Patients without advance care plans more likely to die

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.”

Stephanie Lee, M.D., associate member of the Fred Hutchinson Cancer Research Center and one of the paper's authors, said the study is meaningful for everyone. “We should all be talking about these issues, not just patients with cancer or those about to undergo a transplant. Preparing for the possibility of one's premature death is relevant for everyone. Advance care planning also addresses how the family will be financially supported, who will be the children's guardian, and communicates your personal philosophies about life and death so your family can speak for you if you can't.

“What is important is that you talk about these issues before a crisis happens,” she continued. “I can't tell you how many times I've heard families say, ‘We never discussed the possibility that something like this would happen.'”

Dr. Loberiza said researchers believe that people who are likely to engage in ACP are intrinsically different in terms of their perception of health and their health behavior. “Maybe people who have plans are more health conscious or maybe more likely to promote things for good health, although this is not proven,” he said.

He believes physicians need to be advocates of ACP since they are the best advocates for instituting change in the clinical care setting. “But physicians are not trained in a structured way to talk to patients about death and dying.”

Bill Jurgens, a 54-year-old man who underwent a stem cell transplant one year ago, is an example of someone who chose advance planning. His struggle began in the spring of 2005 with medical treatments, surgeries, complications, and then relapse. In October 2006, he had a stem cell transplant and was again given a 40 percent chance of survival.

“From the very beginning, we've wanted to know my chances of survival,” Jurgens said. “It made sense to plan. You can't deny what might possibly happen to you. You can't do that to your family. If they know my wishes, it makes it less difficult for them.”

Researchers are planning a follow-up study to help provide insight into the issue, as well as develop an effective intervention to increase engagement in ACP.

Other authors of the study were UNMC oncologists, Julie Vose, M.D.; Marcel Devetten, M.D. R.; Gregory Bociek, M.D.; James Armitage, M.D.; Philip Bierman, M.D.; Lori Maness, M.D.; and Elizabeth Reed, M.D.