NPR’s A Martinez talks to Ben Marcantonio of the National Hospice and Palliative Care Organization, about in hospice care, how the focus is not about preparing for death, but for living a full life.
A MARTÍNEZ, HOST:
What does it mean to offer compassionate care for people facing the end of life? And how can someone face the final moments in peace, comfort and grace? Well, many people have asked questions just like that since former President Jimmy Carter opted for hospice care more than six months ago. Ben Marcantonio is interim CEO at the National Hospice and Palliative Care Organization.
BEN MARCANTONIO: His son recently in an interview shared glimpses into the way in which President Carter and First Lady Rosalynn Carter have been sharing moments together, opportunities to be with and pray with family and friends, to enjoy his favorite ice cream, peanut butter, and that he’s been able to live and not be returning to hospital visits or to be going to all kinds of medical appointments outside of his home to seek cure, but rather to really focus on his quality of life and how he wants to spend that time until his death.
MARTÍNEZ: In an American culture that often shuns even the thought of death and dying, Marcantonio says hospice is also about living.
MARCANTONIO: Choosing hospice is not necessarily an end to life or giving up on hope. It’s just redefining hope and helping navigate a stage of life that is unfamiliar to us because we’ve never walked that course.
MARTÍNEZ: Providers say that’s about bringing respect and dignity to final moments. For example, Keisha Mason – she’s the executive director of Heart’n Soul Hospice in Nashville. It’s a Black-owned hospice dedicated to caring for people in underserved communities.
KEISHA MASON: We have a patient on service right now who has dreads almost to his knees, probably about the longest dreadlocks I’ve seen. So, like, once a month I go over, I wash his hair, and I retwist his hair. And his mother almost cries every time that I go do that for him. And she’s like, why do you do this? My kids have dreads, and I know what that is. It takes some work to get it done, but it’s what I need to do for him to give him back his quality of life.
MARTÍNEZ: It’s also about bringing what Mason says is her authentic self to extraordinarily challenging work.
MASON: Most of us who are in the hospice will tell you that we didn’t choose to go into hospice care. Hospice plucked us out from where we were and said, no, this is where you need to be.
MARTÍNEZ: Michelle Green is from Lufkin, Texas. That is where her mother, Barbara Carroll (ph), is in hospice care.
MICHELLE GREEN: This experience is honestly just full of blessings and heartache. I live in the same town as my mother. She is 89. And it is such an emotional and physical drainage to just watch a loved one declining. So for us, being able to turn to that caring professional – it’s such a relief just to know that we’re not alone.
MARTÍNEZ: That first day – what was that first day like?
GREEN: It was very emotional. You know, it’s tears of joy. It’s tears of sadness. We just had to trust and know that it was the right thing to do.
MARTÍNEZ: The hospice they turned to is Hospice in the Pines, where Demetress Harrell is the CEO.
DEMETRESS HARRELL: I think one of the biggest concerns that I hear from most families is how long will they have on hospice? And so giving them the comfort in knowing that in no way, form or fashion will this decision hamper or hasten their life expectancy gives them great comfort in knowing that the compassionate care will be to do everything we can to enhance the quality of life.
MARTÍNEZ: How often do you sense or hear guilt from a family?
HARRELL: So the guilt comes from did I do it soon enough, or did I do it too soon? I have cards even in front of me now that indicate it was the best decision we could have made to ensure that mother or father or sister or brother or even child received comfort and that the presence of you all being there, making decisions that I could not and handling the heavy lifting made a significant difference. And you all are angels in our lives, and you will be forever. And so I hear most of the time I wish we would have done it sooner.
MARTÍNEZ: Demetress, when we hear that someone enters hospice, it tends to be followed by a sense of sadness. Like, that’s it. OK. This is the end of their life. And you made it a point to say that this isn’t just necessarily about someone’s end of life, but it’s about their life and living.
HARRELL: When we get a terminal diagnosis, it is hard for us to wrap our hands around it. When we come on hospice, we realize that it’s considered a good death because the person is not laying there suffering. And so you can only imagine what life would look like and death would look like without hospice holding your hand.
MARTÍNEZ: Michelle, what’s your mother Barbara’s experience been like? When you’ve talked to her, what has she said about it?
GREEN: You know, it’s just finally giving them the help and letting them realize they don’t have to do it alone. Mom looks forward. Whether it is her nurse that is coming or a CNA that’s coming, she looks forward to those visits and is honestly developing a friendship with the individuals.
MARTÍNEZ: So, Michelle, what would you say to people listening that are thinking about this decision, either family or the person that might be going into hospice care? What would you say to them about this whole experience?
GREEN: I would encourage them to take that plunge, to take the guilt out of their decision and realize that they are doing what is best for their loved one. They are providing them with professional and caring care. And like Demetress said, let the daughters be a daughter. Let the sons be a son. Let the family enjoy being with their parent or whoever needs care and turn that professional care over to people who are trained in caring and let you be the loving family or friend to just support them.
MARTÍNEZ: Michelle Green is in Lufkin, Texas. Her mother, Barbara, is in hospice care. And Demetress Harrell – she’s CEO of Hospice in the Pines in Lufkin. Michelle and Demetress, thank you very much.
GREEN: Thank you so much.
HARRELL: Thank you so much. It’s been an honor.
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