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