Terminally ill patients delay talk of hospice-5/26/09 Globe
Copied below are excerpts from a Boston Globe article on the reluctance to discuss hospice perhaps due to the patients' unrealistic outlook.
http://www.boston.com/news/local/massac ... f_hospice/
Terminally ill patients delay talk of hospice
Study finds many have unrealistic outlook
By Kay Lazar, Boston Globe Staff
May 26, 2009
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. ...
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.