Podcast #106 Dignity Day: The Experience of Choosing Medical Aid in Dying for Individuals and Families — Gabby Jimenez — Hospice Nurse, Doula and End of Life Educator

Hospice Nurse and dynamic educator, Gabby Jimenez shares thoughts from her latest book, “⁠Dignity Day: A guidebook for anyone searching for comfort and clarity relative to the end-of-life medications⁠.” This conversation goes beyond the logistics of MAID to get at the heart of what is happening for terminally ill individuals and their families. Why would someone choose MAID? How do others feel about that? What happens if we walk away? Can we make the space to “step into their shoes”? Written with compassion for wherever someone stands in relation to this experience – the terminally ill person, the spouse, the children, the loved ones – this book may help you have a thoughtful, feeling-informed conversation.

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Gabby’s Website – www.thehospiceheart.net

Transcript:

Diane Hullet: [00:00:00] Hi, I’m Diane Hullet and welcome to the best life, best death podcast. I’m excited to be here today with a guest I’ve had on more than once because I just love our conversations. I think she brings so much to the table. This is Gabrielle Jimenez. Hi 

Gabby Jimenez: Gabby. Hi Diane. Nice to be here with you again. 

Diane Hullet: It’s really nice.

Gabby did a beautiful podcast with me about the difference between birth and death doulas. And that’s been one that people just go back to again and again. So Gabby’s working on a new four part series of books. And these are slim books that are meant to be very accessible and very readable for people at the time that they need them.

So I really wanted to talk to her about the second book in that series. The first book is called end of life tips. And it is also a really, really good book. The second book is called Dignity Day. [00:01:00] And Gabby, you’ve written just especially about medical aid in dying. And I thought we should just start by kind of, you know, talking about the different terms around medical assistance in dying, medical aid in dying, MADE.

It has slightly different names in different states. What, what would you say 

Gabby Jimenez: about that? So I actually have started calling it medical aid in dying because that seems to be the name that most people resonate with. In California, we call it an end of life option act and we’ve shortened it by its initials and call it a lower.

The other name I’ve heard it calls is death with dignity. And I think, you know, there’s people that call it assisted suicide and that kind of things I try to stay away from the word suicide because the connotation is so heavy and And while they are taking medications to end their life, it’s so much more than that.

And I really want to try to, [00:02:00] to call it what it is, which is medical aid in dying. And I love that name because it makes sense to me. Yes, 

Diane Hullet: yes. And you know, you’ve been with over 100 people who’ve ended their lives with medical aid and dying. And I think you write so beautifully about that experience. And this book, I was so touched because it’s really for the person who’s considering that and also for the families who may or may not understand that choice.

And I, I just, you know, what people are feeling and thinking as they go towards this decision. Thank you. Take us kind of through what steps land someone on this doorstep where this is what they 

Gabby Jimenez: want to do. Well, well, that’s a big, that’s a big gulp right there. So you know, one of the best compliments or reviews I’ve gotten on this book was about a woman who was preparing to say goodbye to her husband who had exercised his legal right [00:03:00] to do this.

And I had told her about my book because I thought it might help her to understand what he was coming from. She, she went and got the book, which was not necessarily, well, I wanted to offer it to her, but she went and got it, so she read it, and then he read it, and then they read it together, which really, that sort of just wraps around my intention with this book perfectly, because the idea is for the person who’s choosing to do this to, to give them the comfort that they need, maybe some clarity, Maybe to remove some fear to help them prepare and know what to expect and then for the caregiver to be able to say, this is how you can support them.

You know, one of the topics in there is put yourself in their shoes. Right? It’s, it’s understanding [00:04:00] this from someone else’s perspective, removing your personal feeling from it, to not, not let any of your distractions or controversy or anything else that might make you see it as such a negative choice.

And yet it’s, it’s the most difficult choice. Some, one of the most difficult choices someone can make and so brave. So I don’t know if that necessarily answered your question, really. But I think the idea Is to, you know, just like an end of life care, right, as the work that you and I both do is to keep the conversation going.

People think if they talk about death and dying, it’ll happen sooner. Well, that is not true. And I think they are so afraid to have the conversation because it maybe it just brings the reality of death to the surface. We’re all going to die. That is just part of life. I want to make the conversation easier and this book and end of life tips as well was designed to to [00:05:00] answer some questions remove fear offer clarity, but allow a conversation to flow, a little bit more comfortably.

And with less fear, 

Diane Hullet: I love that in the chapter you mentioned, put yourself in their shoes is the one that really jumped out at me because here we are in healthy bodies, some of us at this moment, and we sort of can’t imagine like what, what would take someone to this point? And you say so clearly imagine being the person who is told they’re going to die.

far sooner than they had hoped because of a terminal diagnosis that will more than likely violate their body with pain, physical pain, emotional pain, spiritual pain. They’ll experience agitation, anxiety, restlessness, fatigue, weakness, confusion, and or fear. That is heavy news and it will take a toll. You try to be hopeful and optimistic.

You [00:06:00] try to reassure the people who love you that you’re fine, but it’s very, very hard. And then jumping ahead a paragraph, you say, time is no longer yours to manage. Your remaining time is not in your hands. You have no control. You were at the mercy of the illness, the diagnosis, the symptoms, the physical changes, the emotional exhaustion, and the spiritual tug of war that you will experience every single day.

Everyone around you wants more time. You want more time, but not like this. not riddled with pain and discomfort and waiting day after day for the inevitable to come. And then you talk a little bit also very Concretely about what has to be in place for this to even be a possible choice, but when you listed those things that are happening in the mind and heart of the person with the pain and the diagnosis, I could really feel that [00:07:00] sense of standing in their shoes.

And it’s very different than standing as the daughter or the son or the partner, or, you know, the sweetheart who says, how could you do this? There are reasons that people choose Dignity Day. 

Gabby Jimenez: Well, when you read it back to me, well, you can see my face. I, I felt sad, you know, and, and I, and it’s because that’s what I’ve witnessed.

I, I’ve not been in their shoes. I don’t know what that feels like, but I know from what I’ve witnessed that that is what they feel like. And I can’t help but think if I can let you see it from their perspective, would you be a little less angry or judgmental or hesitant to support them. And I got, as you read those words back to me, it really affected me in such an emotional way because that’s their reality.

That is how they feel. And, and you know, the, [00:08:00] it’s not just physical pain. It’s not just agitation. It’s not just restlessness and struggle with breath. It is the spiritual tug of war that happens. And when we step away, when we walk away from someone, that tug of war becomes even harder. I think our role is to remember that this is not about us.

Even though we’ll have a feeling and a reaction and of course an opinion, but if they’re making that decision, I think it’s important that we ask them why. 

Diane Hullet: Yeah, the why is big, and then truly listening to hear that why without our overlay of our why and how difficult it might be for us. I think that this this book is so beautiful because it’s written to Try to get in the minds of the people making the choice and also saying, if you’re a family member, here’s what you might be [00:09:00] feeling.

And I don’t know if it’s easy, you know, to lay out some of the things. What do family members go through? 

Gabby Jimenez: They go through a myriad of different things. You know, the most common is that they’re supportive. You know, here’s the thing, when someone is dying in general, They’ve had a long battle with an illness.

We know that this is happening. We know they are going to die. We have anticipated this death from the date of diagnosis. We’re in, we have anticipatory grief, every step of the way, we are prepared for it. Well when that last breath is taken. It’s as though we had absolutely no idea it was happening, right, the same thing happens here, you have someone that you love they’ve they’ve got an illness that is making life.

In many ways unbearable for them. And so they’ve made this brave decision and you’re saying, yes, yes. That’s what I want for you. I want peace for you. I want grace and ease for you. You deserve that. I love you. I support this. And then moments before those medications are [00:10:00] taken, I watch their face and I see the look on it like, Oh, wow, this is really actually happening.

It’s the same feeling. It’s the reality that. This is happening. They are going to die. And you’ve been so unselfish, right? You’ve, you’ve done everything you can to support them. And when they, they pick up the bottle or the glass and they take the medications, you want to scream so loud. Don’t do it. Don’t do it.

Don’t do it. Right. But you can’t. So they too have a, an emotional, spiritual tug of war because they want so badly for them not to take it. But they want them so badly for them to be without pain and suffering. So it’s, it’s hard on both sides. And while different, it is equally as painful. Well 

Diane Hullet: said. And what about people who feel that they just can’t be a part of it?

I think you’ve had that, those kinds of conversations too, where someone says, you know, I can’t believe grandma is choosing this, but I will not be there when [00:11:00] it happens. 

Gabby Jimenez: You know, I, I support them. And I explain that this is your choice. You don’t have to be here. You do not have to support this. I ask that you not project your anger or perhaps your faith.

On to someone, because I don’t think that’s for us to do anyway, but I, I want to give people permission to step away, but before they do, I ask them this very important question, which I put in the book as well, is if you walk away and you walk out that door and they do this without you at their bedside, will you regret that?

And if your answer is yes, don’t go. If you can make peace with your decision, then walk away. It’s okay. But I’m not just worried about the person taking the medications. I’m worried about the person that’s walked away because I think they’re going to regret it. I think they have allowed other things [00:12:00] interfere with, with maybe what’s truly right and best for the person who’s made this brave choice.

I don’t think people really want to wake up, walk away. I think that they, there’s so much uncertainty and fear that they are motivated by that. All I ask is that they don’t walk away. 

Diane Hullet: Huge, huge. And you include in the book some frequently asked questions and you include some very concrete physical descriptions like this is probably what will happen.

This is sometimes what happens, not every time, but you give information in order to try to be clear for the people, what they’re walking into, what whichever side of the bed they’re on, what they’re walking into and staying with. 

Gabby Jimenez: Yeah, the questions, you know, I think the most important question in there is is will this be on the death certificate?

Because people worry that others will know what [00:13:00] they’ve chosen to do. That is not our story to tell. I am in no business in position to to share your personal decisions with anyone. I will never do that. I respect it too much. So when someone dies, what goes on their death certificate is their dot, the causes of death, their diagnosis.

Whether you announce it to the world and write 50 blogs about it, or you’ve just kept it to an intimate group of two, that is your story to tell. And I think that’s really important for people to know and, and I think it’s also important for the person taking it and those who are gonna be witnessing it, what to expect.

The most startling, which I mentioned in the book, is the moment the medications really take hold, often the body will literally just stop. The heart stops, everything stops, and for a moment there’s a silence in the room that is quieter than anything you’ve ever heard because you think at that moment that that is it.

And then they take this huge [00:14:00] gasping breath which is so hard to hear and it’s, it’s sometimes scary, but if I tell them ahead of time they know what’s happening and it happens, I’ll look over at the family and go, it’s okay, remember we talked about this. And they’ll go, okay, okay. And then fear is gone.

Uncertainty is gone, and they carry forward with providing care and support to their person. So I think if you tell them ahead of time, this goes right back to what we were talking about earlier, which is the why. This is what happens. If you understand why, then when it happens, you might be less afraid.

You might feel more confident at the bedside. You might be able to provide better support. 

Diane Hullet: I love there’s a beautiful opening that you put in, Gabby, where you talk about the first person that you were with. And you say she’s one of the bravest people you ever met. And back then there were 90 capsules that had to be opened and put into a little bit of water, four ounces of water.

And you. And this is really so you [00:15:00] right you felt this and imbued this with ceremony. And so with each capsule that was opened and poured out you said something about her, you know, something like I wish you peace, I wish you freedom with your suffering. I thank you for trusting me. I’m so proud of you.

I’m honored to be here today. And I think That’s a really interesting aspect of this because it’s medical aid in dying, but there’s this real possibility of also creating a ritual, a ceremony, an acknowledgement of what’s happening as, as you’re going towards it. And that strikes me as a piece of the richness that someone like you brings to the bedside in these cases.

Gabby Jimenez: I love that you, you read that part and took it that way because you know me, almost everything I do has some sense of ritual or ceremony to it, because I truly believe for those that are going to say goodbye. I think that it eases their [00:16:00] grief, a little when they have that beautiful sort of. sometimes spiritual connection that is that of ritual and ceremony and depth that experience the last breath is so sacred and and deserves to be treated as such so to be able to offer that in that situation is so I think important.

The story that I shared in there about the 90 capsules and offering her a, you know, a prayer or words of comfort and ease, you know, these were, these were messages I wanted her to have. She wasn’t present for that. She was in the other room. And so it was almost as though I was sort of sending them through You know, telepathically sending her these messages so that she would feel the peace I wanted her to have so badly.

It was, it was 90 capsules one at a time and scraping the insides with a toothpick so nothing is missed and watching the pile of [00:17:00] powder as it builds and knowing what that really means. Every time I’m with someone as the medications are being prepared and they’re handed to this person and they’re taking them, I am made very well aware that we are handing them medications that will end their life.

That is huge to me. And I I have to stop for a moment and take a breath and say something. Often I will look at that person and I’ll say, I just need you to know what an honor it is for me to be here with you today. I don’t take this lightly. Thank you for trusting me. Or I’ll whisper, may your journey be peaceful and beautiful.

You deserve that. And, and the things that I mentioned in this, that I’m proud of you. I am so proud of you for doing this. You were so brave and you deserve to find peace and ease and grace. But with everything, even over the years, this has changed, right? The way we give the medications, but I still encourage [00:18:00] that type of ritual and ceremony.

Diane Hullet: I love that so much because I was really struck also in the section about walking their shoes, how much Person, the dying person wants to be, you know, they want the approval of their family. They want to be seen as fine. They want to be loved. They don’t want to disappoint. And so there’s something about when you say that you’re so proud of the person and they’re so brave.

I just love that because I think somehow we end up in kind of this battle metaphor of they stopped fighting or they gave up or they lost the battle and it just feels so demeaning to me at a time when in fact they’re making an incredibly brave choice. 

Gabby Jimenez: Absolutely. And it is brave. I mean, they’re already dying, right?

And, and there must be a part in them somewhere that says, but what if I still have more time? Would it [00:19:00] be worth it to just hold on? And there’s also the need to not burden those at the bedside. You don’t want them to feel bad or guilty or sadder than they already do. So, okay, I will forego my pain and my discomfort so that they don’t feel more.

Right. But at the end of the day, that person saying, but wait, this is about me. And I applaud that because they’re already dying. And I think people forget that part. Definitely. They’re already dying. They’re already taking that journey. They’re already processing the reality of it. They already know where this is going.

It’s going to happen anyway. We treat our animals better than we treat our human beings. You know, I put that in the book as well. If our animals, and I’ve had to put animals to sleep as well. If they were suffering, we immediately respond. We do not want that for them. It’s difficult. We are sad. [00:20:00] We, it’s a death.

Why do we not have that same compassion for the people we love? It’s because we’re selfish. I am selfish. I want them longer. I want more time. When my brother was dying, He had not made his plans, mate. You know, we didn’t know what he wanted. And then one day that he woke up, the doctor came to the bedside and said, Okay, Ben, do you, you know, if we can’t take you off the high flow oxygen and the, and the everything else that’s keeping you alive, we may have to put in a trach.

Is that okay? And he’s nodding yes. And I’m like, What? You know, and then we’ll probably have to put in a feeding tube. And he’s like, yes. And I’m like, what? And, and you’ll have to live in a home where they are going to care for you. You probably won’t go home. And he’s like, yes. And, and the whole time I’m like, no, no, no.

Do I want him to die? No, but I don’t want him to suffer. I don’t want that to be the life that he lives. And I remember leaving and following the doctor down the hall. Can you please bring in someone from [00:21:00] palliative care? And can you please have them explain to my brother what this means? The truth of the matter is my brother wanted to live at any cost.

He didn’t want to die. He didn’t want to leave his family, his daughter, his son. He didn’t want, we had just found each other again on his deathbed. Maybe he didn’t want to leave me either. He didn’t want to die. I don’t think people want to die. I just don’t think they want to suffer anymore. And he didn’t understand that.

And I felt selfishly I wanted to keep him, but unselfishly, I didn’t want that to be how he lived his life. For however long he might have been gifted. I didn’t want him hooked up to machines. I didn’t want him dependent on that. That’s not quality of life. And, and it was hard for me to speak up on that.

Right. And at the end of the day, he didn’t make it. And, and they had they, they beat him [00:22:00] to a pulp because he didn’t have, you know, he was full code. I don’t want that either. I think we should have the right to make decisions relative to how we want to die. When we’re already dying, and 

Diane Hullet: this is your bottom line, your bottom line really is what you say right in the beginning.

Autonomy can be defined as the ability of a person to make his or her own decisions. And then you say, at its most basic, the concept of human dignity is the belief that all people hold a special value that is tied solely to their humanity. It has nothing to do with their class, race, gender, religion, abilities, or any other factor other than them being human.

And you really believe so powerfully in that humanity and that individual autonomy to make choice. 

Gabby Jimenez: When someone is given a diagnosis. It’s a terminal [00:23:00] diagnosis. They are told you have six months or less to live. It is at that moment, sometimes sooner than others, when your autonomy, your voice and your choice are taken from you.

Everybody else does things for you, they care for you, they clean you, they feed you, they bathe you, they take care of you, they make decisions on your behalf. You are lying in a bed without a voice, without autonomy, without choices. And I don’t think that’s fair. And if given the opportunity to say, this is how I want to be cared for when I die, I think our role is to listen, hear them, validate what they say, what they need, how they feel, and then honor their wishes because they deserve that.

And that is love. Well, and 

Diane Hullet: I think I was going to ask, you know, as kind of a last question, what do you hope people gain from reading this [00:24:00] book? I think 

Gabby Jimenez: you’ve said it. Thank you. Yeah, I just don’t want them to walk away. I want them to honor people that they love in a beautiful, compassionate way. 

Diane Hullet: I think one of the things that I think is powerful about this book is that there are, you know, big, thick research based books about medical aid in dying, medical assistance in dying.

I’ve done podcasts with doctors who work with medical aid in dying. Very, very interesting. And those, those podcasts, those conversations and books, you know, they get more into the kind of. Well, what do you have to do to qualify? And, you know, why do doctors get involved with this? That kind of thing. But I think your book is so accessible for families and for individuals who are looking at this and maybe on one level, think Oh yeah, that’s a choice I want.

I mean, I think people say it kind of flippantly. I, you know, the number of people who say we treat our animals better than people. I want to be put down like my dog. People [00:25:00] say that very flippantly, but we’re really talking about people who really are at the end of their lives and feeling their autonomy and feeling their choice.

And if they live in a state where this is legal, Then they can choose this. And there are steps in place that make that a possibility. But I think your book really anchors some of the humanity in this choice that isn’t necessarily covered by the doctor or the conversation with the friend or the spouse.

And so I love that your book kind of sparks a different level of thinking about it for everyone involved. 

Gabby Jimenez: Thank you. I. I, there’s a lot of great information out there and I encourage people to, to research right to understand the facts and the laws and protocols. It’s very important that people know that.

I’m simply coming from the perspective of a person who has witnessed 1000 last breaths, and for the most part they’ve been beautiful, [00:26:00] but they haven’t all been beautiful, and I don’t think we should ever support suffering on any level. Especially for the people we love this book is written simply to go to the place of our heart centered space where we are reminded what matters most is that we honor the people that we love that we care for them well, and that when they take their last breath they know that they felt heard and supported and, and love, even though it was difficult.

Diane Hullet: Well, thanks so much, Gabby, I just, you know, we didn’t even say at the beginning that you’re. You know, a hospice nurse and you’ve been with over 100 people who’ve chosen medical aid and dying. We just skipped the qualifications. I got right into it. 

Gabby Jimenez: Well, it’s a juicy conversation. 

Diane Hullet: It is. It really is. So, you know, you can find out more about Gabby at her website, the hospice heart.

And also she’s on Facebook LinkedIn and all those good [00:27:00] places. And so you can learn more there and follow her to see kind of her inspiration on the ground observations and what, you know what I love about you, Gabby, I think you’re opinionated. And I love that. Like you don’t actually, you know, you don’t just present facts.

You really present based in your experience. You present opinions about what matters and what people can and can’t do. And I think that’s so important. We, we sometimes walk on eggshells trying to please everybody. And you’ve, you’ve got opinions. And it’s they’re, they’re beautiful opinions and they’re beautiful based in experiences that you can bring to people and share and widen this whole conversation about death and dying and end of life and how we go about doing this with autonomy and full hearts.


Gabby Jimenez: love that you say that. Yeah, I don’t mince words. I’m not a liar. So I’m going to tell you what you, you know, if you ask me a question, I’m going to tell you the truth. I had someone say, up there goes soapbox Sally again, because I, I do, I’m, I, I want to speak to the [00:28:00] world. Like I would love to do a Ted talk or teach at nursing school, the reality of life and death.

And, you know, I, I mean, I want to do big things because I have opinions. You know, yeah, I have an opinion but it, it really does come to the place of honoring human beings and helping to improve the way they are cared for. Yeah, in general, but when they die and when they grieve, 

Diane Hullet: especially those tender times.

Yes. Well, thanks so much, Gabby. You can, as I said, find out more about Gabby at the hospice heart. net and you can find her books on Amazon and her website or probably independent bookstores. I certainly hope so. They’ll be there eventually. And find out more about me at best life, best death. com. Thanks so much 

Gabby Jimenez: for listening.

Thank you, Diane.[00:29:00] 

Picture of Diane Hullet

Diane Hullet

End of Life Doula, Podcaster, and founder of Best Life Best Death.