Barbara Bush turns to ‘comfort care’. What does it mean?

Editor’s note: This article was updated at 7:10 pm, Tuesday, April 17. The update includes information on the passing of former first lady Barbara Bush. 

Former first lady Barbara Bush’s decision to forgo additional medical treatments and seek “comfort care” came in just shy of today’s National Health Care Decision Day. Mrs. Bush passed away on Tuesday, April 17 at 92 years old.

Sunrise Hospital and Medical Center’s Director of Hospice and Palliative Medicine Leslie Hunter-Johnson says the observance is a global initiative to make individuals aware that they have the right to choose what they do and don’t want regarding their healthcare.

“Our focus is on what the patient wants, not what the medical caregiver should consider,” said Hunter-Johnson, who holds a doctoral degree in nursing (DNP). “We make sure that individuals have pain and symptom management and the knowledge to know they have a limited life expectancy, in some cases, so they can plan for their bucket list or whatever it is they need to plan for.”

“We’re transparent and talk openly and our patients really appreciate that,” she added. “Realistically more people should be referred to hospice and palliative, or comfort care, earlier on instead of at the end of their life.”

Dr. Hunter-Johnson transitioned to the field of hospice and palliative after a long career in intensive care unit nursing where she realized the need to give patients options of care.

“I would help treat patients who had devastating events and they’d go to a nursing home and the family would say, ‘they would never want this’,” she recalled. “So, my option at the end of life, is to give people options, including taking away the barriers.”

Dr. Hunter-Johnson sat down with HCA Healthcare Today to educate the public about the importance of advance healthcare decision making.

What is palliative care?

Palliative care, or comfort care, is a philosophy of care. It’s appropriate at any age and any state of a chronic disease situation. My specialty is taking care of the symptoms that are associated with the chronic disease so that patients can focus on the rest of their life. So, as a symptom management expert, I try to take the burden off for symptoms or conditions like:

• shortness of breath,
• pain,
• anxiety,
• insomnia, or
• anything that may be distressing when going through an illness.

If someone chooses palliative care, does that mean they are giving up?

No, and that’s a huge misunderstanding. As hospice, there’s nothing more we can do to patients from their disease and we focus on the time they have left. Palliative care takes care of the pain and symptom management while they’re going through the disease process including curative care, meaning their underlying disease process can be cured. A patient doesn’t have to have a medical “death sentence” to have palliative care. We can provide it at any point.

What’s the difference between palliative (comfort) care and hospice?

A patient does not have to be terminal to have palliative care. Although hospice provides the palliation, which technically means “to soothe”, and symptom management, a patient doesn’t have to be terminal to have palliative care. He or she can receive comfort care at any age and any stage of a disease. If someone requests comfort care, it simply provides a better quality of life for the rest of his or her life, not the end of life. So, hospice and palliative care are similar arms but the focus at hospice, is for someone with less than a six month life expectancy and palliative can actually have a curative focus, if necessary.

Do all hospitals offer palliative care?

According to the last research, approximately 70 percent of hospitals provide this type of care. It was implemented at Sunrise Hospital and Medical Center in 2010 and has grown exponentially every year since then.

When should someone ask for palliative care?

Ideally at the time of diagnosis. We can come on board to help ride the storm, manage the symptoms, and coordinate with all of the other caregivers. That’s really when comfort care should happen – at the time of diagnosis.

Who makes up the comfort care team?

They are specialty trained individuals – physicians, nurses, nurse practitioners, social workers and chaplains. It’s a very multi-disciplinary approach.

Where does the comfort care team treat patients?

They develop a plan that’s appropriate for the patient and their family. They can go to their homes or be treated in a hospital setting. We focus on the family and the patient’s goals. Our care is not healthcare provider-driven. All of our expertise is to help the family meet their goals.

Who benefits from palliative care?

We take care of the patient and the family as a unit. Everybody involved in the individual’s care can benefit.

What kind of illnesses does the care team help treat?

Very similar to hospice, we have a lot of patients who have cancer diagnoses, heart disease, respiratory illnesses, chronic obstructive pulmonary disease (COPD), or pneumonia, for example. Also, we can treat an individual with a neurological injury such as a stroke or one of the progressive neurological events like Amyotrophic lateral sclerosis (ALS). Anything that you can think of, we can provide assistance for.

Have you had the conversation?

According to the American Journal of Preventive Medicine, only 26 percent of the 7900 people surveyed had an advance directive. Lack of awareness was cited as the most common reason why. We challenge you to educate your loved ones about the importance of making their wishes known.

First, have the conversation with your family.  If you need guidance with this, go to Caring Connections or The Conversation Project to help facilitate a discussion.

Next, complete your forms.  The Five Wishes booklet at Aging with Dignity is a great resource. Also,

Finally, be sure to bring a copy of your completed advance directives to your treating physicians.

Dr. Leslie Hunter-Johnson serves as the director of hospice and palliative medicine at Sunrise Hospital and Medical Center in Las Vegas. Sunrise Hospital is an affiliate of HCA Healthcare.