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Patient Mindset Found Important to Participating in Advanced Care Planning

Carlson, Robert H.

doi: 10.1097/01.COT.0000368446.05669.e3

NEW ORLEANS—Cancer patients who typically respond to problems by looking for solutions were found to be more likely to participate in advanced care planning than those with emotion-based responses, according to the results of a study by researchers from the University of Nebraska Medical Center and Fred Hutchinson Cancer Research Center reported here at the American Society of Hematology Annual Meeting.

The study (Abstract 72) analyzed responses from patients with hematologic malignancies about to undergo transplant.

Engagement in advanced care planning, as well as discussions about life support, may be reflective of a patient's realistic or pragmatic view of clinical outcomes, the authors suggested.

The implication is that advanced care planning might be improved by guiding patients toward a mindset of solving a problem—how to prepare for life-threatening situations—and away from the emotional issues involved in such momentous decisions.

“To increase engagement [in advanced care planning], the positive and practical benefits should be emphasized and the emotional aspects should be de-emphasized,” said first author Fausto R. Loberiza, Jr., MD, MS Associate Professor at the University of Nebraska Medical Center.

The study is part of the HEMA-COMM (Hematology Communications) observational study designed to evaluate doctor-patient communication with data collected through patient and physician surveys, patient interviews, and audiotaping and coding of the consultations.

Dr. Loberiza reported that 51% of study patients (149 of 293) with hematologic malignancies were “positive for ACP (advanced care planning)” at the time of hematopoietic cell transplant, compared with 10% of the general population.

The study defined “positive for ACP” as having completed a living will and having a health care proxy; “negative for ACP” was defined as lacking one or both.

Patients who participated in advanced care planning were older than those who did not (56 vs 52 years old), had higher income, had more leukemia or myelodysplastic syndrome, and had received previous treatments.

The researchers also found that patients who lacked advanced care planning had a higher mortality rate, “suggesting that the group least likely to have ACP is the group most likely to need it,” Dr. Loberiza said.

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Coping Patterns

In the study, psychosocial well-being scores were comparable for patients with or without advanced care planning. The difference, Dr. Loberiza said, was in their coping patterns.

“Patients with ACP use problem-focused coping as opposed to emotion-focused coping,” he said, defining problem-focused coping as doing something to alter the source of stress. Engagement in ACP, as well as discussions about life support, may be reflective of a patient's realistic or pragmatic view of clinical outcomes.

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‘Not Just a Piece of Paper’

Advanced care planning is a means by which patients can communicate their values, so that the values can be incorporated into care, he said: “It's not just a piece of paper. It's a discussion about your life, why you're doing this treatment, what your goals are.”

Also at the meeting, the study's senior author, Stephanie J. Lee, MD, MPH, Associate Member of Fred Hutchinson Cancer Research Center and Associate Professor at the University of Washington, noted in an interview that one of the team's earlier observational studies had found that patients who did not have living wills or a health care proxy had higher mortality rates.

And it was clear in this new study that patients more likely to need advanced care planning are most likely to need to invoke it—“exactly the population at risk for not having thought about these things,” Dr. Lee said.

But Dr. Loberiza added that in the study, patients who had poorer health were those more likely to discuss advanced care planning with their physicians. “Patients who have the view that they probably have a poor prognosis are more likely to discuss it,” he said. “That's what we mean by a more realistic or pragmatic view.”

He said some patients diagnosed with any life-threatening disease don't want to think about it. Whether to engage in ACP or not becomes an emotional issue.

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A Gift to Families

A palliative medicine specialist asked to comment on the study voiced some concerns about its recommendation to “de-emphasize” the emotional aspects of ACP findings.

Jay Thomas, MD, PhD, the Arthur M. Coppola Family Chair in Supportive Care Medicine at City of Hope, said that advanced care planning has emotional aspects that may still require a problem-focused approach.

He said he considers advanced care planning to be “a gift that patients can give to their loved ones, a concept full of emotional aspects.

“ACP is a process that, first of all, gives patients the chance to decide in their own mind what quality of life is, what their values and goals are, and how those decisions would affect the medical choices they make for themselves,” he said, in a telephone interview after the meeting. “The second part is communicating these choices to their loved ones who may be in a position to make the decisions in the future.”

Dr. Thomas calls this “a gift patients can give to their families so surrogate decision-makers don't have to guess what the patient would want or choose. That could potentially relieve a lot of the sense of guilt and potentially avoid family strife when they have to make difficult decisions, such as ‘unplugging grandma.'”

He said he was also concerned about the study's definition of not having a classification in which the patient has either a durable power of attorney for health care, or a living will, or neither. Only patients with both documents were considered to have an advanced care plan.

“Having one or the other is in the same negative category here as having neither, and that potentially could have affected their outcomes,” he said.

That needs to be clarified, Dr. Thomas said, cautioning that he has seen only the details of the study as reported at the ASH meeting, with the slide presentations and abstract, and that the full published article when that comes might answer his concerns.

He did applaud the study for assessing the facet of advanced care planning in cancer because ACP is so important in any advanced illness.

Dr. Thomas said one important finding in the study was that going through the planning did not appear to worsen patients' perceptions of their quality of life nor contribute to anxiety or depression.

“Hopefully, this finding will help alleviate clinicians' fears of engaging a patient in this important process,” he said.

© 2010 Lippincott Williams & Wilkins, Inc.
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