What it means to enter hospice care as Jimmy Carter elects to stop medical treatment
Written by ABC Audio All Rights Reserved on February 20, 2023
(NEW YORK) — Over the weekend, former President Jimmy Carter entered home hospice care, the Carter Center announced.
The center said in a statement that the oldest living president, who is 98 years old, had elected “to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention” after several hospital stays.
“He has the full support of his family and his medical team. The Carter family asks for privacy during this time and is grateful for the concern shown by his many admirers,” the statement read.
Experts explained to ABC News what it means to enter hospice care and what it may entail:
What is hospice care?
Hospice care is a type of end-of-life care meant to maximize the comfort and quality of life of a terminal patient.
“Typically, hospice care requires a referral from a physician who agreed that hospice care is appropriate for the patient and so we certified that the patient’s life expectancy is six months or less, based on our best knowledge and data we have if the disease runs its expected course,” said Dr. Jay Bhatt, an internist and geriatrician in Chicago and an ABC News contributor.
Bhatt said a patient suffering from several conditions can enter hospice including cancer, dementia, kidney failure, recurrent infection and more.
“Entering hospice means your caregivers are focused on managing your symptoms…and it’s oriented around alleviating suffering, during that projected time of life,” he said.
Several needs are addressed when a patient is in hospice care including physical, psychological, social, and spiritual, according to the National Association of Home Care and Hospice.
Hospice care may be misconstrued as a process used to accelerate the worsening of someone’s condition so that they may pass, but that is not the case, Bhatt said.
“This is not intended to speed up the dying process or reduce their time that they may have,” he said. “It really is focused on addressing physical health, managing their symptoms that create suffering, [and] their emotional and spiritual health.”
What is included in hospice care?
Hospice care can include a broad set of services including physician care; nursing care; a home health aide; social work services; physical, occupational, and speech therapy; and bereavement services for the patient’s family, according to the NAHCH.
These services can help manage medication for pain or other conditions, supply emotional support for mental health needs and therapy for mobility that help alleviate suffering, Bhatt said.
“Hospice care at home relies primarily on the family or personally paid caregivers to provide that day-to-day care,” he said. “But you can have a nurse or physician on call 24 hours a day to help with medications for pain or trouble breathing [or] other symptoms.”
If symptoms become too difficult to manage, a person can receive inpatient hospice care at a facility.
While hospice care may be covered by employer-provided insurance or private insurance, it began being covered by Medicare in 1983.
According to the NAHCH, more than 1.6 Medicare beneficiaries received hospice services in 2019 with Medicare expense totaling about $20.9 billion.
Qualifying for hospice care
Experts told ABC News that it’s a complex process filled with hours of discussion before a patient can receive hospice care.
A hospice physician and a regular physician, if the patient has one, have to certify that a patient is terminally ill. The patient has to accept the care as opposed to care to cure their illness, and the patient has to sign a statement choosing hospice care.
“Clearly, the recognition is that Jimmy Carter lived an incredible life; we should all be so lucky to live a life that is so full, rich and rewarding,” said Dr. John Brownstein, an epidemiologist and chief innovation officer at Boston Children’s Hospital, and an ABC News contributor. “At the end of the day, it’s about patient-centered decisions and their wishes and in this particular case, I’m sure there’s been a lot of consultation with medical teams, and family.”
He continued, “These things are are complicated, you know, long conversations that require many layers of discussion within that, you know, reaching out very quick decisions that are, they’re done without, you know, without the guidance of the whole care team and family.”
How is it different from palliative care?
While hospice care and palliative care are often used interchangeably, they’re not the same, experts said.
Both are about offering compassionate comfort care, but patients in palliative care might have their symptoms treated as well as receiving treatment with the intent of curing their illness.
Additionally, while hospice care requires physicians to sign off, palliative care can begin whenever the physician and patient decide and at any stage or illness — and the illness is not required to be terminal.
“Hospice care is really focused highly on the comfort of that patient,” Brownstein said. “So, comfort care without any sort of intention for cure, whereas palliative care is broader ’cause it’s comfort care, but it could have some component of curative intent.”
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