Advance care planning defines a patient’s wishes should they be unable to speak for themselves or die. ACP includes a living will, a power of attorney for health care, or life-support instructions.
It’s estimated less than one in 10 Americans have completed advance care planning. Even in the setting of incurable diseases, in which death is anticipated, planning is relatively rare and occurs in about one-quarter of the patients.
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 engaged in advance care planning. They found something more surprising – patients without advance care planning prior to stem cell transplantation were almost three times more likely to die during or after the transplant when compared to patients with ACP.
The study is 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.
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.
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. Of the 343 patients, 172 did not have advance care planning.
The purpose of the study was to show that talking about ACP does not impact patient outcomes. Physicians and patients are uncomfortable discussing ACP for various reasons. One reason may be the unwillingness of the health care provider to broach the issue of ACP because of fear that a discussion of ‘negative’ information could have an adverse effect on the patient.
“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, University of Nebraska Medical Center 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.”
“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.”
Researchers caution that their findings do not suggest a cause and effect relationship, meaning not having a plan doesn’t mean the patient will die, just as having an ACP doesn’t guarantee survival. Researchers say there are multi-factors that effect outcomes of transplantation.
“We want to be very clear that we do not feel this is the reason for poor outcomes. We do not know the nature of the relationship between having ACP and outcomes,” Dr. Ganti said.
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.
“We should all be talking about these issues, not just patients with cancer or those about to undergo a transplant,” said Stephanie Lee, M.D., associate member of the Fred Hutchinson Cancer Research Center and one of the paper’s authors. “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. 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. Lee said.
Dr. Loberiza said researchers think 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.
Researchers said though social workers commonly engage in ACP discussions at health care institutions, physicians are among the best advocates for instituting change in the clinical care setting, so it’s important they’re advocates of ACP.
“Physicians are not trained in a structured way to talk to patients about death and dying,” Dr. Loberiza said.
For Bill Jurgens, 54, doing advance care planning was part of dealing with cancer. April 15, 2005 was the beginning of his struggle with 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 git-go, 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.
UNMC is the only public health science center in the state. Its educational programs are responsible for training more health professionals practicing in Nebraska than any other institution. Through their commitment to education, research, patient care and outreach, UNMC and its hospital partner, The Nebraska Medical Center, have established themselves as one of the country’s leading centers in cancer, transplantation biology, bioterrorism preparedness, neurodegenerative diseases, cardiovascular diseases, genetics, biomedical technology and ophthalmology. UNMC’s research funding from external sources now exceeds $80 million annually and has resulted in the creation of more than 2,400 highly skilled jobs in the state. UNMC’s physician practice group, UNMC Physicians, includes 513 physicians in 50 specialties and subspecialties who practice primarily in The Nebraska Medical Center. For more information, go to UNMC’s Web site at www.unmc.edu.