After she was diagnosed with Stage IV breast cancer that had spread to her left lung, Gloria Bailey's doctors recommended she have a mastectomy followed by hormone therapy to fight the tumors that remained. She followed their advice, but had a nagging feeling about the regimen.
"The Lord was just telling me, 'They're not being aggressive enough,' " Bailey recalled. So she sought out a new team of oncologists at the Cancer Treatment Centers of America's Midwestern Regional Medical Center in Zion, Ill., more than 300 miles away from her home in Michigan. Those doctors suggested she undergo a bone marrow transplant, a harrowing ordeal that landed her in a coma.
Faith in a higher power can often lead to more aggressive treatment than is medically warranted, research is beginning to show. As a result, the nation's medical community is now grappling with the best way to bring God into the doctor-patient relationship without subjecting patients to needless suffering before they die.
In a study published today in the Journal of the American Medical Assn., researchers found that terminally ill cancer patients were nearly three times more likely to go on breathing machines or receive other invasive treatments if religion was an important part of their decision-making process. Such treatments didn't improve a person's long-term chances, however.
"There's a sense that by not going for life-prolonging care, they're letting God down," said Holly Prigerson, director of the Center for Psycho-oncology and Palliative Care Research at the Dana-Farber Cancer Institute in Boston and the study's senior author. "But the more aggressive care you get, the worse your quality of life in that last week."
Other recent studies have made similar connections. Religious cancer patients who had unsuccessful chemotherapy treatments were twice as likely to want heroic end-of-life measures, according to a report last year in the Journal of Clinical Oncology. A 2005 study in the Annals of Behavioral Medicine found that patients with advanced-stage lung or colon cancer were more likely to want CPR, mechanical ventilation and hospitalization if they believed in divine intervention. They were also less likely to have a living will.
And in a survey of 1,006 randomly selected Americans, published last year in the Archives of Surgery, two-thirds said religious faith would influence their decisions about medical treatment if they were severely injured. More than half said God could heal patients whom doctors thought were beyond the reach of medicine.
Bailey attributes her continued survival a decade after her bone marrow transplant to the grace of God. Doctors never gave her a prognosis; they only said the treatment could buy her more time.
"Had the Lord not sent me there," said the 66-year-old grandmother, "I don't think I would be alive today."
Faith can influence medical decisions in a variety of ways. For patients who believe only God can decide when life ends, the decision to remove a ventilator or decline CPR may be considered improper interference. In that context, refusing treatment is sometimes seen as the moral equivalent of euthanasia.
And for some, extending life by days or even hours buys precious time for prayers to be answered.
"They're giving God every opportunity to operate as they believe that he can or will, which obviously leaves the door open for miracles," said the Rev. Percy McCray Jr., director of pastoral care and social services at Midwestern Regional Medical Center, where Bailey was treated.
Doctors and deities
In light of these attitudes, healthcare providers are finding that their paramount goal of reducing suffering can be directly at odds with the wishes of devout patients.
Orthodox Jewish patients often express the belief that life is worth living no matter how debilitated the patient, and Christians sometimes welcome the opportunity to express their faith by enduring pain, said Betty Ferrell, a registered nurse who researches end-of-life care issues at City of Hope in Duarte.
"We've had patients who said, 'Well, God suffered. Jesus suffered. So if I suffer, it's going to make me more like God,' " she said.
Ferrell recalled the case of a terminally ill cancer patient who baffled her caregivers by embracing the prospect of an agonizing ending.
"She said, 'I want my sons to remember that I fought until the end,' " Ferrell said. The patient wanted "her children to see she would not abandon her faith, even when things got tough."
Some healthcare providers are now reconsidering what it means to have a "good death."
To very religious patients, avoiding pain and suffering may not be the priority, Prigerson said. Of the 345 cancer patients who were followed until their deaths in the AMA Journal study, "patients who wanted aggressive care and got it had lower ratings of physical distress," she said. The study was funded by the National Institutes of Health and a grant from the nonprofit Fetzer Institute to study spirituality at the end of life.
Doctors need to talk with their patients about their religious views to learn what is really motivating their preferences for aggressive care, said David Magnus, director of the Center for Biomedical Ethics at Stanford Medical School in Palo Alto. Sometimes the patient who opts for drastic measures does so because he is in denial about the severity of his condition and his prospects for making a meaningful recovery, Magnus said.
Patients and their families need to understand that refusing treatment is not the same as choosing death, he said. Turning off a ventilator, Magnus said, is similar to Jehovah's Witnesses' refusal of blood transfusions on religious grounds. Physicians must also be willing to talk with patients -- and their religious advisors -- about the role of prayer in the healing process, including its limitations, Magnus said.
"Prayer is not the same as conjury," he said. "It's not a magic trick. It's not like if you want something and you pray for it, you'll get exactly what you want. No major religion says that." The timing of these conversations can be crucial to the patient's quality of life, said one expert on religion and medical care.
"We don't do enough talking earlier in the trajectory of illness," said Dr. Ray Barfield, a pediatric oncologist who teaches Christian philosophy at the Duke Institute on Care at the End of Life.
When patients must make treatment decisions in the midst of a medical crisis, he said, "the most obvious theological straw to grab onto is, 'Well, maybe God will still perform a miracle, so we're going to keep at it.' Bad theology can lead to a lot of suffering."
Accepting death, on the other hand, can provide an opportunity to get one's religious affairs in order and make the most of remaining time with family and friends.
One study of parents whose children were dying of cancer found that the sooner the family accepted that the child would not recover, the more they enjoyed their final months with their ailing son or daughter, Barfield said.
Cost of treatment
If doctors are more successful at bridging the divide between religious beliefs and end-of-life care, the financial savings could be significant.
In a study published last week in the Archives of Internal Medicine, Prigerson and her colleagues found that patients who discussed their wishes for end-of-life care ahead of time accrued $1,876 in medical expenses in their final week of life compared with $2,917 for patients who didn't. They were also less likely to be in physical distress, less likely to die in a hospital and more likely to be getting outpatient hospice care. "One-third of the Medicare budget goes to the last year of life, and 80% is for the last month," Prigerson said. "Most of that is being on a ventilator or from an ICU stay."
There was no difference in survival time between the two groups.Copyright © 2015, The Baltimore Sun