How Jimmy Carter has changed the conversation around hospice
Former President Carter’s public disclosure in February that he was entering hospice care — where he remains nearly six months later — is shifting the perception of end-of-life care for patients and their families.
Many assumed the 98-year-old former president was on his deathbed, but his family says he has continued to enjoy ice cream and stay up to date on the work of the Carter Center.
Ben Marcantonio, interim CEO of the National Hospice and Palliative Care Organization, told The Hill this week that the belief that hospice care is a short-term situation “can be a very common understanding.”
“The main marker identified in the benefit [of hospice care] is six months or less,” Marcantonio said. “Yet it also says that’s if the course of the illness or illnesses run their normal course. And so, it’s not like a definitive marker.”
The average length of hospice care is roughly 90 days, which Marcantonio notes includes situations where it only lasts a few days or less. So, while some people may be surprised by how long Carter has been in hospice, his situation falls within the norms of what many patients experience.
Those who work in the hospice realm say Carter has really opened up the conversation for a general population reluctant to think about issues surrounding death and end-of-life care. Davis Baird, Director of Government Affairs for Hospice said that Carter’s decision to publicly disclose his choice to go into hospice has served to highlight the multitude of benefits that patients enjoy.
While the Carter Center is not providing any additional information about the former president’s health and declined to comment for this story, the rare anecdotes from family members have brought attention to the purpose of hospice care, which is to ensure a higher quality of life after a patient has decided to no longer pursue medical treatment.
Baird noted that treatment for terminal illnesses can be extremely depressing for an individual who would rather be doing more enjoyable things with their time. Transitioning to a space where their goals and desires are prioritized over treatment can result in the patient and their family feeling better.
Marcantonio hopes that Carter’s openness encourages others in similar situations to consider hospice care. He noted that just more than half of people who are eligible for hospice are receiving it.
And the sooner that eligible people elect to enter hospice, not only do they experience a higher quality of life, but it’s less costly overall, a recent study has found.
“We’ve never heard anyone say, ‘Gosh, I wish I had less time on hospice,’” Marcantonio said. “The more we can get past those myths … and those misperceptions that we mentioned, the more people will get the care that they need when they need it.”
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