Ineffective communication, discontinuity of care may explain disparities

A new study of racial disparities in end-of-life (EOL) care revealed that black cancer patients' treatment preferences were less likely to be observed than were white patients' preferences, according to researchers from Dana-Farber Cancer Institute.

Some black patients who had opted not to be resuscitated or put on a ventilator in a life-or-death crisis received the treatment anyway, and died in an intensive care unit. Conversely, white patients who had expressed a preference for aggressive care in end-of-life discussions with a doctor were three times more likely to receive it than were black patients who had voiced the same wishes.

"End-of-life care discussions appeared to be more effective in ensuring that white patients' treatment preferences were honored," said Holly Prigerson, PhD, senior author of the report in The Journal of Clinical Oncology. The study is posted on the journal's web site and will be published in a future print edition.

"We are not saying that black treatment preferences were ignored," she emphasized. "Black patients did want, and did receive, more aggressive care than whites. The disparity was in the effect of treatment preferences on care received — not that black preferences didn't matter."

The study, which Prigerson and colleagues undertook to explore previously reported racial disparities in end-of-life care, such as the use of hospice and desire to undergo intensive treatments in hope of prolonging life.

Holly Prigerson, PhD

"None of the white patients who reported the completion of a do-not-resuscitate order, or a DNR, order at baseline subsequently received intensive care in the last week of life," said Prigerson. "This did not prove to be the case for black patients. DNR orders did not significantly protect black patients from intensive end-of-life care in this study."

She said the black-white disparity in adherence to advance directives may be linked to gaps in communication, some of which resulted from discontinuities in care that may have been more prevalent in the treatment of black patients.

For example, the researchers identified a few instances where DNR orders completed for black patients fell through the cracks because their informal caregivers (friend or family member) changed over the course of their illness, or because a critically ill patient was treated at a different hospital from the one that normally provided their care.

In such cases where documentation was lacking, doctors forced into quick decisions felt obligated to do everything possible for the patient, even if the situation seemed hopeless, said Prigerson.

The researchers, including lead author Elizabeth Trice Loggers, MD, of Dana-Farber and scientists at several other institutions, interviewed 234 white and 68 black patients with advanced cancer. The initial interview included questions about the patients' preference for end-of-life care; the level of trust in their physicians; whether they had had an end-of-life care discussion with a doctor; and whether they had completed a DNR order. The patients' informal caregivers were interviewed separately.

Each patient was monitored until their death, which on average was 3.5 months later. A patient was considered to have received intensive end-of-life care if he or she had undergone cardiopulmonary resuscitation (CPR) and/or been placed on a ventilator in the last week of life, followed by death in an intensive care unit (ICU).

Based on the initial interviews, black and white patients were similar in their trust of their physicians and having had an end-of-life discussion with the doctor.

Blacks tended to prefer intensive end-of-life care, were less likely to report that a DNR order was completed for them, and much more likely to be "positive religious copers" — believing that their outcome would ultimately be determined by God.

None of these factors, the scientists said, explained black-white disparities in end-of-life care. Instead, it appears that "social forces," such as disruptions in continuity of care and cultural differences that impaired patient-physician communication, might be to blame.

Prigerson said the study's findings highlight the need to improve clinical communication between black patients and their oncology care providers. Enhanced communication would help to ensure that patients appreciate the risks and benefits of intensive care and that the providers are better informed of their patients' wishes, she said.

The cases in which patients' medical information wasn't available in critical situations underscores the need for improvements, said Prigerson, such as a centralized medical recording system where code status could be universally accessed.

"We are continuing to analyze the data," she added, "and we hope to identify strategies to ensure that patients and healthcare providers make informed end-of-life decisions."

The research was supported by grants from the National Institutes of Health.

Dana-Farber Cancer Institute (www.dana-farber.org) is a principal teaching affiliate of the Harvard Medical School and is among the leading cancer research and care centers in the United States. It is a founding member of the Dana-Farber/Harvard Cancer Center (DF/HCC), designated a comprehensive cancer center by the National Cancer Institute. It is the top ranked cancer center in New England, according to U.S. News & World Report, and one of the largest recipients among independent hospitals of National Cancer Institute and National Institutes of Health grant funding.