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 surpassed a a myriad of health obstacles over the last decade, including brain cancer, liver surgery and hip replacement surgery. Now the longest-serving president chooses to spend his last days at his home in Plains, Ga.
“After a series of short hospital stays, former US President Jimmy Carter decided today to spend his remaining time at home with his family and receive hospice care instead of further medical intervention,” read a statement. “He has the full support of his family and medical team. The Carter family asks for privacy at this time and is grateful for the concern shown by his many fans.”
Although hospice care is not uncommon in the United States – with 1.6 million patients who received it in 2018according 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 “This Good Night: Life and Medicine at 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 answers have been edited for length and clarity.
Yahoo News: What is hospice care?
Dr. Sunita Puri: I like to think of it as intensive care focused on comfort. It is provided with the goal of minimizing the physical, emotional and spiritual suffering that patients and their families experience when someone has six months or less to live. Hospice can be provided in the home, which is where most hospice care takes place, but it can also be provided in a facility such as a nursing facility and sometimes a hospice facility. autonomous
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 takes into consideration the totality of his experience with serious diseases and the suffering associated with it.
How a patient (or his family) and doctors decide to start hospice care?
It is usually a conversation between doctors and their patients and family based on a couple of things. One, when we get to the point where the options to treat the primary disease are not working or there are no more options 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 is also very possible that at any point in their illness, a patient could 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 until when I had. to live.” So there is a sort of discussion of prognosis or life expectancy, which is part of it, but the other intertwined elements are about suffering, quality of life and how someone wants to spend their time.
Who provides hospice care?
Hospice care is provided by agencies, usually. For example, I work in a system where we do not have our own hospice agency, so it is very common for someone who is your primary medical team to refer to another organization that provides hospice. There are doctors, nurses, spiritual assistants and social workers involved, and sometimes there may be music therapists or physical therapists or occupational therapists, depending on the agency and the needs of the patient.
What happens during hospice care?
When you start receiving hospice services, there is a team that will visit your home, and usually the nurse is the face of the hospice team. Then the nurse will visit, assess how someone is feeling in terms of pain or nausea, shortness of breath or other sources of suffering. The nurse will talk with the patient and the family about the other dimensions of what they are going through emotionally and spiritually.
A doctor oversees the entire care plan and ensures that the right medications are prescribed and that dosage changes are made when someone needs more than what we are currently giving them. The entire team talks about ways 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 patient support, that evolves a lot as someone gets sick.
How long does hospice care last?
Hospice is technically if you have a life expectancy of six months or less, but in the United States, hospice stays are on average about three weeks. And I think it’s unfortunate, because it speaks to the fact that we have a really difficult time talking about these topics – like suffering, quality of life, if certain treatments are really adding or taking away from someone’s life experience . And because these conversations can be delayed, we have a situation where people are referred very late to the hospice. So this statistic has always been quite 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 anything like that. The hospice is to recognize where your body is, in a certain stage of the disease, and honor that and honor the person you are, which is distinct from the disease that suffers.
I think it’s really important for people to know that hospice is a very comprehensive and humanistic plan of care and service that really tries to maximize dignity and minimize suffering when you’re living with an illness that we can’t cure. And most diseases cannot be cured, so thinking about when you want to make a transition from treatments aimed at extending life, to treatments that are aimed at improving the quality of your life, is a conversation that we always encourage people to start thinking about the time they are 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 to support what is most important to them and what they value and what their goals are for their time on Earth.