Jimmy Carter has opted for home hospice care. Here's what that means.
What exactly is hospice care, and how do patients decide they’re ready to begin receiving it? Yahoo News spoke with an expert to help demystify end-of-life care.
Former President Jimmy Carter has decided to “spend his remaining time at home” and receive hospice care, the Carter Center announced on Saturday.
The 98-year-old Carter has overcome a myriad of health obstacles over the last decade, including brain cancer, liver surgery and hip replacement surgery. Now the longest-living president is opting to spend his final days at his home in Plains, Ga.
“After a series of short hospital stays, former U.S. President Jimmy Carter today decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention,” a statement read. “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.”
Although hospice care is not uncommon in the U.S. — with 1.6 million patients receiving it in 2018, according to the Centers for Disease Control and Prevention — Dr. Sunita Puri, program director of the Hospice and Palliative Medicine Fellowship Program at the University of Massachusetts Chan Medical School and author of “That Good Night: Life and Medicine in the Eleventh Hour,” told Yahoo News that hospice care is often misunderstood.
“I think this dichotomy between medical intervention and hospice care is a false dichotomy, and it's actually a continuum of care,” Puri explained.
Puri spoke with Yahoo News to help demystify hospice and end-of-life care. Some responses have been edited for length and clarity.
Yahoo News: What is hospice care?
Dr. Sunita Puri: I like to think of it as intensive comfort-focused care. It's provided with the goal of minimizing the physical, emotional and spiritual suffering that patients and their families experience when somebody has six months or less to live. Hospice can be provided at home, which is where the majority of hospice care takes place, but it can also be provided at a facility like a nursing facility and sometimes in a standalone hospice facility.
One thing that is very important for people to know is that hospice care is medical care. It is a medical intervention, and it is one that is taking into consideration the totality of one’s experience with serious illness and the suffering associated with it.
How does a patient (or their family) and doctors decide to begin hospice care?
That is usually a conversation between physicians and their patients and the family based on a couple of things. One, when we approach the point where either options to treat the primary disease are not working or there are no options left to treat the primary disease, that’s when people start having discussions instead of focusing on the disease, focusing on the treatment of symptoms. And it’s also very possible that at any point in their illness, a patient might say, “I understand that there may be more treatment options, but it is my goal to focus on living well and having my symptoms managed for as long as I have to live.” So there’s kind of the discussion of prognosis or life expectancy, which is part of it, but the other interwoven elements are about suffering, quality of life and how somebody wishes to spend their time.
Who provides hospice care?
Hospice care is provided by agencies, usually. For example, I work in a system where we don’t have our own hospice agency, so it’s very common for whoever your primary medical team is to refer you to another organization that provides hospice. There are doctors, nurses, spiritual care providers and social workers involved, and sometimes there can be music therapists or physical therapists or occupational therapists, depending on the agency and the patient’s needs.
What happens during hospice care?
When you start receiving hospice services, there is a team who will visit your home, and usually the nurse is the face of the hospice team. So the nurse will visit, evaluate how somebody is feeling in terms of pain or nausea, shortness of breath or other sources of suffering. The nurse will talk with the patient and family about the other dimensions of what they’re going through emotionally and spiritually.
A physician oversees the whole plan of care and makes sure that the right medications are being prescribed and that dosing changes are being made when somebody needs more than we're giving them currently. The whole team talks about ways that they can meet the individual needs and goals of patients and families as they go through this process. Hospice is very much an iterative process and a team effort, so where we start in terms of pain control or supporting the patient, that very much evolves as somebody gets sicker.
How long does hospice care last?
Hospice is technically if you have a life expectancy of six months or less, but in the U.S., hospice stays are on average about three weeks. And I think that’s unfortunate, because it speaks to the fact that we have a really hard time talking about these topics — like suffering, quality of life, whether certain treatments are really adding to or taking away from someone’s life experience. And because those conversations can be delayed, we have a situation where people are referred very late to hospice. So that statistic has always been pretty fascinating to me, and not surprising.
What is important for people to know about hospice care?
Hospice is not about giving up, or throwing in the towel, or losing the fight, or any of that. Hospice is about acknowledging where your body is at, at a given stage of illness, and honoring that and honoring the person that you are, which is distinct from the illness that you’re suffering.
I think it’s really important for people to know that hospice is a very comprehensive, humanistic plan of care and service that really attempts to maximize dignity and minimize suffering when you’re living with an illness that we can't cure. And most illnesses cannot be cured, so thinking about when you would want to make a transition from treatments intended to prolong life, to treatments that are intended to improve the quality of your life, is a conversation I always encourage people to start thinking about at the time that they're given a serious diagnosis.
I think it’s really important for people to know that hospice care is very much centered on the needs of the patient and their family, and on supporting what’s most important to them and what they value and what their goals are for their time on Earth.