Ep.3: What’s the Role of an End-of-Life Doula — And How Can They Support the Dying Process?

Melissa Mendez (00:10):

Welcome to vision, the home care leaders podcast. I’m Melissa Mendes with home care pulse. Today, we have a very special guest with us. Barbara Carnes. Barbara is an award-winning end of life educator and true pioneer of the hospice industry. She’s the author of gone from my site, the little blue book and the 11th hour. She has sold over 30 million copies. And she’s here today to talk about the role of an end of life doula. So Barbara, welcome to the show.

Barbara Karnes (00:41):

Oh, well, nice to be here. Thank you for inviting me.

Melissa Mendez (00:45):

Yes. Thank you. I’m honored to have you join us today. As we dive into the valuable role that an end of life doula or caregiver plays in the dying process, you have had a tremendous amount of experience over the last 40 years and your passion into providing education care and support of dying people and their loved ones is really inspiring. Tell us a little bit about the turning point in your career, where you saw the need for better hospice and end of life training.

Barbara Karnes (01:16):

Well, you know, it was interesting. I went into nursing school right out of high school and when I finished my nursing school, I thought, oh my God, I’ve made a huge mistake. Should have never been a nurse. Actually I should have been a social worker. So I never worked in a, in a medical system other than graduating from nursing school. I got married, raised a family. It wasn’t until the seventies when Elisabeth Kubler-Ross, Dr. Elizabeth Kubler-Ross in Chicago came forward and said, Americans are not treating their dying well at all. They’re putting them at the end of the hall in a hospital and leaving them alone. And at that same time that she was pointing out our failings Dame, Cicely Saunders in England developed what she called the hospice philosophy. And her belief was that you take care of people who are dying differently.

Barbara Karnes (02:34):

That it’s about quality of living until you’re not versus treatment even when it’s not appropriate. So those two things sparked my interest and I thought, oh, this is something I can do. This is something I want to do. And so in hindsight, I look back now after what 40 some years of working in end of life. And the fact that I had no medical experience was my gift was that I could see how dying occurs, not from a medical preconceived idea. I was fresh in, oh my goodness, this is what’s happening. And let’s be creative in what we do about it. So that’s how I got here.

Melissa Mendez (03:38):

I love it. I love the, the looking outside the box for it. It’s, it’s really a unique perspective as we dive into our topic today. I think it’d be great to start with a simple question. That’s a very first step in creating a sacred memory for a loved one’s dying experience. So what is an end of life doula?

Barbara Karnes (04:04):

An end of life, doula is a person trained in the dying process and what to do while it’s occurring. Dying is not a medical event. We tend to think it is because we associate it with diseased and medicine and hospitals, but dying is not a physical event. It is not a medical event. It’s an emotional, communal social event. You don’t have to have a medical degree to support and guide a person who’s dying and, or their family, what you need isn’t is knowledge in the dying process and taking care of someone at end of life is different than taking care of someone who’s going to get better. But most people don’t know that an end of life doula knows how to take care of people at end of life.

Melissa Mendez (05:23):

Love that knows how to, how to provide that emotional support, because we, you know, there’s medical teams, right? Your, your hospice team is there to provide the medical guidance, but the, the doula is there. The end of life, doula is there to, to guide the emotional as well.

Barbara Karnes (05:40):

Well, now I have to qualify and say that hospice services provide not just the physical care and pain management and symptom control. They have social workers for emotional, psychological support. They have chaplains for spiritual support and guidance. What hospice doesn’t have that end of life do list have is time, time, hospices have schedules and huge patient loads and Medicare regulations that they have to live up to and of life doula have the time to guide support and stay with a family. Now they’re not shift workers, but they can be there a lot longer than the hospice can. What, in an ideal world, the hospice workers and the end of life doulas would work together, hand in hand and maybe down the road, they can work that out. But right now the end of life doulas are kind of outside of the medical model and hospice is part of the medical model.

Melissa Mendez (07:18):

Gotcha. Okay. Yeah, it makes I love, I love that breakdown to it. That’s perfect. You were recently honored by the international doula life movement with a certificate of recognition for your contributions in end of life education with a rise in the elderly population, we’ll begin to see a demand for end of life doulas. For those who operate in the agency, why should they consider providing end of life doula training for qualified individuals?

Barbara Karnes (07:53):

When you say agencies, are you referring to hospice agencies, hospitals? What

Melissa Mendez (08:04):

Let’s we can maybe both right start at hospice agencies and then maybe kind of how that partnership with a hospital is important, too.

Barbara Karnes (08:14):

It, it would be so great. The, the, the roadblock is here is a group of people that have in depth end of life, knowledge that not only does the public and the community not have, but actually a lot of the medical professionals don’t have. So here is this group, this end of life doula that have studied and have created a knowledge base on the dying process and how to support and guide in all those aspects. But right now there isn’t really a payment source that’s going to support them. And that to me is a, a huge gap because here’s this opportunity to support and guide a patient and a family, to an extent that hospice can’t do, because hospice can’t provide the time that end of life doula can provide, and both are educated at end of life. The gift that end of life doulas bring is the time that they can spend how we can as a society, figure out how they can pay their grocer so that they can continue doing the work is the challenge.

Melissa Mendez (10:12):

Yeah. Yeah. That’s definitely a hurdle to get across. I can, I can understand that there are a lot of aspects of life that are unknown. But one that is guaranteed is that death comes for all of us. For some it’s fast others it’s gradual. Some it happens young and for others, you know, old in, and, but eventually our time here will come to an end. And that dying experience is a very unique experience. Unique to the dying patient, unique to the families. How does an end of life doula advocate for the dying patient and ensure that the experience is, is sacred

Barbara Karnes (10:56):

In all end of life work? Our goal is the patient’s death is to be there to support during the time from diagnosis of, I can’t fix you until death comes and the support for the family during that pre-death time and also following the death. So it all comes to the moment of death, and yet most families are alone when their loved one dies at home, and everyone wants to die at home. You know, you want your dog on cat on the bed and your family close. Nobody wants to be in the hospital or a nursing facility. And yet the care that is involved, our medical reimbursement system does not address the needs of caring for someone who’s dying at home. And it’s hard work and family caregivers the responsibility falls on them because our medical reimbursement system does not provide for in-home care on a continued basis.

Barbara Karnes (12:31):

Very much, you know, I’m not making a blanket statement, some have coverage, but most people don’t. And so that responsibility falls on the caregiver who not only is emotionally involved with this person, who’s been told, put your affairs in order, I can’t fix you and go home. And knowing that my husband, father, mother, whoever is going to die in my home and I’m responsible. That was, oh, that’s so huge. Because as much as we want to help, we don’t know what to do. People don’t die like they do in the movies where someone says something profound and then they’re dead. You know, it’s hard work for the person that’s dying and for the caregiver. And so we want to support both and end of life doulas that’s their mission is to support and guide during, from diagnosis. I can’t fix you through the death and support in the bereavement process.

Melissa Mendez (13:59):

I love that it, it actually leads and answers a little bit of our next question. But we talked earlier about the, the weight that is on a caregiver for caring for someone in the dying process. And, and it’s a lot. And if you don’t know how to navigate that it can be extra heavy, especially after the individual passes away. So, you know, the, the role, like you said, of a doula end of life, doula does not just stop. Once the patient has died, they work with the families to provide comfort, to provide reassurance. And how has this level of care beyond the death of the patient really changed the way we process death?

Barbara Karnes (14:42):

Oh, well, I don’t think we can really comprehend before death. The enormous weight that grief will put on us from the moment of diagnosis. We begin grieving that, you know, tech, technically the word is anticipatory grief. I know it’s going to happen. And so even on unconsciously, I’m grieving now. And yes, that goes on. And, but the weight of the grief that we will carry after the death, some of those emotions are going to be related to the relationship we had in life with the person, the guilt, the arguments, there’s no perfect relationship. You know, life is a series of ups and downs and great times and challenging times, and all of those memories are going to affect our grieving. And that’s why support afterwards. You know, grief is a whole bunch of emotions, all rolled up into one package. It’s anger, depression, sadness, it’s physical, physical pain is grief a whole, you know, it’s so complex that for bereavement follow up, following the death will help a family understand that what they’re experiencing is normal. You know, there isn’t, you know, something wrong with you. It isn’t pathological what you’re thinking and feeling in your grief. This is what normal grief is like. And so we need that guidance and support following the death. Just like we need it before the death.

Melissa Mendez (16:58):

Yeah. And, and for some time it feels like you know, there’s no set timeframe on grief. You find it sneak up in, in the smallest memories in the smallest ways. So I love that there are people out there in roles like this that are available to help along the whole timeline of it. It’s not just one section it’s it’s from the time of, like you said, I can’t fix you to beyond, you know, there’s someone there that can be an ear to listen, you know, to lean on kind of thing. So that’s great. Thank you.

Barbara Karnes (17:38):

Well, you know, there’s no magic 365th day after the death that, okay, now I’m back to my normal life. You will never return to your normal. And I put that in quotes life. Following the death of someone import a significant person in your life, you will learn how to go on living without them. And the only thing that grief has going for it is time. And because time fills in the space between the pain of grief and following the death at first, you know, it’s every second that we feel the pain of grief, but gradually ever so slowly, we don’t think about the person 24 7, you know, something special will spark the memory and will feel the pain. But that’s just knowing, being able to call someone and say, Ugh, today’s a bad day. I’m really missing her, you know to talk. And that’s where the end of life doula and hospice cuz they offer bereavement also support is really invaluable is that person you can share who understands.

Melissa Mendez (19:22):

Yes. And it is especially, you know, if, if that individual was there with you at the time, you know, they, they know what you’re feeling and they can help you navigate that. That’s so valuable. Yeah. I, I love that there are people out there for that. It, it definitely takes a special type of individual, you know, to be an end of life doula, be a caregiver that would see the end of life over and over again. But we need them so very much. It’s so very important. So thank you. I know that as we close out our conversation today, I wanna thank you Barbara for your soft and kind conversation about death and all the elements involved. So much of us are shielded from death. But it’s great to know that when the time comes, there’s a level of care out there that makes this journey one, you don’t have to walk alone. So thank you again, Barbara, for joining me today, I’ve really enjoyed getting to know you more and sharing your passion with our listeners and thanks everyone else as well for tuning in and join us next Tuesday for another great conversation.