Aging Answers - Episode 7: End of Life Doula Transcript - Norris McLaughlin, P.A., Attorneys at Law

Episode 7: End of Life Doula Transcript

Shana Siegel: Welcome to Norris McLaughlin’s Aging Answers, a limited podcast series discussing the key topics of elder law planning and long-term care. I’m your host, Shanna Siegel, practice group leader of the Elder Law Group and member at Norris McLaughlin. In this episode, I am joined by Adrian Allotey to talk about end-of-life planning. Hi, Adrian. How are you?

Adrian Allotey: Hey, thanks for having me.

Shana Siegel: So, I’m really excited to talk to you about end-of-life issues. And you are a death doula. So tell me, what does that mean?

Adrian Allotey: Yeah, so let me just back up for a second and say that, you know. Those who are douling, for lack of a better word, in this work, sometimes they call themselves end-of-life doula, sometimes they’ll use the word, you know, end-of-life midwife, uh, but it’s basically similar to that of a birth doula. We come alongside of that. People who have a terminal diagnosis or an advanced stage illness and provide that emotional mental and spiritual support.

Shana Siegel: Great And how did you get into this career?

Adrian Allotey: It was a calling on my life. So I was in a very High paid for lack of a better word again position that wasn’t bringing out the best of me So what I started doing was I said, well, how am I going to balance this out? And so I started doing hospice volunteer work and when I walked into my first room, I knew that was where I was supposed to be. And so slowly but surely, I walked away from a career of 20 plus years, great salary, and five-dollar copayment for my, uh, medical expenses and decided that this was the work I was going to do. So eventually went and got certified and then I worked, uh, volunteered for two local hospitals and they sent me to get certified in another 18-month program, which is pretty, pretty amazing to have two end-of-life programs, trainings under my belt.

Shana Siegel: That’s great. So what do you think is the most important thing you can teach clients about end of life?

Adrian Allotey: So, I would say when I enter into homes, the advanced care. Directives, right?

Shana Siegel: Sure.

Adrian Allotey So, some have them, some have them and put them away, and some, you know, do not have them. So, what I normally say, what’s most important is communication. And so, it’s great to have those paperwork in place, but you want to make sure that your healthcare proxy can do that. Like, it’s not always the next of kin, it’s not always your spouse. And you also want to know that they know that they’re the healthcare proxy. And so it’s about having conversations over a period of time. So that way, when they get that call and have to make that decision, they know intimately like what you will want.

Shana Siegel: Yeah, we always say that it’s, you know, the documents are great, but it’s really about the conversation and making sure people understand. Everybody in the family needs to understand so there’s not conflict, right?

Adrian Allotey: Absolutely.

Shana Siegel: Yeah. Yeah. So, you’re obviously pro-advanced directives as part of the conversation. What recommendations do you make to people about making advanced directives? Yeah.

Adrian Allotey: So, in addition to being pro advanced directive, I’m also pro that non-medical support, right? We have our medical professionals and we need those medical professionals sometimes because of their time limit. They may not be able to spend that detailed amount of time to make sure that those emotional, mental, and spiritual needs are met. And so what I’m really most pro is looking at the non-medical professionals that can come alongside of you and provide that support that maybe a doctor doesn’t have the time to do or a nurse doesn’t have the time to sit and linger and really examine, like what’s going on that will make that end of life, a better experience, for lack of a better word.

Shana Siegel: Right. So, some of that is provided by hospice. How does hospice and end-of-life doula’s kind of Work together. Is there overlap?

Adrian Allotey: Yeah, so one of the things that I think is really important Is that hospice is in the home and so if I go into a family and hospice is not there I will educate educate educate because you know, they do that medical piece You have that care management nurse who will oversee the medical process I don’t do that and it’s very important that you have access to a medical team once you have that terminal diagnosis but what I would like to say is that I get to again linger. So I am almost when the hospice team is not there. I become the eyes and ears. So if there’s anything that’s going on, no matter how small I’m able to communicate that to the hospice team and usually they’ll take that Information and interpret it under their medical eyes. And so that way they’re not It’s not so much reactive, they’re more proactive to be able to provide that care. And so, we definitely walk alongside of the hospice team. We have the National Hospice Palliative Care Organization, and they actually have a subdivision that focuses on end of life doulas. You know, as we advance in this work, they’re realizing the importance, and so they, they’re out there talking on our behalf as well.

Shana Siegel: Oh, that’s great.

Adrian Allotey: Yeah.

Shana Siegel: Yeah. And how does that also work with chaplains? Because chaplains are a part of the hospice team, aren’t they?

Adrian Allotey: Yeah. So unfortunately, again, it’s like a time issue, right? So sometimes you’ll find that hospice will, and it’s not all hospice, but maybe they’ll get, The patients will get a visit like once a month and you know those those needs a little bit more pressing right and it’s not to say that a hospice would not send someone in you know more often than once a month but it’s it’s really critical to just have that time for not only the patient but also their families as well and then you know you have to The social worker for the hospice, right? So sometimes they may visit once every other week. But I just find that people need more hand holding.

Shana Siegel: Sure.

Adrian Allotey: And they also need to also prepare for like the practical things at the end of life. And so it’s that emotional, mental, and spiritual. You won’t hear me say that enough. But it’s also like the practical things that people have not thought of, you know. Do you want to create a social media policy you know, like just things that people don’t. Think of that a doula will be there to examine and be able to, again, to create that optimum, what they desire and the life passing. And so, you know, one of the things I do, I’m not sure any other doula does, but if a family is open, I’ll do a dress rehearsal.

Shana Siegel: Wow.

Adrian Allotey: And so what that does, it, it brings humor later in life, but it also, one of the things why deaf is your. One of the biggest fears is that it’s like the unknown. So if we do a dress rehearsal and people are at the table, they know what to expect. They know that anything can go anyway, but it’s just lessens the fear and the concern in all those internal things that are going on within the patient, but also the family.

Shana Siegel: Yeah. Yeah. Well, again, it sounds like it’s about having that conversation and communication, right?

Adrian Allotey: Absolutely.

Shana Siegel: So, what are some other planning that you recommend people do for end of life? Maybe some of that practical. Pieces.

Adrian Allotey: Yeah, and not only the practical pieces. I always like to think and end the life in three phases. One, you get the diagnosis, right? And so you’re in shock, you know, usually when I come along families, my first goal is to stabilize the environment. And then, you know, once the environment is stabilized, I like to think that you have Like, it’s almost a fun time, right? So, you can, if the family’s up to it, if the person who has a terminal diagnosis, you know, they can plan their home going services. You can give them the tools to be able to make decisions, even as far as once they go into that last phase, the active dying phase. So, like, what do you want that to look like? Some people, you know, don’t mind people looking over them. Some people are okay with the family members watching football around them.

The grandchildren doing choo choo trains. Some want the candles. Some don’t want the candles. And so, who needs to be called?

Shana Siegel: Right.

Adrian Allotey: Who needs to be contacted? And I also encourage people, once you take that last breath, like, what do you want to see happen while that body is still breaking down? And so that’s a very, you know, for lack of a better word, spiritual time. And so are you okay with the body being taken out right away? Some people are. But some people will kind of want to linger, you know, I advise them maybe to open the windows, read some poems, prayers, scriptures, whatever it is that feels right for them. So it’s, there’s so many things. It all is based off of, you know, like what’s going on in the family. What are the individual needs?

Shana Siegel: Wow. It sounds like it could really be a beautiful time instead of that, like just shock and immediate grief. You know, it’s just, it’s, it feels like. You can make it much more peaceful if you think about it ahead of time.

Adrian Allotey: Yeah. And so this research just said that that proves that exact point. The other thing I’ll say is that I really try not to, but sometimes you’ll find me using words like better. Like I think all end of life breaths are amazing. You know, that they’re all, I don’t think there’s such a thing as a bad death. And so there’s just something that happens around death that even though as an outsider, it may be as a. clinician. We may see that there are things around death that we would like not to happen. But those final moments, I think they’re beautiful for each and every one.

Shana Siegel: Yeah. So what are some of the biggest myths and like misconceptions that you find families have surrounding end of life?

Adrian Allotey: I think that the biggest one, the biggest hurdle is with them being okay that they don’t know. You know, they don’t know when the last breath is going to happen. They don’t know, you know, what’s going to happen to mom. One of the other things about planning is, is looking at the immediate family members. Sometimes if there’s a spouse who’s going to take their last breath, it’s really important that we know what’s going to happen to that other spouse. And so one of the things that we plan for, and I know I may be jumping around, but this is so exciting, is that what’s going to happen to, if mom is passing, what’s going to happen to dad?

Shana Siegel: Right.

Adrian Allotey: The first 24 hours, the first weekend, the first month, because sometimes lightening that load will make moms, again, transition, you know, more peaceful, for lack of a better word.

Shana Siegel: No, that makes a lot of sense. Again, it comes back to planning and communication.

Adrian Allotey: Yeah, yeah, what you all do so well. It’s all about.

Shana Siegel: So, what we’ve been talking about so far is when everybody’s on the same page, it’s peaceful, it’s lovely. What about when it’s not like that? I mean, unfortunately, I see those cases, but do you get called in to kind of deal with some of the family conflict to sort that out?

Adrian Allotey: Absolutely, absolutely. So one of the things I say is that everybody wants to be heard. It really goes down to that. So usually the person in the family who has the loudest mouth and the biggest voice is usually the one that feels like or perceives that they’re not being heard. And so, once you give people an opportunity to show up as their true selves, whether it’s something that society would agree with or not, all of a sudden the conflict starts to minimize. And then, you know, I have some, what I call, harmony techniques that I teach to family members to be able to Bring them together. But if we can’t get them together, then, you know, I may create a visiting schedule, you know, as a family, we may create codes of conduct, you know, so that way we agree that when we show up, this is how we’re going to show up. And so again, there’s, you know, something as small as just making a connection. So if you and I were having a hard time getting along, I could just say the human in me sees the human in you. Um, The blood in me, the red blood that’s running through my vein is also running through your veins. Or even the eye-glassier in me sees the eye-glassier in you. Just a connection can make a, can go a long way. And so we’re not going to solve, you know, family dynamics in, you know, in less than a year. But it’s just a way for them to come along and, you know, get together and with less conflict as possible.

Shana Siegel: Right. Well, I think again, that communication piece, I mean, we try and talk to families about maybe, maybe we need to do a family meeting so that everybody’s on the same page. Everybody knows who’s making the decision, what mom and dad wanted, you know, so we can try to minimize the conflicts.

Adrian Allotey: Yeah. And sometimes, you know, even though the advanced care planning documents are in place. An end-of-life doula as myself will go in and meet with mom separately. I always say mom, but We’ll meet with mom separately just so I can you know articulate those legal words into more common day words and they know that okay I took mom into a separate place. No one else was around to have any type of influence. And then, you know, bring mom out, of course, over some different sessions to say, this is really what mom wants. Sure that there was a neutral party there having those conversations.

Shana Siegel: Yeah, yeah, no, that’s great. You know, we try and do that as well. Recently, I’ve been asked by several clients about the New Jersey Aid in Dying statute. And I have worked with a few clients on that process. I’m wondering if you’ve had some experience with this and, you know, how you can share that.

Adrian Allotey: Yeah, so I’ve actually been certified in the Medical Aid in Dying.

Shana Siegel: Okay, great.

Adrian Allotey: I would say that everyone should be educated. A lot of people don’t know that that’s an option. It’s a personal decision. Where I feel most comfortable is, a lot of doulas are going in there at the final moment to help administer, to support the family. I feel more comfortable getting them to the point of making that decision.

So, supporting them, letting them know it’s okay if that’s your decision. Education, I may not be the one that goes in and mixes the mixture. This is not for me, but I can support them emotionally, mentally, and spiritually. And so again, the doulas are in there in the final moments. That’s just not necessarily what I do, but I have been trained. So I understand what’s involved in that whole process.

Shana Siegel: Right. Because there’s a process of getting approval and making sure you kind of check all the boxes. So I’m sure you can guide families in peace of it yeah.

Adrian Allotey: Absolutely, you know, the research also shows that just because you have the medicine doesn’t mean that they’re going to. You know, take it. Something else may change that decision.

Shana Siegel: Right. Often. Yeah.

Adrian Allotey: Yeah.

Shana Siegel: Yeah. So, what scenarios have you seen where you would recommend clients working with an elder law attorney? You’ve talked about advanced directives, you know, what, what kind of, how do you work side by side with attorneys?

Adrian Allotey: So, I applaud the attorneys for doing what you all do. The one thing that I really realized with our elder care attorneys is that it’s not a one-time deal, like you all have created relationships and people come back and they make changes outside of the advanced care directives. I think we need to have conversations about finances. And so a lot of what I would you know, talk to people about is to make sure financially as well as that whole will piece too right. One of the things that I do help my clients do is that if it’s possible and you want someone to have something, maybe we could come up with a way to give it before your last breath. But financially, as well as advanced care planning, as well as all the resources, I mean, you all. As a profession, but in this particular firm as well, you do a great job of really hand holding your clients because it’s more than just those documents, right? Sure. And it’s a place where they feel comfortable to come and ask you for resources.

Shana Siegel: Oh, absolutely. Yeah. Great. Is there anything else you want to share with our listeners before we go?

Adrian Allotey: Well, I guess the biggest thing that there’s non-medical assistance advocacy there to support you through all stages of the medical healthcare field. I would say that that’s my biggest probably take away that, you know, seek out those resources to be able to. You know, again, advocate and support you and, you know, hold your hand and hold your loved one’s hand through any type of medical situation.

Shana Siegel: Yeah. I mean, people don’t have to do this alone, you know, whether it’s dealing with the, you know, with the legal documents or dealing with the, you know, social and spiritual support you provide, you know, it’s, it’s important. People really need to take advantage of what’s out there.

Adrian Allotey: I would agree and I, I thank you for what you all are doing here as well. It makes a big difference in our world, right? Well, thank you so much, Adrienne. It was really wonderful to talk to you. This has been Norris McLaughlin’s Aging Answers, a limited podcast series discussing key topics. Revolving around elder law and long-term care planning. I want to thank you, the listener, for being a part of our conversation. And again, thank you, Adrian, for talking with us. Be sure to tune in next time for a brand-new episode. And if you’d like to learn more about our work, please email me at aginganswers@norris-law.com.