What we can do to help patients keep their expectations realistic
From the January 2000 ACP-ASIM Observer, copyright © 1999 by the American College of Physicians-American Society of Internal Medicine.
A recent experience forcefully reminded :me that today's patients have much higher expectations than they did 30 years ago, when I began practice. Not only do they often assume that every condition has a cure, they also believe it can be achieved rapidly and painlessly.
The case involved a 26-year-old man who was referred to me with cystic fibrosis, respiratory failure and cor pulmonale requiring continuous oxygen therapy. He and his family believed that he would benefit from an immediate lung transplant. They had also heard that specific gene therapy was available.
It was my task to review the reality of this situation. I told them that while excellent results had indeed been achieved in some lung transplant recipients, lungs suitable for transplant were so scarce that candidates typically had to wait years, and few ever actually received new lungs. I also had to inform them that while gene research was extremely exciting and certainly had the potential for future clinical application, at this time there was no gene therapy that was suitable for him.
Understandably, the patient and his family were devastated by my counseling and have only recently returned from visits to several other medical centers to seek alternate opinions. My patient is now on the waiting list for a lung transplant.
The media must certainly shoulder some of the blame for this kind of unrealistically high expectation. Beginning with "Ben Casey," television has consistently presented medical scenarios that defy the imagination in terms of sheer sensationalism. No matter how far advanced and how complicated the medical situation might be in a TV show, you can almost always safely bet that the patient will make a full recovery.
The medical profession must also examine its role in the increasingly unrealistic and inappropriate expectations held by the general public. Nowhere do we see this more than in the slick radio and television advertising produced by medical centers, many of which are losing money and in desperate need of new patients. Their message is clear and persuasive: See a doctor in our medical center and you will be cured.
Although I have not done any research in cities other than my own, I suspect that unethical advertising by medical institutions is a very common practice. I do know that it leads to hopelessly unrealistic patient expectations, as well as to confused and expensive evaluations.
This is overt advertising, and as such it violates several tenets of professionalism. The 1998 fourth edition of the College's "Ethics Manual" is unequivocal on this subject: "Advertising by physicians or health care institutions is unethical when it contains statements that are unsubstantiated, false, deceptive, or misleading, including statements that mislead by omitting necessary information."
The public is also misled frequently by comments from medical experts on the prognosis of celebrities. A particularly egregious example of this happened when the late Cardinal Joseph Bernardin was diagnosed with metastatic pancreatic cancer several years ago. I remember hearing nationally recognized experts not involved in his care citing preposterous survival rates.
The supreme irony of the matter was that Cardinal Bernardin publicly accepted his fate from the beginning, and in his final months he taught everyone in Chicago a great deal in both his writings and speeches about death and dying. I have the privilege of knowing the cardinal's physician, and he speaks eloquently of the grace and dignity that characterized his final months. Cardinal Bernardin the patient was far better able to accept his mortality than a bevy of physicians not associated with his care.
The role of physicians
So what can we do as physicians to get our patients to have more realistic expectations? For one, we need to remember the following warning from Sir William Osler when speaking directly to the press:
"In the life of every successful physician there comes the temptation to toy with the Delilah of the press. There are times when she may be courted with satisfaction, but beware! Sooner or later she is sure to play the harlot, and has left many a man shorn of his strength, namely, the confidence of his professional brethren."
For those of us who are not regularly approached by the press, we can start to cure our patients of their false expectations right in our own consulting rooms. Patients hear what they want to hear and are deaf, at least initially, to information that defies their expectations. While internists do not purposely mislead their patients, we all need to remember that information can become wildly distorted as our patients traverse a fragmented and often poorly communicating referral system.
We also need to remember that poor communication can sometimes have the opposite effect and make patients think they are sicker than they really are. A recent personal experience comes to mind involving a fit 84-year-old gentleman who on a very hot day last summer defeated me in a golf match. We had walked the 18 holes, and it had been a thoroughly enjoyable afternoon, despite the heat and the outcome of the match. After our game, he mentioned that earlier that week he had accepted his hospital's offer of a "free heart scan." A physician later told him that he had "flunked it" and that he would require a cardiac catheterization and possibly surgery.
I was able to convince him to see his internist with whom he had not shared any of this. His internist subsequently telephoned me and reported that despite the identification of some calcium on a rapid EBCT scan, his patient remained asymptomatic with normal noninvasive studies. The internist said that he had strongly recommended that the patient not proceed with a cardiac catheterization because in his opinion, the heart scan currently was an unsubstantiated screening test.
Perhaps the real solution to the problem of heightened patient expectations requires nothing more or less than a return to professionalism. We need to be mindful of Osler's concern about the press. Along with risking the loss of a patient's confidence, we also risk losing the trust of our colleagues. Open, honest communication between generalist and specialist can head off many instances where a patient's unrealistic expectations could prove cruel, painful and expensive.
As always, I welcome your comments at firstname.lastname@example.org.
—Whitney W. Addington, FACP
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