What a good death looked like [PODCAST]

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“He needed to be taken to the hospital to be pronounced, and he was put on a gurney. One frequently mouthed wish was to be taken from his home feet first. I stood beside him as he was placed in the ambulance. His soft, sweet smile told me everything I needed to know. His wishes had been honored, and we had done it together.”

Yvonne Caputo is a writer and author of Dying With Dad: Tough Talks for Easier Endings.

She shares her story and discusses her KevinMD article, “What a good death looked like.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/follow. Today on the show, we have Yvonne Caputo. She’s the author of the book Dying With Dad: Tough Talks for Easier Endings. Her KevinMD article is titled “What a good death looked like.” Yvonne, welcome to the show.

Yvonne Caputo: Thanks. It’s so good to be here.

Kevin Pho: So we’ll talk about your book and your KevinMD article in a little bit. Just first off, briefly share your story and journey to where you are today.

Yvonne Caputo: Well, I really believe that my entire life was a journey to writing that book. I started out as a teacher and had kids falling apart emotionally on me, so I went back and got a second master’s degree in clinical psychology. I met and married the love of my life, moved, and couldn’t find a teaching position. So with the clinical psych degree, I was able to do employee assistance work, and that landed me as the vice president of human resources in a retirement community. It was in this retirement community that I began to see death and dying from a whole new perspective.

Kevin Pho: So tell us a little bit about that perspective that you learned about by working in that retirement community. What kind of stories did you see? What kind of things opened your eyes?

Yvonne Caputo: Well, our organization had an ethics committee, and I was seated on that committee. A case came before us where a daughter wanted to not have specific things done to her mother, because her mother had an advance directive. The problem was that the advance directive was written in another state, and the state of Pennsylvania did not recognize quality of life as a reason to deny treatment. So it ended up in our discussion that we felt we needed legal advice on this one. The case went to court, and the court provided two surrogates. The first surrogate was to allow the whirlpool baths and the antibiotics. The second surrogate was then to be the daughter, where she could say, “No, I don’t want my mother’s foot amputated.”

So that gave me a step back to think about my father, who was alone now, and his health was declining, and what would happen if some kind of circumstance happened to him in the same way that it happened to this woman. So I made an appointment for Dad and me to go see an attorney, and together we drew up an advance directive. In that sense, I knew what medical treatment Dad wanted, what he didn’t want, and under what circumstances.

However, as a person in a retirement community, maybe three or four years later I was introduced to a document called the Five Wishes. The Five Wishes is an advance directive with all kinds of heart, and when I saw the other questions that it addressed that hadn’t been addressed with Dad, I made that seven-hour journey back across the state to see him. At the time, he was in the hospital, so I sat down beside him, and question by question, we got the document done.

What makes Five Wishes different is that it asks questions like: How do you want to be remembered? What do you want your family to know? What do you want as a funeral? Do you want to be cremated, or do you want to be buried? So Dad and I just talked about all of these things, and the document was signed and witnessed there in the hospital. Then it took its place on the side of Dad’s refrigerator, because calling EMTs was becoming even more frequent with Dad.

He was in the hospital in 2009, and it was Christmastime, and I went back to see him. The social worker asked me, “When can we send your dad home?” And I said, “You can send him home when he’s ready.” So we traveled back across the state, and don’t I get a call from my father. He’s angry, really angry: “What did you tell them? To send me home?” I said, “That’s not what I said.” In that conversation, Dad said to me, “Yvonne, can you come home? I’m scared.” And I said to him, “I will be home sometime in the afternoon. I’ll leave tomorrow morning.”

So I found somebody to come and stay with Dad, and I was home no more than two hours when I found him face down beside the bed. Not knowing what kind of condition he was really in, we called the EMTs. They came, and one of them said to me, “This doesn’t look good.” I went and grabbed the Five Wishes, and the EMT said, “These are too old.” I knew Dad had a DNR on his hospital chart, so I immediately called the hospital and said, “Please have the DNR in the emergency room. They’re bringing Dad in.” No more than a minute later, the ER doctor called and told the EMTs to stop working on Dad.

I lay down beside him. I told him I loved him. I told him I’d miss him. I said the Lord’s Prayer in his ear, because that was the glue in our family, and he passed. Something that’s important for your listeners to hear is that my dad’s wish, his huge wish, was to be taken feet first out of his own home, and that’s exactly what happened. As they were putting Dad in the ambulance to take him to the hospital to be pronounced, the look on his face was so sweet. There was this smile that said, “I’m where I want to be. It happened the way I wanted it to happen.” And reflecting on it myself, what a gift, what a gift to be able to love my father that closely, to stand up for him in the end. So that’s my journey.

Kevin Pho: You talk more about that in your KevinMD article titled “What a good death looked like.” You mentioned the Five Wishes. Now talk more about how you came across that and the background of the Five Wishes.

Yvonne Caputo: I went to our director of operations’ office, and she was really, really excited. She had just come back from a LeadingAge conference, and LeadingAge is the organization that really looks at retirement communities. She pulled out this blue-and-white pamphlet, fairly big, 8 by 11, and she said, “This is incredible.” Then she talked about it in the same way that I did, the kinds of things that it covered that were in an advance directive. Well, when I read through it, I said, “I need to do this with Dad. Here, things are answered that I had no idea about.”

So when I did it with Dad: Dad was Catholic. He wanted a high Mass for his funeral. He wanted his children and grandchildren to choose the readings. He wanted my husband, who has a glorious tenor voice, to sing. He also told me I was going to say so. All of these neat little things, so that when we sat down with the priest, my brother said, “Well, I really don’t know what happens for a funeral.” And I said, “Michael, this is what Dad wants,” and I repeated what I just said to you. I would not have known all of those little intricacies if it hadn’t been for kind of stumbling on the Five Wishes.

Kevin Pho: Now, as you reflect on this story, and it sounds like everything went as well as it could, is there anything that you would have done differently?

Yvonne Caputo: No. And that in and of itself is why I don’t grieve the loss of my father in the way I grieve the loss of others. My brother died in the car accident. My mother died alone in the hospital. We didn’t know what they wanted. We had no idea, because the discussion had never been had.

Dying With Dad is my second book. My first book is Flying With Dad, and in it I talk about that end-of-life stuff with Dad as well. Readers of my first book, that’s what they asked me about: “How could you do that? What gave you the courage? Didn’t you want him to stay alive? Didn’t you want to push for that?” The reality was that I didn’t realize, in the writing of the first book, that that was the topic that would so engage people. So that was what motivated me to do the second book, because what I really wish for is that parents have discussions with children and children have discussions with parents.

The first chapter of my second book is “The Elephant in the Living Room.” Everybody knows the elephant’s there. We’re not going to get out of here. This is not a long, long-term thing. So the reality is, it’s there, so let’s talk about it. Let’s really have these meaningful conversations so that when the end comes, if at all possible, it can happen for the loved one in the way that they really would like it to happen.

Kevin Pho: You mentioned your second book is titled Dying With Dad: Tough Talks for Easier Endings. I have a lot of clinicians who read KevinMD and, of course, listen to this podcast, and we could all do a better job when it comes to advance directives. Now, for those after reading your book, what are some of your main messages to clinicians on how they can better improve discussions regarding end-of-life care?

Yvonne Caputo: To think about it when they’re working with patients, that the end is near or the end could be near, and that they bring up the subject: “If something were to happen, if you get very close to the end, what do you want? What would you like to have?” And then just sit back and listen.

I found that to be very true in the retirement community. I got very close to some of the elderly residents, and so many times they would say to me, in the quiet of the moment, “Yvonne, I want to go.” My response would be, “Tell me, what is it? What do you think about?” And I would just sit back and let them verbalize it. So many times, even in a nursing wing, the employees would say, “Oh, don’t say that. We want you around.”

And knowing the difference between somebody who’s talking about suicide and just an end result to their life, yes, you have to pay attention to that. But for the most part, all of the people that I talked to just wanted to talk about it. Their friends had gone, their ability to do things had gone, the quality of life had gone, and they were just ready. So having somebody to affirm their readiness would be something that I wish clinicians were better at.

Kevin Pho: We’re talking to Yvonne Caputo. She’s the author of the book Dying With Dad: Tough Talks for Easier Endings. Her KevinMD article is titled “What a good death looked like.” Yvonne, you mentioned the Five Wishes. What kind of resources can listeners go to to find out more about that?

Yvonne Caputo: They can Google the Five Wishes. It’s $5. It comes in this 8 1/2-by-11, blue-and-white pamphlet. However, they’ve now upgraded their system. I did my Five Wishes, and I did it online, so I was able to type everything in, and then I could print out the document. So it’s that simple. It’s to go to the Five Wishes organization. They give help in how to bring up the discussion. They’re very, very thorough. And the Five Wishes, as I understand it, is legal in 42 states.

Kevin Pho: And my final question: What are some of your take-home messages that you want to leave with the KevinMD audience?

Yvonne Caputo: It’s what I said before, and that’s to open up the discussion about death and dying. If you’re a child and your parent brings it up, sit back and listen. See what they have to say. If you’re a parent, bring it up to your child. Even have the document, have it filled out, so that you can say, “This is what I want.” To have those open discussions is really what I would like to see for everyone. Because when I look back on Dad’s death, would I have him back in a heartbeat? You betcha. Are there 50 million questions that I would ask him? Absolutely. But there is this sacred glory because of being able to give that gift to my dad, so I would love that experience for anyone who reads the book.

Kevin Pho: Yvonne, thank you so much for sharing your story, time, and insight, and thanks again for being on the show.

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