Hospice: A Touchy Subject for Many

Many Americans, as they become elderly and ailing, don’t want to have to think about not being able to take care of themselves, but there is a time where this needs to be considered. It seems that it is typical to procrastinate or bury your head in the sand when it comes to matters that involve death and dying, and recent findings published this week found that even many patients that are terminally ill put off the conversation about end-of-life choices.

This recent study, one of the largest to date on this issue, found that approximately half of the 1,517 patients with metastasized lung cancer who were surveyed had actually discussed hospice care with their doctor or their healthcare provider within four to seven months of diagnosis. The vast majority of these types of patients do not survive for more than two years.

Hospice is care that can be given in a hospital, at home, or in a specialized facility that focuses on managing pain and emotional and spiritual needs, rather than trying to cure a terminal illness. It is a practical and compassionate approach for end-stage care. But it is also the last road taken, meaning that a patient must acknowledge their health status and relinquish hope and control.

This seems especially difficult for some races and ethnicities, with the probability of the discussion about hospice becoming even lower. Only 49 percent of the African-Americans and 43 percent of Hispanics had the conversation with their doctors, the study showed, when compared with the 53 percent of Caucasians and 57 percent of Asians.

The researchers also said that the longer the terminally ill patient was expected to live, the less likely the subject of hospice was brought up. Haiden Huskamp, who is a Harvard Medical School associate professor of healthcare policy and the study’s lead author, said, “Patients who had unrealistic expectations about how long they had to live were much less likely to talk about hospice with their doctor.”

This is considered an emotionally charged issue, and takes on a growing urgency as an estimated 90 million Americans live with serious and life-threatening illness everyday. This number is expected to more than double over the next 25 years as the baby boomer generation ages, according to a recent report presented by the National Palliative Care Research Center.

The researchers from Harvard combined the files of patients with cancer in California, Iowa, and Alabama, and then asked the patients whether a physician or other healthcare provider had recommend hospice care to them, or discussed end-of-life preferences for care with them. This study, which was funded by the National Cancer Institute and is being published in the Archives of Internal Medicine, did not go into the reason why this discussion did or did not happen.

Huskamp theorized that the patients who said that they had not discussed or even considered hospice may not have fully understood their prognosis, or they may be choosing to believe that a better outcome is possible. She also stated that, in general, doctors are not very well trained to handle such delicate conversations with their patients.

Dr. JoAnne Nowak, medical director of the Partners Hospice and Palliative Care Program in Boston, said that she is part of generation that graduated from medical school when the end-of-life care was not included in their study curriculum. She said that she spend fifteen years as a family physician, before she re-trained and switched her specialty to hospice care ten years ago. “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.”

However, this statistic is slowly changing, as more and more medical schools incorporate some training in this area into their core curriculum. Just last year, the national regulators officially recognized hospice and palliative care as a specialty that is board-certified. Still, Nowak said, most of the doctors find it easier to talk with a patient about options of chemotherapy, rather than to talk to them about their end-of-life choices and anxieties.

Annually, billions of dollars are spent in the United States on intensive treatments for older patients during the last six months of their lives, according to the 2008 Dartmouth Atlas of Health Care. Massachusetts is one of the states that ranks as one of the top 10 states for such intensive intervention, and below average for the number of hospice and palliative care programs. Some other studies have recently concluded that hospice care can lower the cost substantially for many terminal illnesses, and may often be more in line with what most patients would want.