Carter’s Choice Calls Attention to the Benefits of Hospice
Former President Jimmy Carter’s choice to seek hospice care inevitably has exposed the myths and misunderstandings about just what hospice is.
Dr. Ahasta Johnson, for instance, noted the tone of surprise in media coverage when Carter’s niece was asked to bring him broccoli and cheese soup. By then, he’d been in hospice for eight days.
“A lot of people think that when a person goes into hospice, they’re about to die,” says Dr. Johnson, who’s in charge of hospice care at Einstein Medical Center Montgomery – Jefferson Health. “That certainly is the case a lot of the time – because people choose to go into hospice late – but not always. People on hospice continue to do normal things.”
Hospice is not just a momentary interlude on the way to the cemetery. It can last a few days, weeks or months. According to the National Hospice and Palliative Care Association, three quarters of patients remain in hospice for three months or less.
President Carter’s family did not give details about his current health status. In recent years, he has been treated for advanced melanoma and had several falls.
“Choosing hospice means accepting that there aren’t more treatments that are going to be helpful in prolonging your health or improving the quality in your life,” Dr. Johnson says.
Even if additional curative interventions exist, a terminally ill patient may want to avoid the disruption and pain of treatment, and live out their days in relative peace.
Medication and Emotional Support
“Each hospice patient gets a specific plan for them and their circumstances about where they’ll receive their care, who will provide it, what medicines they should be taking and what durable medical equipment and what kinds of supports and assistance they’ll need,” Dr. Johnson says.
A hospice patient receives medication that will treat symptoms, lessen pain and discomfort, and will also receive emotional support for them and their families through their final days. They can receive hospice care in a hospital or stand-alone facility, but most patients choose to be at home.
It’s sadly ironic to Dr. Johnson that sometimes patients continue treatment because they want to live longer, when they actually might live longer in hospice, avoiding the possible complications and side effects that can accompany treatment.
“I wish people weren’t as afraid of hospice as they tend to be,” she says. “And I wish as a culture we didn’t hold death in such a disdainful way. Death is a part of living and we’re all going to have our time, and some of us are lucky enough to get a warning so that we can choose where to focus our last bit of time.”
For the most part, Dr. Johnson says, hospice patients “tend to feel resolved. They’ve made a decision.”
Dr. Johnson was attracted to hospice when she was a resident in internal medicine and pediatrics at Einstein and did a rotation with a palliative care physician. “I had the pleasure of rotating with her and sharing her patients and I was in awe of what she did.”
And, no, she says, being a hospice physician isn’t sad and depressing. To the contrary.
‘The Most Rewarding Field of Medicine’
“That’s a common misnomer,” she says. “A lot of people think it’s all doom and gloom. But it’s probably the most rewarding field of medicine that I’ve been able to be part of. I feel like I can make an impact in the life of a person and a family.”
Dr. Johnson says witnessing death on a constant basis hasn’t changed her philosophy. “I don’t know that it changes how I see life. It may be why I see life the way I see it
“Every day is a blessing, none of us know how much time we have left. It’s promised to no one and I think it’s important to make the most of the days we do have, to be as present as we can be in our current day and make the most of things.”
President Carter may be the first person of prominence to publicly choose hospice over extended medical care. Sometimes, a decision by someone of his stature can influence public sentiment. But in this case, Dr. Johnson isn’t sure it will.
“I don’t know that we’ll get more calls or referrals or requests when public figures go onto hospice,” she says. “I do think we definitely get engaged in more conversations surrounding our work.”
The topic was brought up, for instance, at the Quaker meeting service Dr. Johnson attends, the weekend after Carter entered hospice care. “Many of the members know I’m a hospice doctor.”
What will change peoples’ minds, Dr. Johnson says, is experiencing a loved one who‘s had a positive experience with hospice.
“When a family member has walked away from a completed hospice experience and can have a positive view and an acceptance of death and be in a good space despite loss, I think it’s a beautiful thing,” she says.