The Power of Presence: How End-of-Life Doulas Support Families with Karon Keller McGovern

0:01 Thank you for joining this episode of Ask Dr. Mia. I am excited to talk to you all today with Karen McGovern. She is a certified end of life doula and has had personal experience caring for multiple family members. And I'm excited for our conversation today to really talk about what she has experienced both personally and professionally. navigating through the end of life journey. So welcome to the podcast, Karen. Thank you, Dr. Mia. It's a pleasure to be here. Thank you for joining. And just to start out with, I was hoping you can share with the listeners a little bit about who you have cared for and what that experience has been like, as well as who your family members are as people.

0:55 Okay, thank you. um I have cared for uh several online virtual, so I can do virtual work as well as in person. um I do like being in person so that I can be there with the person. m But that is a challenging piece because you're trying to work with what the family's telling you because usually the patient or the client cannot. so... It took me a couple times to be able to get into that smoothly, but it is good to know in the end that everybody is pleased with having someone there that can, you know, kind of calm things down and talk things down when they get crazy.

1:39 As far as so sorry. think I meant like the how who you have cared for personally, not professionally. Personally, I have helped with my uh father. He had cancer for two years and um he was about three to five years old when he passed and I was 13. My baby brother was five. uh And that was, uh it was challenging in so many ways because my mother at that point had an eighth grade education. She was learning to, you know, balance a checkbook, write a check, drive, and how do you raise six kids all of a sudden by yourself and you're 28 years old?

2:22 um But we did it. um And mom and I took care of dad the best we could. And then um with the cancer getting worse, then he eventually went to the VA hospital. But watching what they go through is very tough. Even though I was there, I don't think I really grasped all of it until I got older because he wasn't able to always walk well or dress himself and things of that nature. So that was my first, I guess, really challenging experience.

3:02 Others had died but hitting home when it's your parent. Oh yeah, I'd have been 11 when he first got sick. And then from there, there were family members. My father died in 1969. My great aunt or yeah, my great aunt died in the same year from breast cancer. My grandfather died in 1972 with emphysema and it just kind of kept rolling. So my family, we all have come to accept cancer is the biggest issue we have to deal with and it's not environmental.

3:43 I'm sorry, it's not family, it's environmental. um So where we grew up, there was a refinery and an electric plant. Across the river was a nuclear plant. And then all of the herbicides, pesticides, everything we put in the ground that we didn't even know could cause issues. So uh a big majority of my family has died of cancer or had breast cancer or various other cancers. um My mom has had it. I've gone through that with her. and um I've gone through with my stepdad and I will call him dad going forward. um He had Alzheimer's and so that was a totally different experience to go through and I will say right now the one thing is I was a firefighter and a first responder and one of the first things you learn is that if it's a family member you must step back.

4:40 And if you do not, you can be put on suspension. Because when you're working in these positions, it's absolutely difficult to remove yourself emotionally. You try to do what you know is right by all of the rules and laws, but it's so hard for that flip of, they're mine. Yeah, yeah, and that's kind of how I felt personally too. It's different. My mom died from ovarian cancer and, uh you know, being the daughter is definitely different from being the doctor. ah Professionally, I think I've given plenty of hard news to people, but it's a totally different experience when it's your own parent or your own family.

5:25 And I think that we had that similar experience of when it's your own family, particularly for someone with dementia, it hits differently, uh more on an emotional level in addition to an intellectual level. But I think that advice from firefighting academy or first responder training is really useful to keep in mind that even if you are professionally doing this work as a caregiver, it's still different and you still need help. um Even if you know all the things to do, it's still different when it's your own family. Yeah.

6:07 And how was it in terms of your dad, your mom's second husband in terms of his dementia? I think we noticed it early on, but I did verify things with mom. So um it really became uh serious in 2016 and um mom had to have open heart surgery. So we had to put him in a facility because there wasn't anybody else to help take care of him as brothers and sisters were all across the United States. So that doesn't help a lot. But, um and when she got out, you know, it had advanced and um in two years he was gone.

6:52 But dealing with it, I think that one of the more difficult things for me, and again, because you're talking family, was watching, that wasn't necessarily always the easiest person to talk with, but now there was this violent, I call it, side to him. um And... You're trying to grasp that. How did this appear? What made this come out? um And there was a point where he pushed furniture up against the door to keep people out. He broke family pictures because he didn't know who they were and why they were in his room.

7:33 Trying to feed him and dress for him and care for him was very challenging. There were a lot of issues at the nursing home over that. um And then, My mom called me and I went back to Illinois when things really started, you know, seemed to be going down quickly. And they allowed an eight month uh pregnant, they allowed a nurse who was eight months pregnant to take on my dad that day. And dad got violent and he knocked her down and hurt her. And so they automatically transferred him an hour away to a lockdown facility. They call them behavioral lockdowns for them.

8:14 And in a week, he just started deteriorating. They brought him into the hospital after a hospital close to that location. And they did a series of tests that they should not have ever done. There was no reason for him in my opinion. I'm not a doctor, but it's my opinion. um And within two weeks, it was pretty much over because The doctor had told us that they could get the blood pressure kind of, or the blood sugar to balance, but he was going to come back every two weeks. It would not stay balanced. They weren't able to do that. And um it was at that.

8:56 diabetes as well. Okay, that that was the sugar related to that. But yeah, yeah, he was not the same after that transfer to that uh lockdown facility and being sick. And I'm so sorry that happened. It sounded like your family did not get a choice as to whether he he had to be transferred. They just transferred him. They didn't even call us, Dr. Mia. They moved him an hour, a little over an hour away, and then called my mom and I. And we were shocked. And of course, like anybody, all you can do is react at that point as, okay, we've got to get everything together, all the paperwork and drive and get there.

9:37 When they transferred him again, it was to the hospital. And again, they didn't call us until, you know, they had to move him. And so, you know, driving for an hour and you're you know, mom and I are both trying to figure out is it as bad as it sounds? You you don't want to overreact. But uh when we saw him, he couldn't hear, he couldn't talk, he couldn't move. He just laid in the bed. And it was very heartbreaking because I didn't get to see him one more time, nor did mom is able to have any kind of conversation with him. uh But it was very challenging to get him moved.

10:20 They had him in Indiana. We lived in Illinois. And so that's when I learned what a challenge it is to move a fragile patient. And um so we learned that we had to get permission. We had to know that if dad died on the way, we had to stop at that point in the road and wait for the coroner to come and be released to, you know, go on home. Now, Many prayers were said and we were able to get dad home about 45 minutes before he transitioned. But it allowed all the family that could get there and see him one more time. And I know the hearing is something that goes, that's a very last sense that we have that goes.

11:05 So I'm hopeful that he heard the voices even though he couldn't respond, but he knew that the people in the room were family and loved him. ah It was a big learning experience, it really was. Yeah, that sounds traumatic in many ways too, in terms of not having a choice and getting him move and his quick deterioration. And unfortunately, I see not the part about moving him without requesting to move him, but the part about how quickly someone with dementia declines when they move to a new environment. And there's oftentimes no no right time to move um and moving him closer to at the end for a family to be able to see him is definitely reasonable and appropriate uh and taking that risk of potentially dying on the road to back home must have been really scary too.

12:04 Yeah, we were all, and I was the one that made the choice. So I knew all my family was like having a cow. That's we put it in the country. um But you you have to sometimes just step up and go, I know this is what he wants. Mom had said he wanted to be close to home. And I just felt like we had to take that chance to getting close. um And we made it. And you know, um I'm just grateful the powers to be got us there. Yeah. Yeah. And that you were able to say goodbye, and you didn't want him to die alone. And how much did that experience influence kind of what you do now as an end-of-life doula?

12:52 Every one of these, you know, with family, had a, in my, I believe it was my sophomore year, we lost a young man to a farming accident. So all of those things that led up to that have all influenced me doing this. I think that's why I was a firefighter and our first responder was again, trying to find that way of serving others. And um I didn't know there was a title for what I was doing, you know, sitting by people. helping feed them or dress them or whatever they needed or supporting my mom or whoever. m And I had a girlfriend call me and she had gone to the seminar on being a death doula and she's like, Karen, you've been doing this your whole life.

13:37 All you need to do is get certified. um So I took the course and um I had a double mastectomy in 23. And it was like, all of a sudden it was like, this is what you're supposed to be doing. Retire from work and do what you want to do. And it has been life changing because this is what I have been meant to do. And my goal is to sit with people um and love them and care for them, even though I know nothing about them, because we have that capacity. um there's a lot of people that don't have that.

14:17 So every one of the instances I've gone through with my family and friends, et cetera, this has been my path, I think, all along. And I do appreciate being here at this point and doing this. Yeah, and thank you for sharing that. think this reminds me a lot um of a previous episode where I had interviewed uh a counselor who really is interested in grief counseling. And interestingly, David McLaughorn, I'll link to the show notes for those who want to go back and listen to that episode. when I asked him how he got into grief counseling, and he basically said the same thing. was essentially, his life had gone through a lot of loss and a lot of death and his family, and that he was almost led into this path because of what he had personally experienced.

15:09 And I think in many ways, it's sort of why, you know, I am doing the work that I am doing now, both professionally and on this podcast, is to really kind of support people who were in the same position as I was, you know, as a sandwich generation caregiver. ah So here we are, our loved ones experiences at end of life really inspire us to kind of help other people who might be going through similar things. um So thank you. So let me make sure that I tell the audience what is an end of life doula. And I know that this is someone who is not uh not medical uh in terms of physician or advanced practice provider or nursing, but is someone who is providing that compassionate, thoughtful, dying support and building a relationship with the person who is dying, as well as advocating for their needs and wishes.

16:14 uh How is an end of life doula different or similar to what hospice provides? um We are different, but yet hospice and the doula can and often do work very closely together. So um being a doula, as you said, we are not medical. However, our training does take us through different diseases, what they look like at different stages and the medication so that we understand what we should see when we're there. um So we we can't use patient, so we use client.

16:56 um And our goal is to go in and give relief to the caregiver. Now there is a process where you set up how you interview and then you set up how often do they need you and is that something you can do. And then we're there to um help in any way that we can't bathe. or dress someone that we need to pull them up in the bed, if they need to want to be read to, they just want someone sitting by them. um That gives the caregiver time to step out. An hour, it doesn't sound like a lot of time, but if you're caring for someone all the time, that hour feels wonderful.

17:39 And as one person said, I got to go outside and feel the sun on my face. Now we don't think that's a big deal in everyday life, but if you're doing this, you may not get to go out because we can't leave them too long by themselves. um So what we do is we work with the family. What do they want? What's their goal for this patient? um We uh work with hospice on who's the hospice nurse. How do we touch base with them when we see something um instead of um kind of adding to the craziness of the patient's family's life, we contact hospice and ask them, you know, or let them know what's going on and then hopefully they will come in.

18:30 ah And I think for hospice, we have to understand too, times have changed. We don't have a lot of extra doctors and nurses around. um where a doctor may have come by, you know, once a month or something to see uh a patient or hospice was there more often, maybe once or twice a week. it's gotten to the point doctors can't usually come to a patient's home. And the nurses are overloaded too. So from what I know right now, it's mostly one time every couple of weeks at best because we just don't have enough.

19:10 So that's where doulas can come in because we can step in and be eyes and ears for the hospice nurse and the doctor and even for the family. um And we know the changes in the stages of transition and we know the noises and understand when the body no longer is wanting food or drink, which is something a lot of people don't understand. But we're there to say, no, this is normal. And we have to honor that because if we feed or give too much fluid, we can actually hurt the person and make it worse. So uh Yeah.

20:02 Thank contact lists of who might help someone, you know. So it's a little different than the medical side, but we're seeing how much we do need it. Right. how much it can help the family get through things. And doulas can work in many ways. I'm hopeful at some point we'll have more doulas at the hospital and emergency rooms so that if people are coming in without a family member or have no family member, there's someone that can sit with them when they're getting a diagnosis and what's next. Because that's very traumatic. know, that's just, nobody hears everything.

20:45 I would like to see more Anyways, yeah, yeah. And so all of those things make a difference. And I think of doulas, probably most people have heard about doulas when it comes to childbirth, know, the entering life, entering life, that process of giving birth and navigating the healthcare system and advocating on behalf of your clients in terms of what they need.

21:32 And I think even as a physician, the healthcare system is not easy to navigate and the support. from someone else uh is really very much appreciated. And I think in this culture too, where many people may not have experienced death up close and personal in the same way that maybe prior generations have, uh it is particularly scary to have someone die, to have someone die in front of you and knowing what to do. And I think hospice is great. And my husband is... going to work for a hospice very shortly, you're right in the sense that a lot of times, despite the best intentions of the hospice team, the family almost always have additional questions and have wondering about, know, is this normal?

22:30 Is this expected? Just the amount of, you know, it's first time for many people, even if they're quite older, to experience death kind of personally in that situation. Yeah. Yeah. And I do want to reiterate what you said. We could not do without hospice, but we also have to understand, again, the limitations. And so having those of us who are willing to do this is just we're trying to fill a gap, a need, and be there to support everybody at one of the most challenging times in life. We go through a lot of transitions, but this is our final.

23:11 And so it's really more challenging for people. Right, right, exactly. It's that finality that makes it particularly challenging. do families kind of pay for an end of life doula directly? Is it something where insurance covers or how does it work in terms of cost? um No, we are not, to my knowledge, unless it's happened in the last couple of weeks, I haven't been notified that insurance will pay for it, which we're not surprised. um But in another sense, Dr. Mia, I think it's also a blessing because then you don't have to wait for the paperwork and however long that's going to take.

23:57 uh But yes, your doula will work with you on the cost of what the normal cost is and how We can work with you if you're not able to. um But we right now just have people pay us directly and um I hope that one day maybe we can get it covered because I think it will be such a blessing to everyone. Is there an average cost per hour for a Codulas or it kind of varies depending on who you contact? think it varies and it depends on your county, your state, um and also how much you want that person to.

24:42 um If you need a lot of help, then that's up to you and the doula to discuss that and what that dollar amount might be. um So I think it's hard to set just because it depends on where you're at. And if I say a dollar figure for Winston-Salem, it's going to be totally different, you know, in Raleigh or New York or wherever. But the doula, when you're, you know, given a name and number and you connect, then you can go over all of that. But I believe I can say pretty openly that everybody works with our patients.

25:24 Gotcha. Okay. ah And we'll also include your contact information in the show notes as well for people who might want to reach out to you directly for folks who might live in North Carolina. And I know we had also talked a little bit just about, you know, how thinking about death and preparing for the dying process may also change how we live. What have you seen in terms of your clients? Um, one of the great things I feel is that I've learned a lot more about when you learn about dying, you learn about living. And in that, what we see is the family and the patient may or may not, depending on where they're at in their process, that everything is so chaotic at the end or close to the end.

26:18 And the family members are upset, they can be mad or angry because we're losing a physical body. We've got the memories, nobody can take those from us, but having that ability to hold somebody's hand or, you know, hey dad, what would you do in this instance? We lose that and that's part of life. But if we go to the point of handling that death piece early on, which is getting your advanced directives, your financial affairs in order. um There are some things you can do for emotional and mental and um having those conversations with all the people before you get a diagnosis would be wonderful.

27:04 Now know that can't always happen but when we take that piece out that patient or client can now take a deep breath because all of that's done. Everybody knows their piece in what happens and At that point, now people can look at living a little differently and especially the client. Maybe there's thank yous that haven't been said. Maybe there's someone that they need to contact that they feel they have to have that conversation. A lot of that gets missed because when you've got the diagnosis and now you're trying to get all the paperwork done and get a hold of all the people, it just feels like the weight of the world is on you.

27:44 And so... getting those things taken care of earlier than later is always a blessing. And I can say that with an understanding because my son-in-law was killed by drunk drivers at 40. And they had not really put life insurance in the plan where they worked because they were young and my daughter was 36. So it's like, we got time. Well, we never know. And so I think that everybody wherever you're at if you're married you have children you really need to do it now because it's easy to change it and update it but it's it's it's really awful yeah go back in time and and I wish they had documents and things in place and plan set.

28:34 ah Yeah, I think that that makes total sense. And I think ah I have had a close friend pass away from a drunk driver when we were juniors in college. And I think that experience really shaped a lot of. My outlook on life as well, and that, you know, death can happen at any time, even when you're young. And perhaps that also influences, you know, what I do now, because I think death is not necessarily something super scary to me in the sense that we all die. It's just a matter of time, but it's about, you know, how do we better live with the time that we have not knowing what the future may hold.

29:22 I'm curious, how would you, what advice would you give to say a caregiver who is taking care of someone who has dementia, may not be able to really communicate what their needs are, what their wishes are, or even who they want to say goodbye to? And that's a challenge, and you know as well as I do, that's a tough part when there's no, um whether it's verbal or even able to write because they often can't write anymore. um I think the first thing, Dr. Mia, is grace. We have to have grace for ourselves when we're doing the caregiving, and we have to have grace for the person that we're caring for.

30:03 And a big part of that to me is that when you're caring for them, you need patience. as much as we can and that's hard. I'm not always a patient person, but I try. But they no longer can control what they're thinking and what they're doing and what they're feeling. And so, you know, in the instance of my dad, he came out with, you know, more negative ways of things coming out. And it's very difficult. You know, my mom, you know, they were almost 40 married 40 years to see what they've come through and where they're at at this end. It just doesn't seem right.

30:43 But I think if we can step back as much as possible, whether it's 15 minutes, 30 minutes, an hour is optimum, but you have to take those breaks to walk away from it because it will build up. Even if you're trying your best to go, it's OK. We tend to let it build up in us, and that's not good for us. And I think. Even my mom made the comment when I talked to her, she said it is a living hell watching them go through all of this and knowing you can do nothing about it. um And having gone through it more than once, um she said the best thing you can do is love and care for each other and know that it's never going to be easy.

31:28 There's no easy way for it to be done. So um I think when you go into it, if possible, my view would be that if you can have four or five people, whether it's church, family, friends, that can come in and help you. know, it takes for dad when they wanted us to look at taking them home, two people had to be there 24 hours a day. Well, that's not always possible because most are still working and have kids, et cetera. So even if you can get help for an hour or two and get a break. and then maybe later in the day you get it.

32:08 But um often you'll find people that will help you that can love and care for someone in these situations. So don't take it on yourself. It's gonna take you down quickly, health-wise. Yeah, I think that's where so many caregivers really struggle, whether it's financially or just being more socially isolated now. Having that community to rely upon is more challenging than ever compared to when, you know, people lived more close to their extended family. And this is where I think asking for very detailed and specific asks, like, you come for an hour on Thursday while I go?

32:55 um A lot of times I know a lot of my patients don't want to ask because they don't want to be a burden for other people. And so it's the primary caregiver that takes it on all for him or herself. um And that it's easy for people who are not in that situation to say take a break, but it's definitely um more difficult for the person who is doing that caregiving to have to step back and take a break and find someone who's willing to help as well as being able to financially afford that help. All of that is where I think as a society, we could do better at supporting caregivers.

33:41 who are doing this extraordinary work um every day, day in and day out and without a break. um I think one other thing I wanted to comment on was just about the fact that for people living with dementia, now, especially at the stage where a lot of caregivers are getting involved, there's nothing that's going to make them better in terms of that disease and it is watching the decline, whether it's slow or fast. And sometimes people have even asked like, how could I do this work? Because it is watching people decline and telling people that they have dementia or memory changes.

34:25 And I think to me, it's always been about presence rather than a cure. The being present to the best of our ability, being that bearing witness to what they're going through, whether as an end of life doula or medical professional or even family member. I think that is such a sacred thing. And it's not something that is a cure, obviously, but it's definitely something that people need and may not have anyone to even bear presence or to be along for that journey.

35:07 And so to me, I find it that if I'm able to be part of the journey and bear witness and help a little bit, to me that is still a worthwhile thing to do. um And I'm sure you feel the same way, otherwise you wouldn't be a doula. Yes. And I think, you know, to your point, for me, I often have people go, well, why would you do this? You know, this is death. Well, to me, death should be celebrated because this person was in my life. Yes, they've said things that hurt my feelings, but they've also taught me things. And sometimes it's been 10 years or more later and I go, oh, I heard the words, but I didn't hear the meaning.

35:52 And it sinks in. So um I think those moments are important, but I also think when you can be present and show love and care, no matter how little you know about a person, that is something they take in as a blessing because it's hard for a lot of people to do that and it's fine. Not all of us are made the same, but I am ah obviously blessed and honored every time someone needs me to be with them because It is that final transition. It's a tough one. And if I can make the smallest difference in that transition, then I've done well.

36:34 So I think if we can go into it with being present and love and caring and try to put the other kind of aside of what's really in front of us, it will help you get through it. Thank you for that, Karen. And thank you for those who are listening. know this, you know, talking about death is never easy, but I think it's really what needs to be talked about more often. So thank you for joining us and ah we will talk to you next time. Thank you.