Most doctors don't talk about end-of-life issues with their cancer patients when those patients are feeling well, a new survey has found. Nor do they talk about them until treatments have been exhausted. Those delays mean patients might not be able to make truly informed choices early in their treatment.
The study, published online Jan. 11 in the journal Cancer, surveyed 4,188 physicians about how they would talk to a hypothetical cancer patient with four to six months to live. A majority of respondents (65%) said they would discuss prognosis, but only a minority said they would discuss do-not-resuscitate status (44%), hospice (26%) or preferred site of death (21%) at that time. Rather, they would wait until symptoms were present or until there were no more treatments to offer.
Current guidelines, from the National Comprehensive Cancer Network, a not-for-profit alliance of 21 of the world's leading cancer centers, say that such conversations should be initiated whenever a patient has been given less than a year to live, if not at diagnosis.
Doctors gave various reasons for not following the guidelines. Some didn't want to dash patients' hopes; some wanted to continue treating patients. In addition, said lead author Dr. Nancy Keating of Harvard Medical School: "There's at least some evidence to suggest that patients don't want to hear about these things."
Here's a closer look at why end-of-life discussions are important.
If done sensitively and as part of ongoing medical care, discussing whether to resuscitate, when to seek hospice care and where patients want to spend the last days of their lives can actually empower patients, rather than making patients lose hope, say Keating and other palliative care experts. Instead, the talks help patients gain some control over treatment and over the final stage of their lives.
"My own view about this is that the whole approach to dying is really an approach to living," says Dr. Katherine Kahn, a UCLA physician and co-author of the new study. "The more we can make these discussions about end of life part of a larger set of discussions with patients about how they approach medical care and how they approach life, the better we can honor their medical wishes when it comes time."
To do this, patients and doctors need to accept the facts, says Dr. Michael Levy, an oncologist at Fox Chase Cancer Center in Philadelphia. He chaired the panel that crafted the cancer network guidelines.
Only 15% of patients with Stage 4 cancer have a viable chance at a cure, he says, and even in those patients, only 50% are cured. "That means that 92.5% of patients with advanced disease will die of their cancer," Levy says. "So you've got to just talk about it."
Patients may not fully understand the implications of additional chemotherapy or aggressive interventions. Further chemotherapy can limit the number of days in which they feel well enough to enjoy the company of friends and loved ones. And interventions such as cardiopulmonary resuscitation often don't work as well as people expect. Less than 10% of cancer patients who get CPR recover enough to leave the hospital, according to a 2007 review published in the American Journal of Hospital Palliative Care.
A study published Jan. 10 in the Journal of Clinical Oncology found that patients who watched a six-minute video explaining lifesaving procedures, hospitalized care and palliative care made much different choices than those patients who didn't watch the video.
Of 23 brain cancer patients who watched the video, 91% chose care designed primarily to keep them comfortable rather than basic hospital care or life-prolonging care. The latter includes CPR and ventilation. Of 27 subjects who heard a description of the different care levels but didn't watch the video, 22% chose comfort care, 52% chose basic care and 26% of patients chose life-prolonging care.
Research also has shown that informing patients about end-of-life care can reduce medical costs. (See related story.) Moreover, nurses and family members reported more physical distress and worse quality of death in the uninformed patients.