Researchers at the University of Nebraska Medical Center (UNMC) in Omaha and the Fred Hutchinson Cancer Research Center in Seattle found only half of patients undergoing stem cell transplantation had advance care plans - documents such as living wills, power of attorney for health care, or life-support instructions - and those without plans were three times more likely to die during or after surgery.
Study findings are published in the Dec. 10 issue of the Journal of Clinical Oncology, the journal of the American Society of Clinical Oncology, the world's largest association of clinical oncologists.
“We thought our study would show there was no difference in survival whether there was an advance care plan or not, but that was not the case” said Fausto Loberiza, Jr., M.D., associate professor at UNMC and senior author of the paper. “We wanted to be able to show that advance care planning doesn't affect outcomes so it's okay to talk about it.”
Researchers noted that physicians and patients are uncomfortable discussing ACP for various reasons, including the fear that discussion of “negative” information could have an adverse effect on the patient. Initially, the purpose of the study was to show that talking about ACP does not impact patient outcomes.
“Our study demonstrated that lack of engagement in ACP is associated with adverse outcomes following stem cell transplantation,” said Apar Ganti, M.D., UNMC assistant professor and first author of the study. “Patients least likely to engage in ACP are the ones most likely to face poor outcomes and are most likely to need advance care planning.”
The one-year study evaluated 343 patients over the age of 19 who underwent transplantation between 2001 and 2003 at UNMC for cancers of the blood such as leukemia, lymphoma, multiple myeloma and myelodysplastic syndrome. Stem cell transplantation is an aggressive, high-risk and potentially life-saving procedure for certain cancers. Average one-year survival rate ranges from 55 to 95 percent. About 100,000 to 200,000 people undergo stem cell transplants each year.
Of the 343 patients in the study, 172 did not have advance care planning. Only one in ten Americans are estimated to have an advance care plan, defined as documents that define a patient's wishes should they be unable to speak for themselves, or die.
Researchers said the need for advance care planning is great, especially before transplantation while the patient is competent. Benefits include autonomy in decision-making, congruence between personal values and end-of-life actions, decreased burden on family and health care providers as wishes are known, and possible decrease in costs. Decisions such as when to stop treatment and focus on palliative care, also are common concerns of cancer patients.
But researchers also caution the study's findings do not suggest a cause and effect relationship between advance planning and survival. In other words, Dr. Ganti said, having an ACP does not guarantee survival.
“We want to be very clear that we do not feel this is the reason for poor outcomes,” he said. “We do not know the nature of the relationship between having ACP and outcomes.”