Let’s Discuss Dying: ‘The Conversation’ About How My Dad Wants To Go

Charlie Ritz, 85, shares his wishes for the end of life as part of The Conversation Project. (George Hicks/WBUR)

My dad, Charlie Ritz, has given me countless gifts. One of the more recent ones is his willingness to talk openly about the fact that, though he’s healthy, when you’re 85 you’re not going to be around forever. He has made me cheat sheets of all the numbers and names I’ll need to handle his estate. He has signed his living will. And he has told me in so many words that he only wants to keep living if the quality of his life is good.

But it’s one thing to say that. We both know how hard it is to act when the time comes. Nearly 25 years ago, my mom was in a terrible car accident that left her in a coma and then a persistent vegetative state. After about six months, there was no real hope that she would ever wake up. She’d been a member of the Hemlock Society and had always been clear that she wouldn’t want to live like that. Years earlier, she’d even made my dad promise that if she asked him to bring her suicide pills, he would: “She touched my arm and said, ‘And if I can’t ask you, you’ll know,’” he said.

We knew. Even so, it took us more than a year after all hope was gone to finally bring ourselves to remove my mother’s feeding tube. My dad went to see her every day, and apologized to her for breaking their agreement.

So when I heard about The Conversation Project, I asked my dad if he’d be willing to tape “the conversation” with me, to help us and others make sure we’re as clear as possible about end-of-life choices. The project has just been launched by a group of media and medical professionals who want to help families and loved ones begin to talk about end-of-life care well in advance.

Dr. Jessica McCannon, a Massachusetts General Hospital critical-care physician and an advisor to The Conversation Project: “If patients and families can do this around their kitchen tables, and come to the hospital saying, ‘Look, I know my mom; this is what’s important to her,’ then we can really, calmly, make decisions that make sense.”

My talk with my dad, lightly edited, is below. Just to jump ahead, I have to admit that I kind of dreaded it. But I ended up finding it surprisingly comforting. I’d thought this was something I was doing for my dad, to get clear on his wishes. But in the process I learned that he was doing it for me. That he wanted to make sure I came away from his ending without guilt, knowing that though he didn’t want to die, he didn’t fear it.

jessica mccannon

Dr. Jessica McCannon, an advisor to The Conversation Project (George Hicks/WBUR)

I also learned some things I didn’t know. I learned that he’d very much like to have my children, who are 8 and 10, at his deathbed if they’re willing. If their beloved faces were the last thing he saw in this life, he said, that would be a good way to go.

And I learned that he and I just have very different attitudes toward death. I think death is followed by a great big nothing, and I’d rather have just about anything than nothing. At 85, he feels like he’s “had a life;” he only wants to stay longer on his own terms — a feeling that he tells me is hard for a younger person to imagine. True.

Readers, if this conversation leaves you with personal questions, you can go to The Conversation Project or post them in the comments below; Dr. McCannon has kindly agreed to respond. And now, our Conversation:

Carey: So this is a starter kit. It says it doesn’t answer every question but it helps you get your thoughts together and have the conversation with your loved ones. And you don’t have to complete it in one sitting. So it starts with a bunch of facts about how people don’t tend to communicate about their end-of-life wishes. Actually let’s begin with: So why are you willing to do this?

Charlie: I feel strongly about it and I just don’t mind airing my thoughts, I guess.

And I think for both of us, part of what makes us feel so strongly is our experience with Mum, that we saw how hard it can be for relatives to follow wishes.

And it’s important to me that you — when and if you have to help me in any way — that there’s no guilt involved. That my wishes are what’s involved here.

Well, and it’s important to me to know what your wishes are exactly. You’ve said them kind of generally but

Oh! I thought I was kind of specific! But okay, let’s take it from there.

Well, maybe I’m in denial. So here’s the first question in the Conversation Project kit for Step 2. Fill in this blank: Think about what you want for end of life care, and the question is: What matters to me is

__. In other words, what’s most important to you, what do you value most, what can you not imagine living without?

My ability to think. And be aware. And the thought of living with terrible pain is just not acceptable to me.

What if it’s not — this is me improvising — what if it’s not pain but it’s some other limitation like paralysis or something?

i don’t think that would be acceptable either.

‘The thing that worries me is that you could be more ready to go than I’m ready to let you go.’
Really?

I really don’t. I love life but — I don’t mind a few limitations, like my tennis, etcetera — but to be paralyzed — I just don’t feel is a way of life that I want to contemplate.

You mean fully paralyzed?

Yes, I thought that was what you were talking about.

Or I was thinking wheelchair or something like that.

I’m not sure. I guess the jury is still out on that one.

Okay, finish this sentence: What matters to me at the end of life is

___.

What matters to me at the end of life is, I’d like to have a few minutes to say goodbye to a few loved ones. But that’s about it. I am totally not afraid of death. I am afraid of suffering and I don’t want my loved ones to see me suffer.

That is totally clear to me. The trouble is, you never know whether it might be suffering that, if you just get through it, then things could be okay again.

Oh. Okay, I guess I wasn’t clear. When I said suffering, I meant — I think of something like pancreatic cancer, where to extend my life for a year and have suffering during that year, I have no desire for that. If it’s a question of suffering through some terrible surgery but if I could come out of it and be back on track again, then that’s a different story.

But so what if — so if there’s a chance, if it’s not clearly terminal — in other words, if there’s a chance that you could get better then you’re willing to go through a lot.

Yes.

So they have these 1 through 5 scales that are ‘Where I Stand’ scales: Use the scales below to figure out how you would want your end of life care to be. As a patient, 1 is ‘I only want to know the basics,’ 5 is ‘I want to know as much as I can.’

5.

Okay, and similarly, as a patient, 1 is ‘Ignorance is bliss,’ 5 is ‘I want to know how long I have to live.’

5.

This is easy. Same for me, by the way. Okay, as a patient, 1, ‘I want my doctors to do what they think is best’; 5, ‘I want to have a say in every decision.’

The Conversation between Charlie and Carey (George Hicks/WBUR)

5.

Yep. Me, too.

Okay, more of these scales. The scale is 1, ‘I want to live as long as possible no matter what,’ 5 is ‘Quality of life is more important to me than quantity.’

5.

Yeah, that was predictable. 1 is, ‘I’m worried that I won’t get enough care,’ 5 is, ‘I’m worried that I’ll get overly aggressive care.’

4.

I have a feeling you’ll expand on this one. 1 is ‘I wouldn’t mind being cared for in a nursing facility’ and 5 is ‘Living independently is a huge prioirty for me.’

Very much 5. I understand the need many people do have for help and community, nursing homes, etcetera, but independent living is very strong in my needs.

There again, if it were for a little while to get back, it would be okay?

Right — you didn’t say — a little while is completely different. Anything is tolerable for a little while. But the end of life is not a little while.

Right, like if it’s clearly the end. Okay, how involved do you want your loved ones to be? 1, ‘I want my loved ones to do exactly what I’ve said even if it makes them a little uncomfortable at first,’ all the way up to 5, ‘I want my loved ones to do what brings them peace even if it goes against what I’ve said.’

Well, I think you know the answer to that. 5. I have enough confidence we’re in the same ballpark.

I think so. The thing that worries me is that you could be more ready to go than I’m ready to let you go.

Give me an example.

Let’s say that — i mean my worst nightmare is that you have a stroke and it’s a bad stroke, and your quality of life is pretty crummy but you’re still you, you’re still there. You can still talk…

We’ve actually talked about that and I’ve mentioned, this is the one area that I’d feel helpless in, and yet that wouldn’t be acceptable to me. As much as I love you guys, just to sit there and look forward to Sunday when you come by, that’s not enough, no. i’ve seen enough people with strokes to know, I do not want that.

What if it weren’t quite that bad? What if it were, you know, wheelchair but pretty independent?

I guess i’d have to decide at the time. Right now that seems somewhat acceptable, and yet I can’t conceive of my being confined to a wheelchair as being acceptable.

Okay, another scale: 1, ‘When the time comes, I want to be alone,’ up to 5, ‘I want to be surrounded by my loved ones.’

5. i’d much prefer that. if it’s cool with them.

Even the kids?

I’d like it, but once again, it’d be up to them. i’d never demand that they be there.

But you would like it?

I would, very much so. If the last thing I saw in this life were Liliana and Tully, that would be a good way to go.

That would be a nice way to go. Okay, another scale: 1, ‘I don’t want my loved ones to know everything about my health,’ up to 5, ‘I’m comfortable with those close to me knowing everything about my health.’

i’m really comfortable. And honesty, as you know, has always been so important.

Okay, this is an open-ended question: What role do you want your loved ones to play? Do you think that your loved ones know what you want, or do you think they have no idea?

I think they know what I want and I feel very confident that they woud be there for my needs.

We would. Open-ended again, what do you feel are the three most important things that you want your friends, family and or doctors to understand about your wishes for end of life care?

That i’m not afraid to die. I know I repeat that a lot, and I’ve heard the saying that people say that but when they come close to it they run. But I’m pretty sure I know my feelings about that.

Why aren’t you afraid to die?

It’ll sound corny but part of it is Mum. If she — I’m sorry — if she were alive, I don’t think I’d make that statement.

Yes… What about doctors? Anything else they should know?

I have a primary care doctor that I have the world of confidence in. His ability and also his thoughts are — he understands my needs and is not at odds with them, I think.

Then there’s just a whole bunch of boxes…Okay, do you have any particular concerns about your health or the last phase of your life?

You mean right now? No, I feel not confident but hopeful that I can be around for quite a while. I feel fortunate in that area, in that everything seems to be behaving, notwithstanding my arthritis in my knees, but that’s livable.

Are there any disagreements or family tensions that you’re concerned about?

I think i’ll pass on that.

Are there circumstances that you would consider worse than death, for example, long-term need of a breathing machine or feeding tube, not being able to recognize your loved ones?

Yes, yes and yes. All of those are worse than death.

All of those? Even just a feeding tube?

Well, a feeding tube implies something. A feeding tube in itself — it means you’re confined and you’re confined for a reason that probably wouldn’t be acceptable.

Okay. Are there important milestones that you’d really like to be able to meet? Like the examples are: The birth of your grandchild, your 80th birthday — obviously you’re past both of those.

I’d love to see the grandchildren get into college but — we’ll see.

What kinds of aggressive treatment would you want or not want? Resuscitation if your heart stops, breathing machine, feeding tube.

None of the above.

Well, I mean you want to be resuscitated if your heart stops at this point!

Oh, oh yes, definitely. I thought you meant on a machine to keep it going forever? No, any aggressive methods would be okay if there’s a chance that it would bring me out of something
with this quality of life.

Right. When would it be okay to shift from a focus on curative care to a focus on comfort care alone?

When I’m told at best there’s a limited amount of time. And as i said before, just to stay alive isn’t enough. It has to be with some kind of quality. And if i could be made comfortable for a short time, give me a chance to maybe say some goodbyes, that would be fine. But just to prolong my life for the sake of prolonging it, if the conditions suck, that, to me, is not acceptable.

With Mum, it wasn’t that she had some kind of limited time ahead, it was the fact that it was clear that she could never get any better.

Once we knew that, then we brought her home. But I just felt — and maybe it was unrealistic, and near the end I know it was unrealistic, but knowing Mum being Mum, she wasn’t going to go that way.

But it was — I feel like the difficulty was that it was so hard to reach the point where we could accept that she really wasn’t going to get any better.

Well, you reached that point earlier than I did, I know you did.

Well, the doctors were saying it.

Well, but no one — I asked the doctor specifically: When they said they weren’t optimistic, I said: Are you telling me that she cannot come out of it? And they couldn’t say that.

Well, I guess my fear is, and what I’d like guidance on, what if there’s a situation like that with you?

No, if I were, God forbid, in a similar situation, right at the outset you can — if the doctors said –

that it’s highly unlikely?

– then pull the plug. That’s fine with me.

Like if they say it’s only a tiny percentage chance that you could recover…

How tiny?

That’s what I’m asking you!

I guess it would depend on what the doctor’s outlook was. If the doctor said, gee, there’s a chance, like that, that he could come out of it, that’s one thing. But if a doctor says it’s highly unlikely, there’s a slight chance, I would say let it go.

Right away?

Yes.

I would wait a little while.

It depends what the doctor means. If he says even waiting a little while won’t change anything…See, part of the reason too — I’m talking as an 85-year-old man, Mum was in her fiftes. So young.

Okay, last question I think: You don’t need much help with this but what affairs do you need to get in order or talk to your loved ones about?

Actually, i’m pretty up to date. I have a sense of order and I feel strongly about not leaving things in disarray. So things are pretty much in order.

Yes, in fact there’s a whole little instruction sheet for me.

Three sheets.

Well, it’s awful to talk about this stuff, but it’s a good thing to do…

Well, I don’t feel it’s awful to talk about it. I think it’s healthier. Different times I’ve wanted to go over my instructions and you always say, another time, and your sister does too. So I think I have a healthier outlook on that than my children do.

Well, maybe it’s easier for you to contemplate dying than for us to contemplate your dying.

Okay, I’m sure that’s true. But 85 — I lost parents at 78 and 82, which I felt was much too young. I’m 85, and so far going strong. We’ll see. But death — I’ve had a life. There have been some tough things but there have been some wonderful things in my life, and if I have to say goodbye now, I’ll say goodbye. I’m not going to sit and cry about it.

No, we will!

That I can’t help, but there again, the important thing, that I’m sure you do know, is how much pleasure you’ve brought me. There’s been a lot, and I’m thankful for that.

Thanks, Dad….

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  • http://www.facebook.com/MargaritaFriedman Margarita Friedman

    My mom died of a massive brain stroke for the anguish she had regarding a legal procedure. He had tubes all over and her skin was black with marks. It was horrible. My mother youngest daughter would not let us disconnect her. In intensive care we could only see her 5 minutes a day each, creating great conflict if anyone took a minute more. I feel a immense guilt for not demanding having her agony stopped for fear of being again accused by that woman of trying to commit murder as when I requested not to resuscitate our father who had cancer in all his body, his lungs were connected to a pipe to drain the liquid and he was pure bones.

  • Bob Johnson

    One of my very closest, long time friends recently had a massive stroke during a heart by pass surgery that has left him severely impaired. It’s been over a year now and his quality of life is not going to get any better. He’s 65. I visit him as much as I can tolerate. The truth is, it is very painful to see him like that and I contemplate what I would want if I were in his situation. I have come to no conclusions, but the Conversation Project reminds me of the importance of facing tough choices in end of life situations. Thanks for sharing.

  • Joyce Boiardi

    Jane and I both worked for Charlie at Light and Lovely. He was caring and sharing then. His heart was big. Thank you Charlie for sharing this with all of us. I wish my dad had had this conversation with us. It would have made it much easier to let go. And not feel guilt for not knowing his true wishes. My mom has had it with us and it is far more comforting to know her true wishes. Hopefully your story will encourage the dialog to be open so there are no questions.

  • Jane Hardin

    I used to work for Charlie many years ago at Light and Lovely fitness salon in Wellesley. He was a true peach and I wish him the bet. This story really moved me!
    Jane Harin

  • Elizabeth Treister

    What a beautiful discussion by my two cousins. I believe things are very clear about Charlie’s end of life issues. It was honestly and beautifully presented by both Carey and Charlie.

    I tried to discuss things with both of my parents years ago and at first, my father refused and left the room. My mother thought it was a good idea. She convinced my dad, to consider what I requested, but he would only provide a list of important accounts and contact people. He would not discuss his end of life issues. My mom and I went to the funeral home, to select their caskets and pre-pay their funeral costs, which was very difficult. It was good that we did, because my father died shortly thereafter. It made it easier for my mom and me, with fewer arrangements to make when he died.

    I knew my mother’s end of life wishes which we discussed after my father died, but I initiated the conversation last January and she refined her desires. It was a relief that we updated things, because she passed away three months later.

    Although these discussions are very difficult, they are so important for all loved ones involved.

    What a wonderful project.

  • disAbled and Valued

    thank you, very moving! it seems for people not currently disAbled, they think the worst thing wld be to require help w/ daily activities. That’s the way media has portrayed it, and it has penetrated society’s way of viewing ppl w/disAbilities. But, our lives are worth living, very much so! Ppl need to realize that.

  • Sandy Lerner

    I am so happy Eva and Larry shared with me this beautiful and poignant interview between a father and daughter. These are the things that make life so very special and it’s clear that is what your family possesses. You have made me realize that my daughters and I can have this, too!

  • noel

    My father and I had the conversation six months before his death and more than two decades ago. It was not much different when my mother died five decades ago after being ill for 15 years. It is those poignant times when we share our thoughts with those we love and it is as clear to me today, at age 70, as it was so long ago. Thank you for sharing this valuable lesson with us.

  • mtnrunr

    We need more artilcles on this subject. I fed my father through his feeding tube as he was slowly dying from cancer. I also administered morphine on a regular basis. We never had the conversation (him being a religious man). But one night he awoke and was rummaging through the house for his deer rifle which I had hidden. That should have told me everything. Still I said nothing and did nothing.

    When I finally took him to the Catholic hospice (we were Lutheran) he died an agonizing death by slow suffocation. I blame myself. It haunts me.

    We should have rented an RV and took a long relaxing trip to Oregon, where he could have died in peace. Our state hospice nurse said later that I could have administered an overdose of morphine and no one would have said anything.

    • concerned in MA

      so: no need for #assistedsuicide law- that would make heirs and nursing staff commit euthanasia legally. Say no to Ballot Question 2 in Massachusetts, please!

  • Eva Adler

    Hello from 1105! We just watched the interview on line and loved your star turn. There were touching moments along with essential information to benefit all of us. And you looked good – both you and Carey sounded great! Your fans, Marge, Eva, and Larry

  • http://twitter.com/DrDickSexAdvce Richard Wagner

    What a marvelous story! Thank you so much for challenging us to break open this important conversation. Can I share with you another resource? It’s the newly published — The Amateur’s Guide To Death and Dying; Enhancing the End of Life.

    The book is designed to help friends and family continue the discussion about end of life concerns. I can safely say that it is fundamentally different in style and scope from everything else I’ve ever read on the topic.

    We are notorious for ignoring and denying death; we keep death out of sight and out of mind, postponing any serious considerations until death comes knocking at our door. This approach inevitably leaves us unprepared and frightened when we are faced with our own mortality. We seldom get around to asking ourselves seriously; “Will my death be good? Will it be wise? Will it matter?”
    Thousands of women and men will receive a terminal prognosis this year. And for most, what follows is a nightmare of loneliness and passivity. Because of our society’s enormous death taboo, few opportunities exist for sick, elder, and dying people to connect with others similarly challenged in a purposeful, life-affirming way. Instead of being encouraged to take a lead role in orchestrating their finales, they are expected to be unobtrusive, dependent on the kindness of others, and wait patient-ly for the curtain to fall. No wonder we feel bitterness when we discover that the marginal status we assigned to death in our healthy days is what we find for ourselves in our dying days.
    Let’s change the conversation to one that is more life-affirming.

    • Jessica McCannon

      Richard – thanks for sharing this resource. I just read a bit more about the book on your website & look forward to getting more familiar with it! It is truly exciting that there are so many people, groups, etc. thinking about this… I think we are reaching the tipping point. Will share with the rest of The Conversation Project crew.

      • http://twitter.com/DrDickSexAdvce Richard Wagner

        thank you, Jessica. perhaps there’s an opportunity to collaborate. you can reach me through my site: http://theamateursguide.com

  • http://www.facebook.com/people/Toby-Nicholas-Saunders/46709144 Toby Nicholas Saunders

    The only argument against euthanasia/mercy-killing is mythologically based, e.g. Christian belief, Muslim belief or what ever religious view. Letting someone die how they choose is the most basic of rights; it’s highly unethical to stop mercy killings. It’s upsetting that religions are causing so much pain & horror: it’s time to stop being respectful about religious beliefs which are causing suffering & preventing wellness… it’s time to be frank about it.

  • Sarah

    Carey and Charlie – This is SUCH an intimate conversation. Thank you so much for sharing it with us. You have shown that while this is a scary process for many of us to begin, it can be an incredibly rewarding one that strengthens the connective tissues of family and relationships. And it is a very real gift to the survivors. The earlier we can start this conversation, especially if we can have it before a time of crisis, the more helpful it is to all concerned.

  • Ralph Gilbert

    Charlie, you were very clear about you wishes. This must come from your strong sense of self worth and your ability to be introspective. Carey, you were very brave to have embarked on this project. Your work is superb. Congratulations to both of you.
    As for me, I want to be kept alive at all costs until my money runs out. If there’s any left I’m taking it with me.
    Love,
    Ralph

    • careyg

      Thank you, Ralph, and you guys are such an interesting contrast — proof that there’s no right answer, just a deeply personal choice. About the money, though, what was that old Jewish joke about the mourner who jumps into the coffin, grabs the cash and leaves a check?? So apropos — wish I could remember!

  • Paula Gilbert

    So many times Charlie and I have talked about this. We are usually right together in outlook. But this was much more poignant listening to a father and daughter talking. The Conversation Project is a real tool to be used and I am so glad that you have brought it into my focus. Thanks.

  • Nel

    Thank you for this and The Conversation Project. It is so needed and an excellent template to begin and configure conversations- thank you Charlie and Carey for your honesty and vulnerability- I am off to forward the link to my mother who is forever wanting to have this conversation with her reluctant children- and while I know some of the answers to these questions, some remain elusive- I think it is a finer line, sometimes, between acceptable quality of life and unacceptable and hard to predict where you would fall on it when the time comes. I think I will also tape to transcribe the important parts b/c I can imagine having a squirrelly memory for details when emotions run high and it would be good to have references.

    • Jessica McCannon

      Nel – I just wanted to say that I think your idea about recording/transcribing your conversation is a great idea!

  • Kristen Davis

    Many thanks for sharing this conversation with us!!!

  • http://www.facebook.com/jen.holmgren Jen Holmgren

    Charlie and Carey – Thank you very, very much for sharing this most personal issue with us. It is so important for families to dialogue about this emotionally-charged subject. Understanding that death comes to us all, and listening to our loved ones, is a hurdle many Americans have yet been unable to jump. Hopefully, in the near future, stories like yours in The Conversation Project will eliminate some of the uncertainty, fear, and shock that so often come with the end of life.