Thirty years ago Forbes Hill of Brooklyn learned he had prostate cancer. At age 50, with a young wife and a fear of the common side effects of treatment — incontinence and impotence — he chose what oncologists call “watchful waiting.” For 12 years, Mr. Hill was fine. Then in 1990 his PSA count, a measure of cancer activity, began to rise, and he had radiation therapy. That dropped the count to near zero. In 2000, with the count up again, he chose hormone therapy, which worked for a while.
Three years ago, with his PSA level going through the roof, he learned that the cancer had spread to his bones and liver. It was time for chemotherapy, which Mr. Hill said he knew could not cure him but might slow the cancer’s progress and prolong his life.
His oncologist was candid but not very specific. His doctor told him that with advanced metastatic hormone-resistant cancer like his, 90 percent of patients die within five years no matter what the doctors do, and about 10 percent survive six or more years.
“I took that kind of hard,” said Mr. Hill, an associate professor of media studies at Queens College. “I always thought I would live to 90, but I guess now I won’t.”
He has just started radiation to the brain, perhaps with infusions of an experimental drug afterward. “I’ll try chemo for six months, but if it gets too uncomfortable and inconvenient... ,” he said, trailing off. “Having lived 80 years, I’ve done a lot. I don’t have reason to think I’ve been badly treated by life.”
Mr. Hill seems ready for a time when treating his cancer is no longer the right approach, replaced instead by a focus on preparing for the end of his life.
But doctors who have studied patients like Mr. Hill say that often they do not know when to say enough is enough. In a desperate effort to live a month, a week, even a day longer, they choose to continue costly, toxic treatments and deny themselves and their families the comfort care that hospice can provide.
Specialists in ovarian cancer from University Hospitals Case Medical Center in Cleveland described a study of 113 patients with ovarian cancer in the journal Cancer in March.
“Patients with a shorter survival time,” they found, “had a trend toward increased chemotherapy during their last three months of life and had increased overall aggressiveness of care [but] did not have improvement in survival.”
The team concluded, “Our findings suggest that in the presence of rapidly progressive disease, aggressive care measures like new chemotherapy regimens within the last month of life and the administration of chemotherapy within the last two weeks of life are not associated with a survival benefit.”
With aggressive therapy, the majority of the women in the study who died did so without the benefit of hospice.
Dr. Thomas J. Smith, an oncologist and palliative care specialist at the Massey Cancer Center of Virginia Commonwealth University, said in an interview that patients needed to understand the tradeoffs of treatment.
“Palliative chemotherapy, which is what most oncologists do, is meant to shrink cancer and improve the quality and quantity of life for as long as possible without making patients too sick in the bargain,” he said.
The Cleveland team pointed out that the treatment goal can, and should, change. “There is a difference between palliative chemotherapy administered early in the trajectory of disease and near the end of life,” the researchers wrote. “The goal of end-of-life care should be to avoid interventions, such as cytotoxic chemotherapy, that are likely to decrease the quality of life while failing to increase survival.”
In fact, those who choose hospice over aggressive treatment often live longer and with less discomfort because the ill effects of chemotherapy can hasten death, Dr. Smith wrote in a review of the role of chemotherapy at the end of life, published in June in The Journal of the American Medical Association.
Some patients are just unwilling to acknowledge that nothing can save them, and want toxic treatment even if it means only one more day of life.
And sometimes patients are reluctant to relinquish treatment because they are terribly afraid of dying, of being alone cut off from care, Dr. Smith said in the interview. Patients may fear, with some justification, that if treatment stops the doctor will abandon them.
It is not only patients and their families who may insist on pursuing active treatment to the bitter end. Sometimes, doctors subtly or overtly encourage it. Oncologists may be reluctant to acknowledge that they can no longer sustain a patient. They may fear destroying a patient’s hope. Or they may be covertly influenced by the fact that their income comes from treatment, not from long discussions with patients and families about why palliative therapy should yield to supportive care.
Dr. Smith says that cancer treatments “have a huge price tag of up to $100,000 a patient per year,” which can impoverish even insured patients when there is a 20 percent co-pay.
He urges doctors to talk about hospice early, while treatment options are still available, and to assure patients they will not be abandoned in hospice.
Switching to Comfort Care
While there is no official definition of futile care, Dr. Smith suggests that it represents care that is “very unlikely to help and likely to harm.”
The National Comprehensive Cancer Network has established some guidelines about when to switch to comfort care. They vary according to the type of cancer and nature of available treatments, but in general they include when a patient has already been through three lines of chemotherapy or when their performance status — how well they can function in daily life — is poor.
Dr. Smith said most chemotherapy regimens had been tested only in patients who are relatively well, independently mobile and able to perform most of the tasks of daily life.
For those who are confined to a bed or a chair for half or more of the day, “it is time to think long and hard about continuing treatment,” he said. “It’s time to have an extensive discussion with patients about their goals and the risks and benefits of chemotherapy.”
He suggested that doctors “put everything in writing — here’s what you have, what we can do for it, what will happen with treatment and without it — so that everyone is on the same page,” eliminating the risk that wishful thinking colors what patients hear.
When faced with a patient who says, “I’ll do anything to live two minutes longer,” Dr. Smith said the doctor should ask: “What is your understanding of your illness? What would you like to do with the time remaining?”
For most people, he added, the time left would be far better spent putting their affairs in order, preparing their funeral or memorial service, repairing damaged relationships, leaving lasting legacies and saying their goodbyes.