Opting out of treatment
One year after my mother's hysterectomy for uterine cancer, a scan taken in July 2011 showed two small spots in the pelvic region that were most likely the return of her cancer. She received the news on her 84th birthday.
Her doctor recommended a biopsy and then 18 weeks of chemotherapy treatments, followed by radiation. She would lose her hair, she might struggle with nausea, and the radiation held some risks due to other organs in the pelvic area.
Sitting with my mother in an office in New York City, across the desk from her oncologist, I heard her say, in a calm and confident voice: "I don't want any further treatment. I had the surgery, and now I'm done. I've had a great life. What happens to me happens."
My mother's resolve was so strong and unwavering that my sister and I didn't try to argue. Mom looked great, and she felt well. Even when a friend in remission from cancer urged her to try treatment, she wouldn't budge. "No way, forget it," she said. "Nobody lives forever. I haven't given up. I'm just facing it realistically."
There has not been a definitive study on how many Americans with aggressive cancer refuse treatment. However, there are enough, particularly elderly people, that Time magazine dubbed them "refuseniks."
A study released in 2009 that looked at 400 patients with advanced cancer between 2002 and 2008 showed that 32 percent of the patients older than 65 wanted less-aggressive treatments than what was available to combat their illnesses.
"Older people wanted less and got less-aggressive care," said Holly Prigerson, director of the Center for Psychosocial Epidemiology and Outcome Research at the Dana-Farber Cancer Institute in Boston, which conducted the research. Patients, she said, frequently opted for "quality vs. quantity of life."
Her studies have also shown that people who are more religious want more treatment than those who are not strong in religion and that African Americans want more-aggressive treatment than whites. Women with young children want treatment more than elderly women.
While patients and family members may not all agree on whether someone should have aggressive treatment late in life, people do feel strongly that the patient's desires should trump all other factors.
A study conducted by the Pew Research Center in 2005 found that 84 percent of those surveyed approved of laws permitting the end of life-sustaining medical treatment if that was what the patient desired. The study also showed that 53 percent of respondents would stop treatment if they were facing a terminal illness and in pain. Even more, 57 percent, said they have discussed medical decisions and end-of-life medical issues with their parents.
For many of us, these are conversations we would like to avoid.
"We have been a death-denying, youth-oriented culture," said Michael Levy, vice chair for the Department of Medical Oncology and director of the Pain & Palliative Care Program at Fox Chase Cancer Center in Philadelphia. "The American public is still not fully connecting with the reality that the mortality of being a human is 100 percent."
Doctors and medical ethicists agree that all patients must be given accurate and complete information so they can make the best decisions, even when the information is tough to hear. They also need to understand the concept of palliative care, which the World Health Organization defines as care that "improves the quality of life of patients and their families facing the problems associated with life-threatening illness."
"We see people who refuse treatment, and sometimes it is appropriate and sometimes it isn't appropriate," said Stephen Wallace, a Virtua oncologist and co-medical director of the Virtua Fox Chase Cancer Program. "My responsibility is to give people accurate information to make the right decision for themselves."
Wallace finds that, sometimes, elderly patients have an outdated view of chemotherapy, which has improved in recent decades. Doctors must also make sure a patient isn't depressed or just confused about treatment options.
Last week, we gathered in New York and celebrated my mother's 85th birthday. She is feeling well, and she is still comfortable with her decision. At times, she says, "I'm living on borrowed time" or "I might not be here next year."
But in the last year, she has seen her oldest grandson get married, watched her youngest grandson head off to college, enjoyed many fine dinners with her only granddaughter at their favorite Manhattan restaurant, and traveled to visit me in Haddonfield and my sister in Wisconsin. She is hoping she still feels healthy and strong this fall when her first great-grandchild is born.
There is no way to know if, later, any of us will feel regrets about Mom's decision. Right now, she feels good, so the decision seems correct. But one thing is clear: It is her decision.
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