The Register Citizen (Torrington, CT)
Bush choice may foster end-of-life discussion
When former first lady Barbara Bush died Tuesday, people spoke of the 92-yearold’s legacy and her impact on the culture. For the most part, it was the sort of talk that circulates any time a well-known person dies.
But there was something different about this conversation. Much of the talk about Bush wasn’t about the way she lived — it was about the way she died. On Sunday, the Bush family announced its matriarch was in failing health and no longer pursuing medical treatments intended to cure her illness.
Her family’s decision to make that public statement was hailed by many in the medical community as a potential game changer when it comes to how Americans talk about death and dying.
“The fact that it was Barbara Bush doing it was particularly relevant,” said Dr. Terri Fried, a professor of medicine at the Yale University School of Medicine. “She was well-known for being outspoken about things that were important to her. I think the intention (of announcing her decision on medical care) was to put this into the public conversation.”
The Bush family released Barbara’s decision the day before National Healthcare Decisions Day, which was Monday. The day is intended as an occasion to educate people about the importance of discussions on advanced care planning.
“I think that is extraordinary, to set (the announcement) at this time and in this way,” said Dr. Donna Coletti, medical director of palliative care services at Greenwich Hospital. “It says ‘This is a conversation that needs to be elevated.’ ”
Comfort vs. cure
Many in the health community have pleaded for people to have early discussions with their families about the kind of medical care they want, should they become seriously ill. These conversations can include how long the loved one wants to receive medical care intended to cure an illness, as opposed to care that keeps the person comfortable.
Fried stressed that choosing comfort doesn’t mean care stops altogether, but that the focus shifts.
“The decision to pursue comfort care (usually) comes at a point where the benefits of intervention typically no longer outweigh the problems or burdens,” she said.
For instance, sources said Bush suffered from chronic obstructive pulmonary disease and congestive heart failure. COPD affects lungs and breathing, and Fried said late-stage care for the illness could have included putting Bush on a respirator. However, that would mean she couldn’t speak with her family. Thus, Fried said, it’s reasonable that there would be a certain point in Bush’s care when she wouldn’t want to use such a device.
The Catholic church has also come out in support of palliative care, while being careful to distinguish it from assisted suicide. Catholic Health Association of the United States has published the guide “Caring for People at the End of Life,” which talks about these decisions. The guide states that the church has no “hard-and-fast rule regarding specific medical procedures but rather urges prudent decisions regarding the benefits and burdens of medical treatments for the patient.”
Talking too late
Experts recommend that conversations about end-oflife care happen when a person is healthy enough to make his or her wishes known, but that’s often not the case, Fried said.
“We know these discussions tend to happen so late that the person is sick enough that they aren’t able to participate,” she said.
This is problematic for the patients and their families, said Dr. Kristin Edwards, medical director of palliative care at Bridgeport Hospital.
“Often the conflicts we see are with people who never had that discussion in advance,” Edwards said. “It’s very stressful to make that decision on someone else’s behalf.”
Patients’ wishes can’t be respected if they aren’t expressed to family members or others authorized to make heath care decisions. For instance, roughly 70 percent of people say they want to die at home and 70 percent end up dying in health facilities, according to The Conversation Project, a Bostonbased program dedicated to helping people talk about their wishes for end-of-life care.
Conversation Project Director Kate DeBartolo joined the chorus in hoping the public airing of Bush’s end-of-life choices leads to more conversations on this topic.
“We do hope that this will be an example to other families to let their loved ones decide what they want as they approach the end of their lives,” she said by email.
Elizabeth Beaudin, senior director of population health for the Connecticut Hospital Association, echoed DeBartolo’s thoughts. About a year ago, the CHA launched the Care Decisions Connecticut initiative, a statewide collaboration to empower patients to make their own end-of-life care decisions.
“Although we are saddened by the death of Mrs. Bush, we are grateful that she and her family chose to make public her decision to seek comfort care in the last days of her life,” Beaudin said in an email. “When famous people elect to share their healthcare decisions with the public, it can help fuel public discussion and awareness about these important issues.”