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Kelly Trevino, Ph.D. The biggest barrier to high-quality end-of-life care for patients with blood cancers may be unrealistic expectations, a new survey in the Journal of Clinical Oncology found.

For patients with solid-tumor cancers, standards for quality end-of-life care include not receiving chemotherapy in the last two weeks before death, and not being intubated in the final month.

Doctors caring for patients with blood cancers like lymphoma or leukemia believe the same standards can apply to them, too.

But most of those who responded to the survey said the reasons blood cancer patients may not get this kind of quality end-of-life care are because patient or doctor expectations are too high and because doctors fear taking away a patient’s hope.

“Unlike most solid malignancies, where advanced (stage IV) disease is incurable, many advanced (blood) cancers remain potentially curable, which does make their situation at the end of life unique,” said senior author Dr. Gregory A. Abel, director of the Older Adult Hematologic Malignancy Program at Dana-Farber Cancer Institute in Boston.

“This lack of a clear distinction between the curative and (end of life) phase of disease for many blood cancers may serve to delay the transition to appropriate end of life care, thus impacting quality,” Abel told Reuters by email.

The researchers mailed 30-item surveys to 209 hematologic oncologists in 2015 and received completed surveys from 349. Half the doctors were over age 52 and three-quarters were men.

The doctors labeled as “acceptable” or “not acceptable” several standard end-of-life quality measures plus two new quality measures specific to blood cancers.

At least three quarters of the doctors all agreed that hospice admission more than seven days before death, avoiding chemotherapy for at least two weeks before death, and avoiding intubation or cardiopulmonary resuscitation for at least a month before death were acceptable measures of good end-of-life care, researchers reported in the Journal of Clinical Oncology.

“Studies have demonstrated benefits of hospice such as improved quality of life for cancer patients near the end of life as well as reduced risk of psychiatric complications for bereaved caregivers; reduction of intensive care (e.g. intensive chemotherapy close to death) has also been shown to be associated with improved quality of life for patients near the end of life,” Abel said.

But these measures only happen with clear conversations between physicians and their patients regarding prognosis, especially as prognosis can be fluid in patients with blood cancers, he said.

“As the most common barrier cited was patient’s unrealistic expectations about cure or prolonged life expectancy, providers can help address this barrier by having timely and recurrent prognostic and advance care discussions with patients well before their death is clearly imminent,” he said.

This study didn’t consider actual end-of-life outcomes, only doctors’ opinions, noted Kelly M. Trevino of the Weill Cornell Medicine Center for Research on End-Of-Life Care, lead author of a commentary accompanying the new study.

“I think having guidelines can be very helpful, and the important thing is those guidelines are informed by data,” Trevino told Reuters Health by phone.

“We should not extrapolate from this one paper that these are the guidelines that practitioners should follow,” she said.