Barbara Bush, Comfort Care and National Dialogue About End of Life

Former First Lady Barbara Bush died on April 17, 2018, at age 92. She will be remembered for many reasons, including her push to improve national literacy, being the matriarch of an influential political family, and her earnestness and candor. And now, following her highly-publicized final days, Mrs. Bush will also be remembered for her decision to cease medical treatment and opt solely for comfort care (also known as palliative care).

Credit: White House Photo Office, courtesy George Bush Presidential Library and Museum/ via Wikimedia Commons

The choice to publicly announce her decision is important for numerous reasons. She brought to the American psyche the idea that it is vital for terminally ill or elderly people to communicate their desires and preferences to their loved ones regarding end of life. In doing so, she also brought palliative care and its ramifications added to the topical list for national discourse.

It may seem obvious that we should be vocal about our wishes regarding end of life. In fact, according to a 2013 study by The Conversation Project, nine out of ten Americans believe it’s important to have discussions about both their own and their loved ones’ end-of-life wishes. However, only 30 percent actually had those conversations.

“Too often, people don’t speak up,” says Barbara Rose, MPH, RN and Senior Project Administrator of Community Programs at Hospice of Cincinnati, “or they wait too long to let their families and doctors know how they want to live out the remainder of their lives…Or the family disagrees with the patient’s choice, which then results in undue stress and tension at the worst possible time.”

It’s safe to say that conversations about dying and end of life are difficult and awkward. The fact is that death is still very much a taboo topic in the United States. We don’t want to make family members uncomfortable, or we don’t think it’s the right time.

However, it is necessary to communicate our wishes about end of life, whether they be our own or the desires of our loved ones who are dying. Being honest makes everything a little easier in the long run. By announcing her decision publicly, Barbara Bush helped solidify this notion for many Americans.

The Issue With ‘Comfort Care’

Mrs. Bush, whether intentionally or not, brought comfort care and end-of-life preferences to the nation’s attention. Her decision to opt for comfort care meant that aggressive tactics to prolong her life would end. This, of course, meant that she would die very soon afterwards.

People had various reactions to the news. Some lauded her bravery, others were saddened that she chose to forgo curative treatment. (She was suffering from congestive heart failure and advanced chronic obstructive pulmonary disease, or COPD.)

Unfortunately, many people seem to associate comfort care with “giving up” and throwing in the proverbial towel. However, this is solely the result of policy and semantics.

Ravi Parikh, M.D. believes terminally ill patients shouldn’t have to choose between treatment and comfort.
Credit: philly.com

Ravi Parikh, M.D. and fellow in hematology and oncology at the University of Pennsylvania, wrote a noteworthy article about Mrs. Bush and the problem of assuming the term “comfort care” means a total cessation of medical care. He writes that the medical establishment does a great disservice to people by dividing medical and comfort care so stringently.

“When physicians such as me divide care into ‘medical treatment’ and ‘comfort care,’” writes Dr. Parikh, “we ignore that we should focus on both comfort and medical treatment at the same time.”

For instance, he mentions that patients have to forgo curative treatment such as chemotherapy when they decide to enter hospice under current Medicare policy. Dr. Parikh argues that we should focus on securing patients options to both prolong life and provide comfort.

Trying to Change Perception

In the United States, many doctors and lay people believe that palliative care is synonymous with being at death’s door — that it is only provided in the waning days of someone’s life. And it appears this was true in Barbara Bush’s case. But it does not have to be that way for everyone.

Many pioneers in the palliative care “movement” have dedicated a lot of time to changing public ideas about comfort care. Diane Meier, director of the Center to Advance Palliative Care and a MacArthur Grant recipient, believes that palliative care is “appropriate from the point of diagnosis of a serious illness, whether you’re going to live with that illness for 10 years or 10 days.”

Dividing medical care and comfort care so that patients have to choose between one or the other doesn’t make sense. Many times, people undergoing serious treatment are not comfortable. Chemotherapy is one example. Most chemo patients will be severely fatigued and in great pain. Yes their lives are being prolonged; but at what cost?

“The point of medical treatment is to make patients comfortable, both mentally and physically,” writes Dr. Parikh. “Thus, comfort care shouldn’t be a choice for patients; it should be the default, whether someone is in the middle of chemo or on his deathbed.”

He mentions that he hopes Mrs. Bush spent her final months with family, doing what she loved. “But,” he writes, “if she had the experience that most of my patients have, she likely missed an opportunity to be comfortable well before she chose comfort care.”

Barbara Bush’s decision to go public about her choice to opt solely for comfort care helped to stimulate national conversation regarding both end-of-life honesty and palliative care. It’s vital that we continue to have these dialogues.