Off The Record
Sending Prayers for Jimmy Carter In Hospice Care
At the time, former President Jimmy Carter, then 90 years old, believed he had only weeks to live after learning that the melanoma cancer had spread to his brain.
However, his doctors were ready to give him a more optimistic prognosis.
Carter stated that his medical staff had given him reason for optimism. Soon after, he addressed the media to discuss his cancer diagnosis and treatment.
“They did an MRI and found that there were four spots of melanoma on my brain. They are very small spots — about 2 millimeters, if you can envision what a millimeter is,” Carter said at his press event at the Carter Center in Atlanta on August 20, 2015.
Carter continued by explaining the treatment plan, which includes surgery, chemotherapy, and an immunotherapy called Keytruda, which stimulates the immune system to attack cancer.
When Carter was given Keytruda, it was just starting to make headlines around the country as an innovative new way to combat cancer.
Doctors believe that Carter’s successful treatment is the reason he has lived so long.
How Jimmy Carter has changed the conversation around hospice
The news that former president Jimmy Carter has entered hospice comes as no surprise. The 39th president has decided to enter hospice care following multiple hospitalizations, according to a statement provided by The Carter Center.
The grim announcement made in February that former President Carter had entered hospice care, where he remains nearly six months later, is changing the way patients and their families see hospice care.
Despite widespread speculation that the 98-year-old former president was nearing the end of his life, his family reports that he is still actively engaged in activities such as eating ice cream and following the progress of the Carter Center.
According to interim CEO of the National Hospice and Palliative Care Organization Ben Marcantonio’s recent interview with The Hill, this misconception about hospice care being a temporary solution “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.”
Marcantonio points out that the average length of hospice care is about 90 days, which includes cases where it lasts for only a few days. While Carter’s length of stay in hospice may be unusual compared to other patients, it is actually quite typical.
According to hospice professionals, Carter has helped break the taboo on discussing mortality and final care with the general public.
“I don’t think we can understate the significance of someone as prominent and well-respected as Jimmy Carter … openly and publicly making that decision,” said Davis Baird, director of government affairs for hospice at the National Association for Home Care & Hospice.
According to Baird, the many advantages of hospice care have been brought to light by Carter’s decision to make it public.
“Just the positive experience he’s having is, I think, really important for the public to have that model,” he said. “These things often happen behind closed doors. Other celebrities that use hospice — you know, whether it’s an old movie star, a sports star or someone — you often find out after they passed away that they were on hospice, and the journey isn’t articulated.”
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.
The Carter Center is not providing any additional information about the former president’s health and declined to comment for this story.
It was reported at the time of Carter’s hospice admission that the decision to admit him had been taken after a string of brief hospitalizations for an unspecified disease.
Experts in hospice care say that this is a common decision for people who are sick of being hospitalized over and over again.
Marcantonio said the thought process for many patients is: “We don’t want to keep on this cycle of returning to hospitals or to seek some sort of other medical interventions to prolong life. Rather, we want to focus on quality of life and alleviating any discomfort, pain, any sorts of emotional challenges that might come with this process.”
Another widespread misunderstanding, according to Baird, is that a hospice patient will see a rapid deterioration in health throughout their stay. As a matter of fact, he noted, many people stabilize once they are no longer in the “ringer” of the healthcare system.
Baird pointed out that people who would rather be doing other things with their time may find terminal disease therapy to be quite discouraging.
The patient and their loved ones may experience relief once they are transferred to a setting where their priorities, rather than treatment, are given first priority.
Carter, the longest-lived U.S. president, is nearing a crucial milestone for patients like him as he completes his fifth month in hospice care.
Medicare recipients who have been receiving hospice care for longer than 180 days will need to be re-evaluated for continued eligibility after six months.
After six months, Medicare will no longer cover the expense of hospice treatment unless it is recertified by a hospice medical director or hospice doctor.
The results of such assessments are not always good news for the patients concerned.
“If that patient is not, for example, showing fast enough decline in their medical profile, sometimes the contractors will come and take a look at that hospice and say, ‘Oh, this person’s not declining fast enough.’ So, you know, they weren’t eligible,” Baird said.
If this occurs, hospices may face an audit that could result in the denial of all claims related to a certain patient.
“It’s not something they like to do very often, but it does happen,” Baird said.
Recertification of hospices is a routine administrative step because determining a patient’s terminal illness is a “extremely inexact science.”
Marcantonio expresses his hope that Carter’s candor will motivate others in similar circumstances to look into hospice care.
He said that little over half of those who are qualified for hospice care actually receive it.
A recent study indicated that the sooner hospice is chosen by eligible patients, the better the quality of life and the lower the total cost of care.
In March, researchers at the National Opinion Research Center (NORC) at the University of Chicago reported that Medicare spent $3.5 billion less on hospice patients than if they had not entered hospice.
The study also indicated that “increased satisfaction and quality of life, improved pain control, reduced physical and emotional distress, and reduced prolonged grief and other emotional distress” were reported by patients and their families regardless of the length of time the patients spent in hospice.
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“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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