On Monday, when it was announced that first lady Barbara Bush was choosing “comfort care,” many people wondered what that meant. What’s the difference between “comfort care” and palliative care, and what about hospice care?
Bush, who died Tuesday and whose funeral will be Saturday in Houston, caused people to talk about end-of-life care and the decisions they might make for themselves.
Choosing comfort care means that you are choosing treatment for comfort instead of a cure. If you had a disease like cancer, you would be deciding that you are no longer going to pursue chemotherapy or radiation treatments. Instead, you would pick quality-of-life treatments such as pain relief. “Comfort care is not a withdrawal of medical care,” says Dr. Elizabeth Kvale, associate professor and head of palliative care at Dell Medical School at the University of Texas at Austin. “It’s a refocusing.”
In a March 2005 file image, former first lady Barbara Bush listens to her son, President George W. Bush, speak during a stop at the Lake Nona YMCA Family Center in Orlando, Fla. Joe Burbank/Orlando Sentinel
Instead of curative treatments, doctors focus on treatments to provide a good quality of life. “You’re forgoing life-extending treatments,” she says.
People often confuse comfort care with hospice care or palliative care.
Palliative care provides a team approach to a person with a life-limiting illness. It’s not for people who have a chronic illness, and it’s more than just pain management. People on palliative care don’t have to have an estimated time in which their disease will lead to death, which is true in hospice care.
At the center of palliative care is the patient and the family. Supporting them is a team of physicians, nurses, nurse practitioners, a social worker and a chaplain.
Someone who is receiving palliative care can continue to receive curative treatments as well, says Dr. Bob Friedman, who is the chief medical officer at Hospice Austin and President of Austin Palliative Care. “We collaborate with providers on continuity of care,” he says, as well as consider more than pain management or treatment management. “Often the medication management is the easiest part,” Friedman says. “It’s dealing with the emotional, spiritual issues and social perspective of what’s going on in the home. It’s as important, if not more important, than medication management. It takes more time and patience.”
Kvale thinks of palliative care as an additional layer of support for patients that are getting treatment for a life-threatening illness.
During the time a patient falls under palliative care, the team will talk to the patient about advance care planning and their end-of-life wishes, even though the end of life is not imminent.
There might come a point during palliative care, where it might be in the patient’s best interest to stop curative treatment. Then, if they have been given a medical prognosis of having six months or less to live with their illness, they can choose hospice treatment.
With hospice treatment, they also get a team approach and it’s patient-centered as well. The team focuses on the quality of life remaining, and the patient’s physical, social, emotional and spiritual needs. If they don’t have advance care directives, this would be the time to make their wishes known in writing.
Often with hospice and sometimes with palliative care if that’s the patient’s choice, the team works on helping the families and the patient change the expectations and the definition of hope. We have the “fight the good fight” mentality, Friedman says, and sometimes the role of the palliative care team can be about helping the patient and family accept what’s to come and prioritize enjoying the rest of their life. “We don’t tell people what to do, we educate,” Friedman says. The team will explain the risks and benefits of continuing with curative care, but it’s the patient’s choice whether to continue with it, he says.
Another difference between hospice care and palliative care might be the kinds of pain medication prescribed, Friedman says, based on the patient’s wishes. With palliative care, the patient might want to be fully aware and engaged, which means that the amount of pain medication given will be less. With hospice patients, comfort might be the ultimate goal, which might mean a higher dose of medication or a different kind of medication. Also some medications, which limit some of the side effects a patient might be experiencing, wouldn’t be appropriate for someone who is expected to live a long time because of additional side effects.
It’s important that families talk about their wishes before a life-limiting illness. Hospice Austin is now offering The GIFT Project — Giving Instructions for Tomorrow — that can help families talk about their end-of-life wishes, as well as do advanced care planning and fill out advance directives. Hospice Austin hosts a workshop the third Thursday of the month from noon to 1 p.m. at its offices, 4107 Spicewood Springs Road. hospiceaustin.org/advancedirectives Hospice Austin also can bring the program to community groups as well as to medical offices.
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Who cannot receive palliative or hospice care?
Someone with a chronic illness or an illness that is not impacting their quality of life.
Who can receive palliative care?
Someone with a life-limiting illness, who wants help managing symptoms and well-being.
Who can receive hospice care?
Someone with a life-threatening illness that a physician can attest will cause them to die within six months if nothing else is done.