WHEN IT COMES to making decisions about aggressive medical treatments for the terminally ill, a recent study suggests that if quality of life is the goal, less is actually more.
The study, published in the Aug. 13 Archives of Internal Medicine, used data from the Coping with Cancer Study, which followed 396 terminally ill cancer patients from 2002 to 2008. Through questions asked to the patients and their caregivers, the study pinpointed nine factors that most influenced quality of life: intensive care stays, hospital deaths, patient worry, religious prayer or meditation, site of care, feeding tube use in the final week, pastoral care in the hospital, chemotherapy in the final week, and the relationship between patients and their physicians.
“There’s almost a dose-response relationship between aggressive medical procedures—like feeding tubes, ventilators and resuscitation—and impaired quality of life in the last week,” says Holly Prigerson, a psycho-oncologist at Dana-Farber Cancer Institute in Boston. “The single most important factor was whether a patient spent the final week in the intensive care unit (ICU) or at home.”
These services offer information about your options for end-of-life care.
AARP has a collection of end-of-life care resources for caregivers. 877-333-5885
American Society of Clinical Oncology has information on end-of-life care, palliative care and advanced cancer care planning.
Growth House Inc. has a searchable collection of educational resources for end-of-life care.
Hospice Net Inc. offers information for the terminally ill and caregivers on pain, hospice services, living wills, bereavement, children and other topics.
National Cancer Institute offers resources on communication in cancer care, advance directives, the last days of life and more. 800-4-Cancer
National Hospice and Palliative Care Organization provides information on caregiving, pain management, hospice care, advance directives, financial planning and more. 800-658-8898
On the flip side, a strong doctor-patient relationship was one of the most important factors that contributed to a better quality of life. “It is really important that patients feel their doctors respect them and see them as a whole person,” says Prigerson. “Patients don’t want to feel as though their doctor is abandoning them just because there are no more medical treatments left to give.”
Other factors that improved quality of life included the patients’ spirituality, their reported sense of peacefulness, and feelings of social support. “It’s more about spiritual care and interpersonal relationships at the very end,” says Prigerson. You can’t talk with a feeding tube in, and most patients think that it’s best to die peacefully among family, she says.
Straight Talk Can Empower Patients
Research suggests that frank end-of-life discussions can be good for patients.
Many doctors think that giving a patient bad news will have negative repercussions. But a study published Aug. 1 in the Journal of Clinical Oncology found that patients typically don’t respond the way doctors fear they might, debunking many of the myths that cause doctors to not initiate end-of-life discussions with terminal cancer patients.
In a related commentary, Thomas J. Smith, a medical oncologist and hospice and palliative medicine specialist at Johns Hopkins University in Baltimore, and his colleagues point out that patients who reported having end-of-life discussions weren’t more depressed or worried and also chose to have less aggressive end-of-life care, as well as more and earlier hospice enrollment.
Smith also notes that this finding supports earlier research which showed that a frank end-of-life discussion doesn’t take away hope, feel misleading, or offend patients. It also doesn’t decrease their survival. “What it does do is allow them to plan advance directives, plan trips, get their financial concerns in order, resolve any family issues, and make spiritual peace before they get too sick,” says Smith. “It also helps them take advantage of hospice and palliative care and decide whether they want to die intubated in the ICU [intensive care unit] or peacefully at home.”
So what can patients do? “Don’t be afraid to ask for information—in fact, insist on it,” says Smith. If the doctor is vague, Smith suggests patients pointedly request, “Help me understand from a planning perspective what to expect over the next six months or a year.”
Bad news is never easy to hear, but often it can come as a relief, says Smith. “A lot of times patients will say, ‘That’s bad, but it’s a lot better than I expected.’ ” And the more they know, says Smith, the more patients can set realistic goals for managing pain and for spending the time they have left.
These findings point to the value of advance care planning. “It’s important to figure out what your goals are,” says Prigerson. “If your goal is to live as long as humanly possible despite anything, that’s fine. But if you want to avoid an ICU death … it’s important to talk to your doctors and family and make sure your advance care planning is consistent with your goals.”
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