Canadian Medical Association Journal 1996; 154: 139-143
I read "The politics of despair: AIDS and the failure of treatment" (CMAJ 1995; 153: 967-967 [full text/résumé]), by Dr. Iain Mackie, with great interest. Mackie emphasizes the importance of positive thinking, optimistic attitudes and continued hope in the face of adversity, for both the caregiver and the patient.
Although I do not treat patients with AIDS, I certainly attend to many terminally ill people. Today my mentally alert, cheerful, grandfatherly patient died of lung cancer. As a physician who sees death regularly, I must cling to more permanent anchors than optimism and hope in medical cures.
Faith in God is what we all need. Ultimately, when imminent death strips away everything else, it is all we can actually hold onto. This faith transcends time and space and puts us all in touch with eternity. Death will be real to every one of us. The biblical Book of Hebrews teaches that faith, or a belief that God exists, is all that we need for God to draw close to us and that without this kind of faith humanity cannot experience true God.
Faith opens the door to real hope. This is more than a hope to find a new drug so that temporal life can last a little longer. Biblical hope refers to the hope for eternal peace, which is found in unending Love. This Love is, in fact, God.
When my patients have no further recourse for help through standard medical treatment, as is often the case with patients with AIDS, it is nice to be able to offer them hope through faith in God. It is so relieving to pray with a terminally ill patient, and so easy to do if the caregiver has faith to believe the prayer is heard by the One who cannot be seen but is still there.
Robert H. Brown, MD, CCFP
Abbotsford, BC
As an elective student with Dr. Mackie at the HIV Care Program in London, Ont., last year, I was pleased to read his reflections. By working with such an insightful and compassionate physician, I learned much about the care of patients living with HIV. I could have known "Jeff," Mackie's friend and patient, whose death triggered these articulate reflections on the importance of hope for patients with AIDS.
"What choice do we have but to leave our patients and friends with some hope?" asks Mackie. Even with my modest experience in dealing with patients with HIV and AIDS, I can verify patients' need for hope. I can also verify the integrity, dignity and zest for life that many of Mackie's patients shared with me during my rotation.
Last year, I did another elective - this one in palliative care - that helped me explore some of the issues Mackie ponders. I worked with many patients with terminal cancer, many of whom had seen standard treatments fail and were exploring experimental chemotherapy and alternative treatments, much like Jeff's desperate search for a cure. I kept feeling that I was misguiding these patients by recommending treatments that had no proven benefit, just to provide them with hope.
I read a passage in How We Die, by Dr. Sherwin Nuland,1 that deals eloquently with the need for hope. For Nuland, there are different kinds of hope for people dealing with a terminal illness. Sometimes, fostering hope for a cure when that hope is no longer reasonable can be counterproductive. It can focus the energy of those living with a terminal illness solely on the cure, rather than on the people and experiences that enrich life. In short, false hope can keep people from living what remains of their precious time. But there is always hope: hope that the patient will have rewarding times with family and friends, that he or she will retain his or her personality and sense of humour despite suffering, that he or she will be reconciled with those who have been wronged. Sometimes these "different kinds of hope" can be more rewarding to the patient than a misguided hope of cure when that belief only impedes living.
The determination of patients with AIDS to keep on living, despite their illness, has always impressed me. Patients living with AIDS have taught me the maxim, "Fear not that your life will end; fear that it will never begin."
Merrilee G. Brown, MD
Ottawa, Ont.
Reference
Dr. Mackie eloquently shares with us his personal anguish over the loss of his friend and his professional struggle with some of the dilemmas of treating patients with AIDS. He has expressed the struggle faced by any of us who treat seriously ill people. Part of our dilemma is that the informational base from which we work is rooted in the apparently black-and-white world of science. We are increasingly encouraged to practise "evidence-based" medicine, with its p values and statistical significance. The world that we encounter, however, is an enormous collage of beliefs, values and hopes; we are left to decide how to apply this valueless information in this most real but often unscientific world. We find ourselves pondering the proper goals of medicine when we try, as Mackie does, to decide whether to offer a treatment whose benefit may be measured only by our own unscientific belief in it or by our patient's upsurge in hope.
At the same time, part of Mackie's dilemma stems from the notion of hope. The word usually needs to be defined in terms of what one hopes for. As physicians, we tend to place our hope solely on the possibility of cure or prolonged survival. We also tend to see despair as the only alternative. The truth is that all of Mackie's patients, all of our patients and each of us will face that moment when we can no longer hope for cure or prolongation of our lives. What, then, do we hope for? With AIDS, the tragedy of these markedly shortened lives seems greater than usual, and the temptation to despair may be stronger than usual. Could we stave off despair by exploring with these patients what they value and hope for in the time they have remaining? Could we relieve their and our own sense of despair by com ing to understand more about the sources of that despair? We may not always be successful. The choice to despair will always remain, but the option of hope is always available, regardless of whether we have a medical treatment to offer. As physicians we need to believe in our ability to work beyond the realm of science. We need to believe that, at the end of science, we have more to offer than despair.
Robert Sauls, MD, CCFP
Mississauga, Ont.
Received via email
Whether one calls it hope or faith, as Dr. Robert Brown describes it, I believe that hope will be rewarded. As my article was going to print, results of a trial of combination antiretroviral drug therapy was released.1,2 This trial showed that the early use of a combination of antiviral drugs significantly delayed the progression to AIDS and prolonged life. Hope and faith may both be answered ultimately by science. Or perhaps science will be answered ultimately by hope and faith.
Iain D. Mackie, MD, FRCPC
Director
HIV Care Program
St. Joseph's Health Centre
London, Ont.