After several hospitalizations over recent years due to congestive heart failure and chronic obstructive pulmonary disease Barbara Bush (who also has Graves Disease) has elected to forego further medical treatment and instead focus on “comfort care,” a spokesperson for the Bush family said on Sunday. Since the announcement, which noted her “failing health,” Twitter has been lighting up with people sending good wishes and paying tribute to the 92-year-old former first lady.
Mrs. Bush may be nearing the end of her life as has been suggested, but doctors may take issue with assuming as much based on the term “comfort care.” The experts I consulted stressed that comfort care does not necessarily mean hospice care (for which the average patient qualifies if they have a very poor prognosis, and are expected to live not more than six months), nor does it mean a patient has decided to end any and all medical assistance.
Comfort Care Is A Form Of Medical Care, Not An Abandoning Of It
“I think that using the term ‘comfort care’ is a bit of a misnomer,” says Dr. Rodney Tucker, director of UAB’s Center for Palliative and Supportive Care. “Essentially when patients elect comfort care, they’re electing aggressive measures in terms of symptom control. It may be treatment for pain, shortness of breath, nausea and vomiting, anxiety, and so on. It also includes the location of care, so where the patient prefers, such as at home. But by all means comfort care is medical care.”
That comfort care is a form of medical care is a critical distinction that both Dr. Tucker and Dr. Vyjeyanthi "VJ" Periyakoil, an associate professor of medicine (primary care and population health) at the Stanford University Medical Center stressed in our conversations. I was under the impression that comfort care meant more or less cutting ties with your specialists and other doctors to instead surround yourself only with only essential caregivers, family and pain management assistance. Not so.
We know based on extensive science and research that when people feel better, they live longer.
“In the home [of someone who has chosen comfort care] there are often the same types of professionals that you see in a hospital,” says Tucker. “This could be a primary care physician doing home visits, a palliative care doctor, a respiratory therapist, a physical therapist, a psychologist, nurses and social workers. Any discipline you see in hospital, you’ll see in the comfort care approach outside it.”
Comfort Care Is Not Giving Up — Not By A Long Shot
While we don’t know the specifics of Barbara Bush’s situation, we know that she is forgoing future medical treatments, meaning that she’s no longer seeking to cure or reverse her condition but to instead focus her time and energy on “comfort, quality and dignity, and make sure her family is taken care of,” as Tucker frames it. Yes, this means she may refuse a medical intervention down the road, but no, it doesn’t mean she’s surrendering.
“There’s clearly a misconception among people when they hear that someone is electing comfort care and ceasing medical treatments that they’re giving up,” says Tucker. “But actually they’re just changing the goal and the focus of their care, and making a conscious decision to say, ‘This is how I will live this part of my life.’ They may live very vigorously in the joy and comfort that they find.”
They may even add some time to their life, as Dr. Periyakoil points out. “We know based on extensive science and research that when people feel better, they live longer,” says Periyakoil.
There’s clearly a misconception among people when they hear that someone is electing comfort care and ceasing medical treatments that they’re giving up. But actually they’re just changing the goal and the focus of their care.
A Caring Option For All People With All Types of Illnesses
The former first lady may have more priviliged access to medical services than the average patient, but virtually anyone who has medical insurance can get comfort care when in failing health. Moreover, you can get it even if you are not past the point of curative treatment. This is known as palliative care, and specialists like Periyakoil advocate beginning it as soon as you are diagnosed with a serious illness.
“There’s a false dichotomy that says you treat the disease and then you treat the symptoms in a piecemeal approach,” says Periyakoil. “Palliative care looks at the full impact of the disease on the person. So, for example, if you have heart failure, a cardiologist will look at your heart function and see how efficient the heart is at pumping blood and give you medicine to take, [etcetera]. But you may also experience air hunger, or a feeling of breathlessness, that the cardiologist won't typically think of treating, whereas we would, because we recognize that the heart is only one organ, but it’s the whole human we have to treat.”
Making The Experience Humane, Dignified and Graceful
It’s likely that Mrs. Bush is receiving this full body and mind approach in her present environment. In addition to the traditional medical staff you’d see in a hospital, the former first lady may also be enjoying the comforts of a massage therapist, a pet therapist, art therapist, music therapist and just about “anyone who can humanize this experience,” says Dr. Tucker, adding that some form of spiritual guidance is often integral, depending on the person’s beliefs.
“Really it’s about not only comfort, but also making sure your family is as comfortable as possible and has direction because this is a very difficult time for them,” says Tucker. “Barbara Bush has led a life of grace and dignity and I very much see this as a continuation of that, and of making her own decisions.”