Upon receiving a diagnosis of a fatal illness like metastatic cancer, Alzheimer's disease or congestive heart failure, many patients ask, "Doc, how much time have I got?" It's a reasonable question, given that there is often much to plan for and accomplish before a progressive illness robs patients of their physical or mental abilities.
Yet prognosticating is one of the most challenging tasks doctors face. Unless patients are within days or weeks of dying, it is often impossible to provide an accurate prognosis. And studies have shown that when doctors do try to gauge a patient's remaining life expectancy, more often than not they overestimate it. Out of fear, ignorance or concern for their patients' emotional well-being, they tend to be overly optimistic.
"Accurately predicting life expectancy in terminally ill patients is challenging and imperfect," a medical team wrote in the journal Mayo Clinic Proceedings in November 2005. "Physicians are typically optimistic in their estimates of patient survival."
The team, from the Mayo Clinic, cited a study in which survival predictions were made for 468 patients in hospice programs, meaning they had stopped treatment to prolong their lives. Only 20 percent of the predictions were accurate; 63 percent were too optimistic.
In a second study, also among patients receiving hospice care, the median survival was 24 days, but the median survival estimate doctors offered patients was 90 days. In general, researchers have found that doctors tend to overestimate patient survival by a factor of three to five.
As one physician interviewed anonymously by The Journal of the American Medical Association put it, "When we prognosticate and it turns out that the patient lives a longer life, then we can be joyous with them, but when we prognosticate and the patient ends up living a far shorter time, that's when we really do harm."
THE VALUE OF CANDOR
Patients use information about the expected course of their illness, including how long they are likely to survive, in a variety of ways. It can help them decide whether to take a long-awaited trip, which therapies are worth pursuing, what kind of support system they may need as their condition worsens, and how much time they will have to put their affairs in order.
Patients often have things they want to accomplish before they die, and knowing that their time is short may prompt them to attend to such matters. Receiving a terminal prognosis may also open up conversations about death and dying that may be painful at first but can bring considerable relief to patients and family members alike.
Doctors do best in providing accurate prognoses for patients with advanced cancer, because the disease follows a more predictable course and the medical literature provides a range of survival times for most cancers. For example, when my brother-in-law was found to have mesothelioma, an asbestos-related cancer, he was told he could expect to live eight to 12 months. He used that time to get his financial and personal affairs in order, share meaningful goodbyes with his family and friends, and pass along a rich legacy of good music, memories and wisdom.
DIFFICULT CHOICES
Arlene Wysong, a New York businesswoman, was 65 years old, ostensibly very healthy and leading a rich, active and fulfilling life when she was surprised by a diagnosis of Stage 4 lung cancer. She said she had quit smoking 22 years earlier after being "a marginal smoker for about 20 years."
"It was a total shock," she said, "and I knew what it meant. It meant I had an incurable cancer. I asked for a prognosis. The doctor said three to 12 months."
Wysong made a choice. Knowing she could not be cured, she chose "no chemotherapy, only palliative care" -- treatment for pain and any other symptoms that might impede her ability to live out her last months as fully as possible.
"I didn't want toxic chemo," she said in an interview. "I didn't want to lose my hair and be sick. I felt I had a very short time left, and I didn't want to spend it being sick. So I rented a house in the country large enough for people to visit and stay overnight, and I enjoyed the summer.
"My goal was to make sure I saw all the friends and family I wanted to see and to spend quality time with them. I made out a new will and transferred my business, but I stayed involved with it for as long as I could."
Wysong also used the time to work on serious issues that had caused a rift with her daughter, and they succeeded in restoring a loving relationship. She also outlived her doctor's prognosis, and 16 months after learning of her cancer, she called in hospice care, remaining at home until she died last October with her family at her bedside.
Prognosis is helpful, not just for patients, but also for their families, who may need to know, for instance, how much time they may have to take off from work, whether they should arrange for an extended leave, what might be involved in caring for a dying person at home and whether other arrangements should be explored.
THE DOCTOR'S DILEMMA
"Quite separate from the challenge of estimating survival accurately, physicians may also find the process of disclosing the prognosis to their patients difficult," wrote Drs. Elizabeth B. Lamont and Nicholas A. Christakis in The Journal of the American Medical Association in July 2003.
In some cases, patients make it clear that they simply do not want to know.
More often, however, the family wants to keep difficult facts from the patient. A study in Ireland, for example, found that while 83 percent of patients wanted to be told the truth, only 55 percent of their relatives wanted the patient to be truthfully informed. The lesson here, the researchers concluded, is for doctors to ask patients, not family members, how much they want to know about their disease.
A common fear among doctors is that providing a terminal prognosis will strip patients of hope. Indeed, it will dash hopes of long-term survival. But the doctor can convey other sources of hope. For example, patients may be relieved to learn that they will remain well enough to attend an important family event, or that palliative care is available for distressing symptoms like pain, nausea and shortness of breath.
Most important, patients say, is for doctors to stay with them until the end. Fear of abandonment (some terminally ill patients are in fact abandoned by their doctors) is extremely common. Doctors see themselves as healers, trained to cure or ameliorate illness, and typically view the impending death of a patient as a personal failure. Rather than face failure, they abandon the patient.
Patients may be able to help themselves in this respect by reassuring the doctor. "I know you tried very hard and I appreciate all you did for me," they might say. "It's not your fault that I won't survive this disease. It would help a lot, though, if you stay with me for the long haul."
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