Depending upon how they are interpreted
predictions often have a
profound impact on a patient's morale.
In our culture
we tend to deny death altogether and celebrate new forms of medical technology designed to forestall death.
I asked him for an answer
I wanted to know what he thought my prognosis was so I could make decisions and choices.
[C]oming to a state of acceptance is a result of a long, ongoing process.
I Want to Know, but
The following article is excerpted from Chapter 5 of Advanced
Breast Cancer: A Guide to Living with Metastatic Disease, 2nd Edition, by Musa Mayer, copyright 1998, published by O'Reilly & Associates, Inc. For
book orders/information, call (800) 998-9938. Permission is granted
to print and distribute this excerpt for noncommercial use as long as
the above source is included. The information in this article is
meant to educate and should not be used as an alternative for
professional medical care.
Knowledge and disclosure are often a mixed blessing for someone with a life-threatening illness. While accurate information can inform and protect, ensuring the best available care, at the same time, reading and hearing the cold, hard details can be painful at times for patients and their families. As an information seeker, it's important for you to understand the emotional fall-out often provoked by knowledge and prepare for it by finding ways of putting what you learn into perspective.
I told Sherry, my wife, that next month I enter the "maybe more" phase of prognosis. Last June when I laid in the emergency room, I was faced with having a pulmonary angiogram done, putting a wire up a vein in my groin into my lungs to see if I had blood clots in my lungs. It was something I had questions about doing. Trying to encourage me, the doctor in charge came in and said he had talked with my oncologist about my situation. Then he said, "Dr. T said that you have a good six months at least, probably a year, and maybe more."
Although he no longer had expectations for a cure, and knew that his tumor markers were again on the rise, Bob Stafford felt stunned, hearing these blunt words. Depending upon how they are interpreted, such predictions often have a profound impact on a patient's morale.
He robbed me of hope in trying to encourage me. He set the mental time limits in my mind. Even though I refuse to believe them, they sneak into my mind and say, "Time is short
." Hope is vital to the patient, the victor. It is what is robbed from them by the medical community, their family and friends every time they don't believe in the life ahead.
Issues of information-seeking and disclosure--especially with regard to prognosis--are of vital importance to anyone dealing with metastatic breast cancer. For Bob Stafford, this secondhand news from his oncologist felt intensely personal in its impact. Yet this particular moment of unwitting revelation points also to larger social trends that every cancer patient would do well to consider.
Well within the memory of most people who have cancer, attitudes in medicine about revealing diagnoses and prognoses have made a complete turnaround, from euphemisms and concealment to unvarnished reality, clinically delivered. This is true for both physicians and patients.
In 1961, 90 percent of physicians surveyed said that they preferred not to tell a patient of a cancer diagnosis. By 1977, a complete reversal of attitude had taken place: 97 percent of university hospital medical staff said that their preference was for telling patients a cancer diagnosis. While citing the influence of medical school and hospital training in this change, the authors of this study cautioned, "Physicians are still basing their policies on emotion-laden personal conviction rather than the outcome of properly designed scientific studies."1
Patients have changed in their attitudes as well. In a 1980 survey of 256 cancer patients, Dr. Barrie Cassileth found that patients' attitudes were in line with "the contemporary standard of informed and active involvement." Younger patients preferred the participatory, informed role, while older patients preferred the older, non-participatory model.2 According to a Harris poll in 1982, 96 percent of Americans wanted to be told if they had cancer, and 85 percent wanted a "realistic estimate" of how long they had to live if their type of cancer "usually leads to death in less than a year."3
Most of the people I interviewed felt this way, too. Barb Pender wrote:
The relationship that I have had with Dr. M is one of honesty. I have told him on numerous occasions that I want him to tell me when the prognosis does not look good, when my time is limited, and I have stressed that I honor honesty above all values when dealing with my cancer. He has been wonderful to me and I have always felt blessed to have a doctor that treated me as a flesh-and-blood woman rather than a file on his desk--and I hope that when the time comes that he might have to be brutally honest that I will remember my own words to him.
It isn't easy for a patient or a physician to go against the prevailing social beliefs, however. In a thoughtful essay in The New England Journal of Medicine, Dr. George Annas observed:
A culture's general attitude toward death strongly influences what information about their prognosis will be provided to terminally ill patients. In our culture, with its unprecedented life expectancy, we tend to deny death altogether and celebrate new forms of medical technology designed to forestall death. In this context, it is not surprising that physicians often conceal prognostic information from their patients, just as most physicians once refused to use the word "cancer." But concealment of prognosis from patients near death makes them feel abandoned and makes physicians feel estranged.4
These honest conversations can be agonizing. After some weeks of increasing pain, Kathy Stone wrote her friends on the Breast Cancer Discussion List that she'd been to see her oncologist.
He told me today that he needed to be up front with me and tell me my prognosis didn't look good at all
that the best he could do was try to keep one step ahead of the cancer and it was getting harder and harder to do and I should be aware that time was running out. I'm not sure if that statement made me really mad or put me into a scared as hell mode
I just know I came away feeling lost
and not about to give up. I might be shaking in my boots, but my boots are going to keep walking and maybe even kick some butt.
A flurry of messages came in response, most questioning the competence and wisdom of her doctor. Realizing she'd given the wrong impression, Kathy responded:
I wasn't angry with the doctor for him telling me there wasn't much they could do anymore except treat the pain
I asked him for an answer, so I expected him to be honest with me
I wanted to know what he thought my prognosis was so I could make decisions and choices. No one likes to think about there being that answer of "nothing else can be done." It's easy to get mad at the messenger.
PJ Hagler has spoken about her prognosis with her doctor on a number of occasions:
Dr. Nick and I have been able to honestly discuss the few choices we both have in the treatment left open to us. I luckily still have a few options left open to me. When I started on Taxol we had this type of discussion. My question was, "What is an unrealistic expectation of long life. If the Taxol were to work, how much of a future can I hope for?" Well, my Dr. Nick is not one to be cornered into a time limit on life. He said he sets no limits. His intention is to get a year at a time. He told me when he signed my paper for a handicap sticker for my car that he never thought he would get to sign two of those in my case. The sticker is good for two years and he thought one would be my limit, when we started this adventure. I've told him I'm not afraid to die, I'm just not through living yet. I know that I will not have another 10 years probably but I could get lucky. I don't live with the idea that I might not be here tomorrow or next week or even next year. I still plan for the future. Mike and I talk about retirement days. But, realistically I also talk about when or if I'm not here. And I'm okay with that. I have an inner peace about my death.
By the time PJ wrote these words, she'd been dealing with breast cancer for fourteen years, and metastatic disease for five. Clearly, coming to a state of acceptance is a result of a long, ongoing process. The patient with metastatic disease is presented with many opportunities to absorb bad news and learn to go on from there. Not everyone is fortunate enough to have the compassionate medical care, emotional support and inner resilience to do so.
The literature of medical disclosure contains stories of patients who die immediately after being told of a terminal prognosis. Anecdotally, at least, bad news can kill. "In a lot of cases, it causes people to just give up," says Marc Schoen, director of the Psychoimmune Program at Cedars-Sinai Medical Center in Los Angeles. But not all patients react this way, he says. "The flip side is the people who respond by saying, 'I'll show you.' It ignites them. It's just the motivation they need to fight."5
In an article with the provocative title of "Words as Scalpels," Dr. SJ Reiser writes:
The widespread belief among doctors that the revelation of threatening news causes patients considerable anguish and seriously erodes the prospect of maintaining their hope encouraged a policy of concealment for many centuries
. Advocates point out that candor can be beneficial and is favored by many patients, and that a policy of concealment usually fails to work, tends to place stress on patients by constraining discussion of anxieties generated by vague or implicit knowledge of the true situation, and exerts a damaging effect on trust in the medical relationship.6
- Novack, DH, et al., "Changes in physicians' attitudes toward telling the cancer patient," Journal of the American Medical Association, 241 (9): 897-900, March 2, 1979.
- Cassileth, BR, et al., "Information and participation preferences among cancer patients," Annals of Internal Medicine, 92 (6): 832-6, June 1980.
- Annas, George J., "Informed Consent, Cancer, and Truth in Prognosis," New England Journal of Medicine, 330: 223-225, January 20, 1994.
- Annas, George J., Op. Cit.
- Roan, Shari, "What to do when the news is bad," Los Angeles Times, October 7, 1993.
- Reiser, SJ, "Words as Scalpels: transmitting evidence in the clinical dialogue," Annals of Internal Medicine, 92 (6): 837-42, June 1980.