Death Doulas Provide End-Of-Life Care
HOST INTRO: For the last hundred years in the US, people have mostly ended their lives in hospitals. More people want to die at home, but live far from their family. Now, people are being trained as death doulas to help ease strangers through death. The word “doula” is often linked to those who help new mothers. But, as Lindsey Kortyka reports, instead of assisting at the beginning of life, a death doula helps someone end their own.
KORTYKA1: A group of seven women are seated in an unusual classroom – a rented beauty salon on the Upper East Side. *AMBI* Chatting It is Sunday afternoon and the women are here to learn how to be a death doula.
O’BRIEN: So my name is Suzanne O’Brien and thank you so much for coming here
NARRATION: Suzanne O’Brien is passing out training manuals. She has an eight hour day planned for the doula hopefuls.
O’BRIEN: What we do, where we start out is, If we can, just to start out, can you just say your name, where you are from and also what brought you here. (0:05) (FADE
KORTYKA2: As they go around the room, nearly every woman has a pretty similar version of a story – of feeling helpless while watching someone they loved die.
SARNA: I didn’t know this was her last week of life and they discharge her from the hospital with a prescription and no meds.
KORTYKA3: Sareen Sarna has come from New Hampshire for the training. She works in a hospice, but on the business side. She’s here because she regrets how much her mother suffered in the week before her death,
SARNA: That could have gone so differently. (:5) [ do you have tape of her saying, she didn’t need to go through that? Or I just wish I could have done more?] and I had all these willing people educating me on the spot as I was also living my life….
KORTYKA4: After the introductions, O’Brien starts to talk about how, as a death doula, you will try to get a sense of what the person who is dying wants the most.
O’BRIEN: A lot of times I’ll walk into a new case and the way I sort of let that be known
is if I’m talking with a patient I’m like if you want ice cream sundaes three times a day,
you can have that. This is your journey. (0:13)
KORTYKA5: The program launched in 2012 in response to the number of individuals with life threatening illnesses facing the end of life alone, without significant support from family or friends. It provides volunteers who visit someone weekly – and sometimes more frequently – until they die. These relationships can last months, or even years. Death doulas do not receive medical training – and there is no official certification. The bulk of their work is providing companionship and care. So the training today, in some ways, is teaching people how to be observant – and flexible……whether it is allowing someone to eat three sundaes a day or whether someone is starting to die – like when they stop eating or drinking.
O’BRIEN: Your body, your energetic body, literally shuts down like a system – like a
computer. It looks the same whether we are in a penthouse apartment on fifth
avenue or a dirt floor in Zimbabwe. (0:20)
KORTYKA6: O’Brien says the role a death doula plays is to try to ease the patient’s fears, to help the family dim the lights and, often to help set a mood by playing a favorite request.
O’BRIEN: My patient the other day kept talking about the BeeGees 79 live album.
AMBI: BEEGEES- TOO MUCH HEAVEN PLAY (0:08) – you will really need to play the
O’Brien: I mean the music is so powerful to people (0:08)
KORTYKA7: There are death doula trainings taking place around the country…and they are in high demand. O’Brien says she recently turned away several requests for doulas even though they have more than 100 doulas in her organization. O’Brien says some doulas can request payment or volunteer their time. Doulas want to help the person they’re caring for and the family to accept death.
O’BRIEN: And people again that I’ve had live full lives, it’s so
difficult because the family will be like – what do you mean they’re dying? It’s their time!
Do you have any sound from the training that could be useful in the transition?
O’BRIEN: With that can we take some photos at the end here *clapping* thank you so
KORTYKA8: As more baby boomers get older and face their own mortality, the way people want to die is changing. Katy Butler is a science journalist who wrote “Knocking on Heaven’s Door: A path to a better way of death” – about helping both of her parents die. In it she cites a study that says more than a fifth of hospital patients die in intensive care. Having a doula on hand might help someone who is dying get more of what they need.
BUTLER: which is caring and with understanding the meaning of what they are
going through or even good pain control. It’s just not surprising to me that
these new professions are springing up. (0:20)
KORTYKA9: Still, dying is not one size fits all. And, when it comes to people who say they don’t want death doulas- Butler gets it.
BUTLER: Not everybody wants a hired stranger with them when they are
Dying, However well trained that person might be.
AMBI: Nursing Home noise
KORTYKA9: It’s a sunny Tuesday afternoon and Sareen Sarna – one of the women who was in Suzanne O’Brien’s death doula training in NYC – is at the Lighthouse Nursing Care Center in Revere, Massachusetts. She’s meeting Mary, an 86 year old woman who’s going to be her first patient. Mary’s about to eat lunch but Sareen has smuggled in some snacks.
SARNA: I brought you fresh cut strawberries, pineapple, a mounds bar. Contraband!
AMBI: silverware clinking
KORTYKA11: Mary’s a remarkable first client. Since she was in her 30s, she’s been thinking about how to help other people die. She and a friend even started a program in the 50s in Boston that could have been called a death doula program. Now her time has come. She thinks she will likely die within the week.
MARY: I know it’s coming but I haven’t experience it yet.
SARNA: yeah, *laughs*
MARY: You never die twice, you know.
SARNA: You are so funny
KORTYKA12: To help Mary prepare, Sareen asks her all kinds of questions about what she wants. She’s using the techniques she learned in the doula class.
SARNA: Do you have a faith at all? Is there anything there for you?
MARY: Not much
MARY: Even when I was a kid, even when I was in high school I was kind of the odd
one. That didn’t sit well with the nuns *laughs*
SARNA: Oh, Catholic School?
KORTYKA13: Mary says after she dies, she’d like to be cremated and her ashes scattered into the ocean. She says she loves the beach. She also says, she doesn’t understand why people have a negative view of death. She wants to laugh til the very end.
MARY: You’ve gotta laugh at things, thank God. I feel sorry for people who can’t laugh
at things. No matter how bad it gets there’s always a little bit of humor somewhere.
SARNA: Sure, sure. (:15)
KORTYKA13: Mary’s children are coming on Sunday – Mother’s day – to help her go through her financial papers. Her daughter Chris has offered to take charge.
SARNA: Doesn’t that sound like a fun mother’s day for her to do?
MARY: well she’s going to do it for her mother, and who is more important on mother’s
Day than mothers. (0:10)
Though Mary’s children couldn’t be there for this doula visit, Sareen brought a video message from Mary’s son, John:
JOHN PHONE VIDEO: (FADE DOWN AFTER 0:03) Hey Mom, it’s me, John. Sareen
came down to see you but I’m stuck at work. I’ll come see you later this week and
definitely we’ll see you on Sunday,
Mother’s Day, too! Love you lots! Kisses! (:15)
KORTYKA14: John says hello and Mary smiles at the sound of her son’s voice. But, she says she hired Sareen because even though she’s close with her adult children, it’s hard to talk to them about her death.
MARY: You can’t talk to a lot of people about that. Jesus, They don’t want to visit me and
hear me talk about death.
KORTYKA15: They discuss Mary’s favorite music, something that they might play at her funeral, or at a future doula visit.
SARNA: I know you like Frank Sinatra.
MARY: I’ve got every album he’s ever had.
SINATRA THAT’S LIFE PLAYS (:08)
KORTYKA16: As the meeting wraps up, the two say goodbye. Sareen leaves the remaining strawberries, and other food she brought. Mary had added them to the nursing home ice cream. Sareen plans to return on Thursday for a visit, and then again on Sunday with with Mary’s children.
SARNA: Mary, I’m going to leave the pineapple and the strawberry and the candy bar
right here ok? And Here’s your phone. Ok?
MARY: Thanks, love.
SARNA: All right, we’ll see you later.
Sareen leaves hoping she provided some comfort to Mary in her final days.
Lindsey Kortyka, Columbia Radio News.