Iain Mackie is director of the HIV Care Program at the St. Joseph's Health Centre in London, Ont.
Canadian Medical Association Journal 1995; 153: 967-968
[résumé]
Last week one of my closest friends, a vibrant, handsome man who had been a model in his earlier days, died of AIDS-related non-Hodgkins lymphoma. "Jeff" had such unending optimism about his future that when standard chemotherapy failed and his tumour recurred, he went to Buffalo for an experimental therapy that offered a 20% chance of remission.
His physicians and friends agonized over the decision, for we felt it was one of utter desperation. But no doubt I would have done the same in an attempt to trade despair for hope.
After only one treatment Jeff returned to London, where he died of renal failure several days later. His partner and family were by his side, rubbing his chest to ease his breathing, comforting him, letting him know that they loved him and cared for him. Deep in a coma from narcotics and uremia, he died comfortably and peacefully, as we had promised his family. We grieved for our friend, filled with the sense of waste and loss that characterizes all premature deaths.
It is a week since Jeff's funeral and I sit at home reading several recent articles on AIDS culled from the medical literature. As I read, I am filled with utter despair. A report in the BMJ confirms the Concorde study's finding that the early use of zidovudine fails to prevent progression to AIDS and has no effect on survival. The Annals of Internal Medicine tells me there is no benefit from combination antiretroviral therapy with zidovudine and dideoxycytidine (ddC). Dr. Paul Volberding, one of the world's leading experts on AIDS, updates an earlier study of zidovudine in JAMA and concludes that there is no difference in survival between patients on zidovudine or placebo. Another JAMA article looks at ways to predict who will fail prophylactic therapies for Pneumocystis carinii pneumonia (PCP). From the latter I discover that smoking seems to protect AIDS patients from developing PCP -- for years I have tr! ied to convince my patients to quit -- and that even the best prophylactic therapies delay progression to AIDS by an average of only 12 months.
Of the six papers I brought home, only one could be considered at all optimistic, and it looked at the use of bronchoalveolar lavage in diagnosing AIDS-related pneumonias. I am not sure my friend Jeff would thank the scientific community for this startling advance. How nice for me to be able to tell him that had he survived his cancer we would have been able to diagnose his opportunistic infections with ease, and that he would still die anyway.
It is generally not my nature to be pessimistic -- I might even be accused of being overly optimistic in my care of AIDS patients, for I do believe in antiretroviral therapies. In spite of the negative reports, I feel that my patients benefit from them, especially if they are used early. I employ zidovudine and ddC in combination, and my impression is that these patients do extremely well. And I'm sure that preventing opportunistic infections has done more than anything to keep people healthy. Several years ago there were reports that once the CD4 count falls below 0.05 X 10[9]/L, median survival is 12 months. Ha! Tell that to the six or seven patients in my practice who have had CD4 levels of 0.0 for more than 4 years, yet remain healthy on multiple preventive therapies. Finally, I can't condone smoking, whether it helps prevent PCP or not.
Having treated persons with AIDS for more than 12 years, I have seen my share of triumphs and tragedies, death and suffering, hope and despair. I treat AIDS patients in my dreams. Yet in spite of my optimism I remain a realist. I try to temper the seeming inevitable fatality of AIDS with the realization that these therapies are but temporary measures that offer a window of opportunity that allows for the arrival of newer, better, safer, more effective therapies. Use these drugs, I tell patients, and you may be around for the arrival of the really good ones.
But as I sift through the latest gloomy offerings in the journals, I feel that I am not only deluding my patients with my optimism, but also myself. I have blinded myself to the science of AIDS. In attempting to instil a sense of hope in my patients, have I ignored the science? Trying to reconcile my inherent feelings of the benefit of therapies with the reality of science creates a dilemma: How can I face my patients tomorrow and advocate their use of drugs for which there is no scientific proof of effectiveness, nor evidence that they will alter survival?
People with AIDS are not ordinary patients. They are exceptionally knowledgable about the disease, with many knowing more about it than most physicians. They have demanded to be involved in the decision-making process. I act as an advocate, advising them of the pros and cons of particular treatment options, providing access to the latest literature and research trials, then letting patients make up their own minds based on a position of knowledge -- unbiased knowledge. They will see right through me if I try to delude them with optimism.
My friend Jeff would simply have said "get on with it." I recall one conversation with him shortly after I had tested him for HIV infection about 4 years ago. He said that there was no sense sitting back and letting the virus take control, and that he would do whatever was necessary to stay alive. No matter what the outcome, he would look HIV squarely in the face. And he did just that right to the end. But be also told me one curious thing -- that he did not want to hear any bad news.
Perhaps his words have answered my own dilemma. The politics of despair must never triumph over the politics of optimism. The loss of hope must surely be more harmful to those with AIDS than any interventional therapy. The politics of optimism is the power of positive thinking.
My own unscientific study of my patients suggests that those with a positive attitude fare far better than those who are pessimistic or negative about their future -- we have all heard anecdotal reports of people who have "willed" away their cancer. So I will continue to instil hope in my patients by offering preventive therapies as early as possible, in spite of the science. In the absence of a cure for AIDS, the politics of optimism would call for us to err on the side of offering treatments and thus offering hope.
Perhaps it is my own denial I must deal with. Perhaps I am being maudlin because I am still mourning the loss of a friend. Perhaps the patients in my practice who to date have refused antiretroviral therapies are correct. Perhaps we are simply using these drugs at the wrong time.
But what choice do we have but to press on, offer the limited treatments that are available, and be as optimistic as possible? What choice do we have but to leave our patients and friends with some hope? That there is little scientific proof means nothing when it is a matter of life and death.
It seems that as time goes on in the world of AIDS, we understand more and more, but know less and less. I despair that we are merely the custodians of our patients' health, and are not the owners. The best I can do is offer my patients a degree of optimism that may sustain them in desperate times, and hope that some will still be alive when truly effective therapies come along.
I may be treating only myself as I feed off the politics of optimism, but at least I will not be feeding off the politics of despair. And I think my friend Jeff would be happy with that.
See also:
Potholes on the road of life