Former President Jimmy and First Lady Rosalyn Carter courageously allowed us to see their frailty and openly shared their journey near the end of life, including decisions for hospice so they could spend as much time as possible together.
Former First Lady Rosalynn Carter died on November 19, 2023, two days after the Carter Center announced she would be entering hospice with a diagnosis of end stage dementia. The Carters show that hospice support can last a couple of days, or in the case of Mr. Carter, 11 months and still counting. This week we explore the lessons we can learn from the Carter family regarding aging, illness, and loving.
In this Episode:
- 02:16 – Recipe: Rosalyn Carter’s Cheese Ring
- 02:38 – Rosalyn Carter’s Advocacy for Caregivers
- 06:51 – Jimmy Carter’s Hospice Decision
- 08:59 – How Some Patients Live Longer on Hospice
- 11:09 – The Realities of Hospice…is Home the Best Place to Die for Everyone?
- 18:07 – How the Carters Modeled How to Die
- 24:59 – Outro
Jimmy Carter’s Decision for Hospice
In February 2023, the longest-living former president in American history at age 99 – announced his decision to cease curative treatment and receive hospice care. When Mr. Carter entered hospice care, he said he would no longer go to the hospital for any treatment because he said the trips away were too hard on Rosalynn. He wanted them to be together.
Mr. Carter’s decision and attitude about end of life has sparked a lot of discussion about hospice and has helped break down misconceptions. He has showed us it isn’t only for people who have just a few days to live, nor does it mean giving up care entirely. Rather, it can be a choice to support living their very best life to the end.
We know that Jimmy and Rosalynn spent most of their time together, often sitting in their living room holding hands. Hospice care is designed to support exactly these types of activities and experiences. Hospice care teams work with patients to understand their goals and provide care that enables them to meet those goals to the best of their abilities.
We also discuss some of the realities of hospice in the home and the challenges for caregivers now shouldering the day-to-day care.
FAQ About Hospice
The Carter’s willingness to share their hospice journey has opened the conversation and provided opportunities to clear misconceptions about what hospice is. Below are some of the most commonly asked questions.
- Is hospice care only for those who have given up on life? No, hospice care is as much about how you want to live as it is about how you want to die.
- Is hospice only for terminal cancer patients? No, any disease that can result in death is eligible for hospice care. For example, heart disease, Alzheimer’s disease, ALS, etc.
- Is hospice a place? Hospice is rarely an actual location that people go to. Care is almost always provided where a person lives, typically their own home or a nursing home. There are small free standing hospice houses in some communities.
- Once you are in hospice care, do you have to stay until you die? People can leave the hospice whenever they want and there’s always the option to be readmitted.
- It is always up to the doctor to bring up hospice care to the patient? No, you can ask your doctor about hospice care or how to start that process. If you are asking the question, then it is likely time to start hospice care. Start the conversation with your doctor or contact a local hospice provider.
- Is hospice care only for older adults? Although most people cared for by hospice providers in the U.S. are over the age of 65, the care is available for anyone with a life-limiting condition who meets eligibility.
Celebrating Rosalyn Carter
Former First Lady Rosalynn Carter was known as a humanitarian, mental health advocate, and devoted partner to her husband, former President Jimmy Carter.
There are only four types of people: those who have been caregivers, those who are now caregivers, those who will be caregivers and those who will need caregiving themselves.
– Rosalyn Carter, Founder of the Rosalyn Carter Institute for Caregivers
The Rosalynn Carter Institute for Caregivers, which she founded in 1987, supports family members and others who take care of those unable to function alone. She called caregivers the backbone of the nation’s community health care system and said they too often went unrecognized for the vital work they do.
Whether helping an aging parent, a seriously ill spouse or child or some other special person in need, those giving care often do so at a great personal sacrifice of time, energy and income.
Rosalyn Carter
The Carters were caregivers to each other at the end of their lives, sitting together on their couch and holding hands, so neither of them feels loss.
At 96, Mrs. Carter had an infection that had not improved with antibiotics. The day before, she had entered hospice in her home, and the goals of care changed from trying to prolong life to making her last days more comfortable. Jimmy was with with Rosalyn right to the end as he sat beside her bed in his wheelchair and had a bed feet-to-feet with hers.
We celebrate the wonderful, caring life that Rosalyn lived and the lasting impact she has had and will continue to have.
Thank you Rosalyn and Jimmy for your wonderful service!
Recipe of the Week: “The Plains” Special Cheese Ring
In honor of Rosalyn Carter, we’re featuring her favorite cheese ring with the perfect blend of sharp cheese, saltiness, and contrasting sweetness from preserves in the middle (she like strawberry). Head over to Southern Living for the recipe!
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Related Podcasts:
- S2E29: How do you decide if it is time for hospice care?
- S1E30: The Expectations of Hospice Care
- S1E18: Hospice and End of Life with Mary Kazanowski
References:
- With Rosalynn’s passing, Jimmy Carter faces life alone – The Washington Post
- What is hospice care? 6 myths about this end-of-life option
- Where Americans Die — Is There Really “No Place Like Home”? – New England Journal of Medicine
- Comparing Hospice and Nonhospice Patient Survival Among Patients Who Die Within a Three-Year Window – Journal of Pain and Symptom Management (jpsmjournal.com)
- Predictors of Hospice Enrollment for Patients With Advanced Heart Failure and Effects on Health Care Use | JACC: Heart Failure
- President Carter’s many months on hospice highlight a surprising truth – Colorado Newsline
- Jimmy Carter turns 99, defying expectations after seven months in hospice – The Washington Post
- NHPCO Updater: The Carters Are Showing Us What Hospice Means
- Rosalynn Carter’s final moments were spent with Jimmy – The Washington Post
- eCFR :: 42 CFR 418.78 — Conditions of participation—Volunteers
- Acquisitions of Hospice Agencies by Private Equity Firms and Publicly Traded Corporations | End of Life, Hospice, Palliative Care | JAMA Internal Medicine | JAMA Network
Resources:
- Rosalyn Carter Institute for Caregivers
- The Carter Center Celebrates 40 Years with 40 Key Moments – The Carter Center
- The Complete Guide to Understanding Hospice Care (amedisys.com)
- 8 Signs It May Be Time for Hospice Care | Hospice Resources (compassus.com)8-5x11_booklet_Hospice_Cagle_Sept1.pdf (hospicefoundation.org)
https://blog.feedspot.com/palliative_care_podcasts/
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