMO's willingness to treat the inexpensive, yet common, problems to the exclusion of the more expensive and idiosyncratic disorders." This is an important and difficult question, and one with which I have had some personal experience.

A few months before writing the article that Dr. Masters referenced, my friend and partner of 19 years, Dr. Kevin Gaffney, was diagnosed with primary amyloidosis. This is a rare condition - I had never heard of it before. It is unfortunately, a very deadly one.

One of the first physicians I asked about this condition said simply, "It's a death sentence." But within a few weeks, we learned of an experimental program at Boston University Hospital which was having success. Seven amyloid patients there were offered an experimental regimen. Of these, three died, but the remaining four have apparently been cured. These are the first cures in the history of the treatment of primary amyloidosis, and this is obviously an extremely exciting development. However, this course of treatment is both very difficult for the patients to tolerate, and incredibly expensive.

The proposed course of treatment for my partner would involve waiting in intensive care, perhaps for months, for a heart transplant, followed by close observation during his recovery period. During this process, he would undergo biopsies of all of his organs to see if the amyloidosis had spread, and hope no other organs failed. When his new heart was strong enough, he would undergo intensive chemotherapy to kill the amyloidosis, but this process would also destroy his own bone marrow. When he had recovered sufficiently from chemotherapy, he would undergo a new high-tech stem cell transplant. This would either kill him with fevers of 106º, or if successful would enable him to regenerate his own bone marrow. If he survived all of this, he would have a reasonable chance for long term survival.

While my partner was facing this, one of his greatest fears was that his health insurance would deem this an experimental procedure and not pay for it. This was precisely the concern that Dr. Masters raised in his article, and it is an important one. For such patients, denial of authorization for treatment feels like a death sentence. It removes their only hope for life.

At the same time, in my own clinical practice, I was seeing another patient, whom I will call "John." John worked as a laborer. He had little education, and despite being a hard worker, he made working class wages.

John was court-ordered to see me. He had suffered a debilitating injury at work, and it eventually became clear to him and his doctors that he would never return to work as a laborer. Given his low level of education, John did not know how he would ever again provide for his family, and he became very depressed. His worker's compensation insurer refused him treatment for his depression, even though arguably they should have covered it.

Eventually, a judge ordered his insurer to provide such treatment, and John was referred to me.

Initially, I planned to help John deal with his chronic depression, pain and stress. However, I immediately ran into a more substantial road block. John was diabetic, and no longer had the money to pay for the treatment he needed. Consequently, when I began seeing him, he had been without insulin for about two weeks. It is difficult to provide stress management psychotherapy for a patient whose blood sugar is running above 500, and who is worried about the possible loss of his vision as a result.

John could not afford insurance. It was simply too expensive for a person of his meager income, and community medical resources were only available to him intermittently. He had to do the best he could to fend for himself.

I found myself angered by John's situation. By a quirk of fate though, I was working with him during the same period that my partner was dying. I was an advocate for both of them, but eventually I came to the painful realization that their two dilemmas were connected.

There is a medical under class in the United States, and it is growing in size. Currently, 43 million Americans have no health insurance. This number was increasing by about one million a year during the recent hiatus of medical inflation. The number of uninsured persons can now be expected to rise faster, however, as double digit medical inflation has returned. In my own area of the country, medical premiums have risen as much as 27% this year. In this country, healthcare may increasingly become a matter of the haves and the have-nots.

Each of these two people I cared for, my partner and John, embodies one of the poles in this continuum. Their needs compete with each other. If we lived in a world of infinite resources, there would be no issue. There would be enough to go around for everyone. Unfortunately, this is not the case. Progress in the science of medicine has enabled researchers to find means of treating deadly conditions such as amyloidosis. As technology pushes the envelope though, some of the newly discovered cures are extremely costly.

Did I advocate that my partner receive this experimental treatment? You bet. How could I not? At the same time, I know intellectually that coverage of such treatment regimens is one of the reasons for the rapid inflation of healthcare costs. I also know that the more costs inflate, the more persons like John are unable to purchase even basic coverage for themselves.

Health insurance is our lifeboat, but it is ultimately a service that somebody has to pay for. Its policies make it available to some, and not to others. Given our finite resources, it simply cannot do everything for everybody. As lines are drawn, some persons and conditions will be included, while others are excluded. Despite our country's wealth, we cannot sustain the astounding expense generated by unlimited healthcare.

I have come to believe that drawing these lines is one of the greatest moral dilemmas our society faces. I see within myself the two poles of the debate raging around this. On one hand, I think of my partner, and the hope offered by a potentially life-saving experimental regimen. When I focus on him, I am ready to embrace a philosophy based on meeting such individual needs. As I contemplate John's situation, however, I find myself advocating a competing philosophy, that of serving the population's needs. John is one of millions of Americans who cannot afford health insurance, and until we can find some ways of controlling costs and making it more available, needs of the medical underclass will go unmet.

It is within this context that I return at last to integrated primary care. Integrated primary care's foundational mission was to assume responsibility for meeting the medical and psychological needs of a population. This is neither right nor wrong, but simply one philosophical approach. There were two corollaries to this line of reasoning (not insignificantly for the profession of psychology). One was that the perceived importance of health psychologists increased dramatically. The other was that the various difficulties with getting reimbursement for psychological services were solved

In integrated primary care, the principles mentioned above apply equally to both medical and psychological conditions. This was the basis for our example: Is it better to spend 100 hours with one patient, or one hour with 100 patients? There is, of course, no simple answer to this. You must simply do the best you can, recognize limits, and then make difficult decisions. In the end, my partner's insurer did authorize all of his treatment. Unfortunately, his condition progressed too rapidly, and he did not survive.

As a person with only peripheral involvement in the Kaiser System, I find what they are doing to be a bold experiment, and I commend them for it. I respect the work of psychologists Roger Johnson, Steve Tulkin, Kirk Strosahl and others. They are involved in efforts to totally redesign the lifeboat of health care, in the attempt to create the most efficient system possible. I do see this as a truly revolutionary change, which fundamentally alters the paradigm of healthcare delivery. Revolutions necessarily lead to upheaval though, and can be a tortuous process.

I understand Dr. Masters' concerns. I am aware of cases where insurers were judged to have acted in bad faith. To be fair, though, I have also seen instances where insurers appeared to motivated by more altruistic values. It is my hope that Kaiser of Northern California will be successful in building an effective integrated primary care system and that it will be able to strike a balance between providing comprehensive medical and psychological care on one hand, and the constraints of economic reality on the other. I wish them my best as they face these difficult decisions.

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