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Terminally ill patients delay talk of hospice

Study finds many have unrealistic outlook

By Kay Lazar
Globe Staff / May 26, 2009
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Americans tend to procrastinate when it comes to matters involving death and dying, but a Harvard Medical School study published yesterday finds that even many terminally ill patients and their doctors put off conversations about end-of-life choices.

The study, one of the largest to date on the issue, found that only about half of the 1,517 patients with metastasized lung cancer who were surveyed had discussed hospice care with their physician or healthcare provider within four to seven months of their diagnosis.

The vast majority of such patients do not survive two years.

Hospice care - which can be delivered in a home, hospital, or other facility - focuses on managing a patient's pain and emotional and spiritual needs, rather than trying to cure the terminal illness.

For some ethnicities and races, the likelihood of a discussion about hospice was even lower. About 49 percent of African-Americans and 43 percent of Hispanics had a conversation with their physicians, the study found, compared with 53 percent of whites and 57 percent of Asians.

The longer a terminally ill patient expected to live, researchers discovered, the less likely the subject was to come up.

"Patients who had unrealistic expectations about how long they had to live were much less likely to talk about hospice with their doctor," said Haiden Huskamp, a Harvard Medical School associate professor of healthcare policy and the study's lead author.

The emotionally charged issue takes on growing urgency as an estimated 90 million Americans live with serious and life-threatening illnesses. That number is expected to more than double over the next 25 years as baby boomers age, according to a recent report from the National Palliative Care Research Center.

The Harvard researchers combed the files of cancer patients in California, Iowa, and Alabama, and then asked patients whether a doctor or other healthcare provider had recommended hospice care, or discussed end-of-life care preferences with them.

The study, funded by the National Cancer Institute and being published in the Archives of Internal Medicine, did not delve into the reasons why such discussions may or may not have taken place.

Huskamp theorizes that patients who said they had not discussed or considered hospice may not have fully understood their prognosis, or may be choosing to believe a rosier outcome. She also said that, in general, physicians are not well-trained to handle such delicate conversations.

Dr. JoAnne Nowak, 52, medical director of the Partners Hospice and Palliative Care program in Boston, said she is part of a generation that graduated from medical school when end-of-life care was not included in the curriculum. She spent 15 years as a family physician, before retraining and switching her specialty to hospice care in 1999.

"You have a lot of doctors out there who weren't trained in these conversations about end of life or breaking any kind of bad news, whether it's a prognosis or difficult treatment," she said.

That is slowly changing, as more medical schools incorporate some training into the core curriculum.

Just last year, national regulators officially recognized hospice and palliative care as a board-certified specialty.

Still, Nowak said, most physicians find it easier to talk with a patient about chemotherapy options, rather than end-of-life choices and anxieties.

"What are your fears? Your hopes? What do you need to accomplish in the time that remains? Those are long and difficult conversations and doctors don't have the time," she said.

Nor are they adequately compensated, said Nowak and others. Health insurance companies typically reimburse doctors by the number of procedures they do, not by the time spent with patients.

Billions of dollars are spent each year in the United States on intensive treatments for older patients in the last six months of their lives, according to the 2008 Dartmouth Atlas of Health Care.

Massachusetts ranks as one of the top 10 states for such intensive intervention, and below average in the number of hospice and palliative care programs.

Some studies have recently concluded that hospice care can substantially lower costs for many terminal illnesses, and may often be more in line with what patients want.

"As baby boomers get older and see how their parents are dying, they don't want that type of death," said Rigney Cunningham, executive director of the Hospice & Palliative Care Federation of Massachusetts, and a member of the state panel.

"I don't think anymore that death is a taboo conversation with these consumers," she said. "I think people are just struggling with how to start the conversation."

Kay Lazar can be reached at klazar@globe.com.