The Cancer Experience

The doctor, the patient, the journey.

Quality of Life Concerns and the Search for Autonomy

Cancer patient sometimes chose to not follow advice they feel unacceptable

For some patients, loosing a valued lifestyle in an effort to cure their cancer is an unacceptable trade off, and not infrequently, they opt for quality rather than quantity of life. This is hardly a modern concept; in fact, certain Roman philosophers taught that it was more important to have lived well than to have live a long time (1). As a means of emphasizing this, I have often related the story of a patient I will call Mr. C., whom I first saw in 1983, when I was a surgeon on the Head and Neck Service at Memorial Sloan Kettering Cancer Center in New York City. He had a fairly advanced laryngeal cancer, which by the standard of care in 1983, required a total laryngectomy (removal of the voice box) and postoperative radiation therapy. While that treatment package was curative in a high percentage of patients, it would have irreversibly altered his ability to talk, and would have required a permanent opening in his trachea (windpipe).  Mr. C. was the quintessential urbanite—a cultured and refined New Yorker. When I told him the “good news” - the high probability of cure - he smiled and said, essentially, “thanks, but no thanks.” He was willing to try radiation therapy alone, but nothing else.

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This dignified older man proceeded to tell me that he and his wife were childless and that their very pleasant life consisted of his activities with the Metropolitan Opera, the theatre, his academic lecture schedule, and their very busy social life among the intelligentsia in the galleries and museums of New York City. He and his wife had decided that the quality of life issue outweighed all else, and that if we couldn’t find a more acceptable way, he didn’t want to live, and in fact, would “take care of his own arrangements for the end.” This less than subtle suicide threat was delivered with a courteous smile that in my mine surely belied what underneath was a desperate and depressed man. Such was not the case, however, and the cool demeanor and steely resolve of this chilling statement unnerved me. When I turned to Mrs. C. for help, she stood up, walked over to her husband’s side, rested her hand on his shoulder, smiled, made unequivocal eye contact with me, and by her countenance confirmed that, indeed, she was on board with this plan. I then played my trump card by saying that if we used radiation alone, there was little chance of cure, and a few months down the road, we would be back to the same place, except that the chance for cure through salvage surgery would be much worse. He countered by saying that surgery at that point would be no more acceptable then it was presently; therefore, my statement was moot. I did not make the point that a death from uncontrolled laryngeal cancer was a most unpleasant and prolonged way to die. He had already negated that argument with his plan for ending his own life, rather than face such indignity.  “We understand all of this,” said Mr. C., “and we would never hold you responsible for failure. This is what we’ve decided, and this is what we want. Will you arrange it and remain our doctor, after the treatment? We trust you completely, and by the way, there’s no need for you to suggest a second opinion; you are the second opinion.” After my own adjustment to the patient’s firm resolution in totally ignoring my advice, I went along with what they requested. The patient was treated with radiation, did stay on the board of the Metropolitan Opera, and furthermore, the couple continued their life style for some time to come. I received yearly Christmas cards from Mr. and Mrs. C. for over ten years, and on each card was the picture of a dapper couple – each year a little older- dressed to the nines, and a sweet note wishing my family and me happiness and well being. The “PS” that was always at the bottom noted the number of years since we had treated his cancer “his way.” I never interpreted this as sarcasm, but instead chose to let it remind me that sometimes the patient knows best and that one should follow the age-old rule of thumb, “Doctor, listen to your patient—it’s often good advice.” It’s worth noting that at the time of this writing— thirty years later—the standard of care for Mr. C’s cancer is, in fact, radiation, rather than the laryngectomy that I had recommended. I have often wondered if Mr. C. had proprietary information in 1983. 

There is a measure of maturation in a surgeon’s willingness to deal with the situation that I have just cited with Mr. C., and I might add that my interaction with him was one of those significant educational situations in my own maturation. I was really frustrated by his quiet determination to ignore my advice, no matter how strongly I made the case. I couldn’t believe that his final answer was “thanks, but no thanks”! My inclination was to let him find a radiation therapist, and take no responsibility for his care. Instead, I reluctantly yielded, referred him to the proper radiation oncologist, and arranged to stay involved and see him in follow-up along with the treating oncologist. The rest is history. 

The message here for young oncologists is not so much the fact that the patient turned out to be right and I was wrong (by today’s standards), nor is it that he sought the correct treatment for the wrong reasons. What is important is that after considerable research and contemplation, he and his wife decided that the recommended treatment was worse than the alternative—which in his case was a planned suicide. This was clearly an educated and intelligent patient—levelheaded and not depressed—insisting on autonomy. Other patients encountered in my own career—a diplomat, a network television newscaster, a noted Broadway star, a TV network president, an accomplished movie actor—also simply would not accept substantial surgical procedures that would cripple their speech and voice or disfigure them. Mr. C’s reasons for saying “thanks, but no thanks” related to the potential inability to socialize within his cultured and sophisticated network. In the case of these other patients, it was all about refusing career-ending treatment. More often than not, their choice of treatment failed, but in these, there usually were no regrets. 

No matter how strong the physician’s competitive instincts to defeat the disease, in the final analysis the decision should be made based on what is best for both the patient’s physical and psychic health. To put it another way, what we do should be about the patient, not about the physician. The patient’s reasons for going in this direction are essentially irrelevant. If they still feel the same after the facts have been bluntly laid before them, so be it. I have had a long and busy clinical career, and reflecting back brings to mind a number of cases similar to those that I have cited in which the patient has said “thanks, but no thanks.” This is not a rare situation. 

The whole patient autonomy concept has taken on a life of its own in the current era of widely distributed information, advocacy groups, and patients who do their homework. With today’s patient population, a physician’s proclamations are not necessarily accepted as gospel, and the youth of the profession must accept, and those of my generation must adapt to this permanent alteration of behavior in the world of medical care. I can remember a number of very radical operations and treatment plans that I imposed on patients in the past, and as I think back, I confess that knowing then what I know now, in some of them, I would not recommend what I did. Even more revealing with my self-appraisal, I would now not accept for myself what I did to them. I have discussed this matter with other senior surgeons who share my feelings that in the past we did not always pay enough attention to patient quality of life. In the contemporary cancer care world we should be committed to the goal of maximizing the chance for cure while maintaining a strong emphasis on the individual’s quality of life. Curing the cancer at any cost—that is, returning the patient to society, cured but incapacitated—is no longer an automatically accepted strategy, and such an approach should always be sternly challenged. Strategies of organ preservation and function are, therefore, constantly being developed and utilized in the oncology world of today.

During the twentieth century, surgeons appropriately pushed limits, all the while seeking to perfect bigger and bolder operations; what has been achieved is truly remarkable. Even though we have always sought enlightenment and knowledge, this emphasis on surgical elegance has dominated us largely because of the lack of scientifically based alternatives. That is, however, no longer the case. By and large, we are now appropriately focused on multiple methods of combating cancer.

For example, although the U.S. Food and Drug Administration has not yet approved a therapeutic cancer vaccine, a number are currently undergoing experimental clinical testing. Vaccines for melanoma, non-small-cell lung cancer, non-Hodgkin’s lymphoma, HER 2 positive breast cancer, renal cell carcinoma, glioma, prostate cancer, acute myeloid leukemia, head and neck cancers related to human papilloma virus (HPV), and others are currently in Phase I, II, or III trials, respectively. Where all of this will ultimately settle is uncertain, but I suspect that future cancer treatments will utilize combination methods—surgical, chemotherapeutic, biologic, and nuclear—on a routine basis, and as genomic research evolves, prevention and alteration will surpass much of what we do today. Intellectualism and scientific creativity is the future canon of cancer care.

 

Roy B. Sessions, MD,FACS

Charleston, SC

 

Reference:

(1) The Stoic Philosophy of Seneca, Letter 70 in the series of Letters to Lucilius: Moses Hadas (NY:W.W. Norton, 1958

Roy B. Sessions, M.D., is retired but still teaches head and neck surgery at The Medical University of South Carolina.

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