A new study about end-of-life care sheds light on a “disconnect” between what physicians say they’d want for themselves and what they’re actually providing to their patients.
The study, released Wednesday by the Stanford University School of Medicine, found most physicians surveyed would choose a do-not-resuscitate or “no code” status for themselves if they were terminally ill even though they tend to pursue aggressive, life-prolonging treatment for patients facing the same prognosis.
Lead author Dr. VJ Periyakoil, a clinical associate professor of medicine and the director of the Stanford Palliative Care Education and Training Program, said the study revealed a disconnect that needs to be better understood.
“A big disparity exists between what Americans say they want at the end of life and the care they actually receive," she wrote in the study. "More than 80 percent of patients say that they wish to avoid hospitalizations and high-intensity care at the end of life, but their wishes are often overridden."
The new study, published in the journal PLOS ONE, looked at physicians’ attitudes toward advance directives, which give patients more control over end-of-life decisions by communicating care preferences. In addition to assessing whether doctors’ attitudes towards advance directives had changed in the last 23 years (they hadn’t), researchers surveyed more than a thousand doctors in 2013 to see what their own personal choices were regarding end-of-life care.
A group of 1,081 physicians was asked to complete a web-based advanced directive form and an advance directive attitude survey. A hefty portion of these doctors -- about 88 percent -- said they would chose “no code” or do-not-resuscitate orders for themselves. The “no code” or “choice not to prolong” statement reads as follows: “I do not want my life to be prolonged if the likely risks and burdens of treatment would outweigh the expected benefits, or if I become unconscious and, to a realistic degree of medical certainty, I will not regain consciousness, or if I have an incurable and irreversible condition that will result in my death.”
While the new study pointed out most doctors choose not to have their life prolonged if terminal, many patients are still receiving treatment at end of life.
A 2013 JAMA study of Medicare patients found that despite the fact most seniors want to die at home or in the home of a loved one, only a third actually do. Many more die in nursing homes, hospitals or intensive care units hooked to machines and feeding tubes. Of those who do make it to hospice care, one third are there for less than three days before dying. Until then, many are subjected to aggressive end-of-life treatment.
Or as the new study’s conclusion put it, “dying patients continue to be hospitalized and subjected to ineffective therapies that erode their quality of life and their personal dignity” while doctors “have a striking personal preference to forego high-intensity care for themselves at the end-of-life and prefer to die gently and naturally.”
Periyakoil said she understands what’s behind the disparity.
“Our current default is ‘doing,’ but in any serious illness there comes a tipping point where the high-intensity treatment becomes more of a burden than the disease itself," she said. “[But] we don't train doctors to talk [to patients about end of life] or reward them for talking. We train them to do and reward them for doing. The system needs to be changed.”
Dr. Bernardo Goulart, a lung, head, and neck cancer oncologist with Seattle Cancer Care Alliance and affiliate investigator with Fred Hutch’s Hutchinson Institute for Cancer Care Outcomes Research (HICOR), admits talking to patients about end-of-life care is not easy.
“It’s a hard topic to discuss,” he said. “It involves difficult emotions for the physician including guilt, a sense of failure, a sense of abandonment. I have a lot of ambivalent thoughts when I’m having a discussion about transitioning from aggressive cancer care to palliative hospice-type care. “
Lack of training may also be part of the problem, he said.
“It’s a failure of medical education on the part of physicians,” he said. “We’re not used to thinking that our interventions – as aggressive as they are – are limited and that death and dying is part of a process, not a failure. Palliative care is a transition of care and is also in the patient’s best interest when they express interest in not pursuing aggressive measures and dying at home.”
Sometimes, though, it’s more emotionally comfortable for doctors to simply dole out additional, albeit futile, treatment.
“It’s a lot easier for a physician to prescribe one more line of chemotherapy than it is to have a conversation about why you’re stopping therapy,” he said. “I can see how a physician could postpone this conversation and go for one more line of chemo instead of taking a bigger step, doing the heavy lifting and talking about end-of-life.”
Patient’s families can also influence a decision to pursue aggressive treatment at end-of-life instead of opting for palliative care which focuses on managing pain, providing emotional support and end-of-life planning.
“Physicians may want to act in the best interest of the patient but many times family members have a really hard time dealing with the loss of a loved one,” he said. “I had a patient just last week and we had a conversation that more treatment was not a good recommendation and hospice was best. The pushback I got was from the family, not the patient.”
Goulart agreed with Periyakoil in that the system needs to change. Even practical changes, he said, might make a big difference.
“Conversations about end-of-life care take significant amounts of time,” he said. “We can bill for a visit but we cannot bill specifically for an end-of-life conversation. I wonder if there should be a billing code for this. There certainly should be changes beginning with medical education and medical culture.
And changes around end-of-life conversations and care are definitely in the works.
Nine of southern California’s leading health care providers, including UCLA, jointly issued a set of recommendations last week to reduce suffering and promote greater dignity for patients approaching end of life. The guidelines call on doctors and other health care professionals to work with adult patients to plan in advance for end-of-life care that respects each patient’s values and goals and avoid treatments that can do more harm than good.
HICOR, created to find the best value in cancer care, is also researching palliative care practices and aggressive treatment at end of life to determine what provides the best quality of life and the most valuable experience for the patient – and their family – in the weeks before death.
“Death and dying is, unfortunately, part of the cancer experience and we should act with this knowledge,” said Goulart. “These are important steps towards more humanized medicine and medicine that meets the patients’ needs.”
Related stories:
- End-of-life decisions: 'This is absolutely about death with dignity'
- Disparity in breast cancer mortality between white and black women grows
- Walking the road with cancer trial participants
- About the Hutchinson Center for Cancer Outcomes Research
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has also written extensively about health issues for nbcnews.com, TODAY.com, CNN.com, MSN.com, Columns and several other publications. She also writes the breast cancer blog, doublewhammied.com.Reach her at dmapes@fredhutch.org.
