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We decided not to tell the kids. Marlon knew that once our three daughters understood that their mother had been given one thousand days to live, they'd start counting. They would not be able to enjoy school friends, their teams for birthday parties. They'd be watching too closely how she looked, moved, acted eight or didn't. Marla wanted her daughters to stay children, unburdened,
confident that tomorrow would look like yesterday. We threw everything at her, disease lectures, research, involvement in cancer organizations, yoga, meditation, teas and soups. She even went to a storefront heuer who lit incense, read her palm, and led her in prayer. He declared her a badass because of her restorative powers. It was a nickname that I promoted with all of her doctors and nurses because it was not only hopeful but true. She didn't just by time, she cheated it,
squeeze months and years out of it. Marla was a statistical frea conaboration and outlier. One thousand days landed firmly in our rearview mirror.
That's John Melman. John is a New York City based real estate executive, and this is a story of a devoted husband and wife making a painful choice to keep a shared secret from their children, a complex and challenging decision made in the name of love. I'm Danny Shapiro and this is a special bonus episode of Family Secrets. Joining me to talk about a show we recorded way back in season two of Family Secrets is the wise
and thoughtful doctor Ruth Fayden. Ruth is the founder of the Johns Hopkins Berman Institute of Bioethics and the Philip Franklin Waggly Professor of Biomedical Ethics at Johns Hopkins. Today, we'll be discussing The Loving Choice. I hope you'll go back to season two in the feed and listen to this heart wrenching and profoundly moving human story. Ruth, thank you so much for joining me in conversation on Family Secrets.
Of course, my pleasure.
So the episode that I asked you to listen to, given your area of expertise as a bioethicist, is The Loving Choice. And it's one of those episodes that has continued to haunt me even after I've now recorded ninety of these episodes.
Oh my goodness.
Yeah, I'd like to start with what most stood out for you as you were listening.
Well, I think what most stood out for me was the intensity of this woman's love for her children. I just think it's overwhelming what Marla did in order to ensure that her children have as regular childhood and adolescence.
As they could possibly have. That's pretty stunning. Yeah.
The Loving Choice the title of the episode, which comes from John Melman's description of what he and his wife Marla chose to do, the decision that they made to keep the extent of her illness from their daughters. When I was preparing to record the initial episode, if I remember thinking about all the different reasons why a choice like that might be made, and I was remembering something that you said to me when you and I first met a number of years ago, And it's an ethical term,
which was retrospective moral judgment. You know, in stories like these, where illnesses are kept either from the person themselves or from children, they seem more common back a generation or two, when you know, people really believed wholeheartedly that it was just better not to know, that it was better to keep secrets. And I mean that's less that's less true today from an ethical perspective, where does that reside?
Well, I want to draw and a really sharp distinction between professional medical ethics and personal interpersonal ethics. So you're absolutely correct that the era in which it was thought best for physicians to keep diagnoses from patients it has
long left us. It's now considered completely inappropriate for doctors and nurses to make judgments about what patients should know about their own health, and even in context in which they have to deliver devastating news, they know they have an obligation to do so, and although it can often be wrenching and sometimes deeply damaging, there really is no other alternative except to inform the person about the status of their health so that they can make whatever decisions
they want to make about how they want to live their lives in the face of whatever diagnosis they've received. It's a separate set of issues, whether under what conditions, into whom the person who's received the devastating diagnosis, or at least the challenging diagnosis which it was from Marlin in the beginning, it sounds like from John's telling that she refused to accept that it was devastating for a very long time, and she turned out to be right.
Right.
But it's a totally separate kind of ethics question what people owe to those they love about their diagnosis right, and that becomes deeply personal. Now it is much a matter of in the case of children, what is in the children's best interest to know and when than it is of anything else. And arguably nobody was better positioned than Marla and John to make that call. It sounds like they didn't deny Marla's illness or the fact that she had the diagnosis of breast cancer. They shared part
of the story. I think you said at one point in the episode.
It was partial truths that they gave the girls.
Right, and it seems to me an eminently reasonable decision. Now, when you raise the issue of retrospective moral judgment, I certainly don't feel positioned to look back at Marla and John's story and in any sense criticized them for what they decided to share and what they chose not to share, and when they decided to share in the end that
there really was no hope. It's heartbreaking. I think the mistake would be to generalize from their experience to what parents ought to do in all cases, in all families. It sounds, from John's telling, as if the strategy that they adopted was, first of all, the only thing that was possible for Marla, that's how she wanted to live her life, and also I think actually worked well for
her girls. It sounds as if they did well. I mean, by John's telling, they had a pretty successful slash normal adolescence. The youngest one didn't quite make it to college before her mom passed away, but the other two did, And I don't think they ever questioned, right the intensity of their mother's love for them or her hopes for their future. But whether this would work in another family, with other
children and other parents, I don't think you can go there. So, in keeping with the theme of the podcast, what works as a secret for some people would be a disaster to keep secret in other families. It seems to have worked here.
I hope it.
Yeah, that's such an important and interesting distinction, the idea that in any given family, you're dealing with a constellation of human beings who have very specific needs and psychologies and histories, and that these kinds of choices are so deeply deeply personal. The way that John describes her profound need for her kids to see her living normally and
to show them strength and resilience. And I remember when I interviewed John, and you know, I don't I've done so many of these interviews at this point that I often don't remember, you know, details or where I was or exactly at what point it was in my own life.
But I do remember this one because I interviewed John in person in New York City because I was living there because my own husband was sick with cancer, and you know, we were very much in the phase that Marla so did not want to be in of people bringing lasagnas and castle roles and the thing, the thing that John talked about, you know, with with a sense of humor. But she didn't want, as he said, the pity, and she didn't want the whispers, and she wanted her
daughters to be protected from that. And I, I really I felt for them so much, and you know, for him in recounting the story so much, because there is something that can happen when normalcy suddenly or you know the rest of the world is kind of you know, just bopping along, and and suddenly we are on the other side of that divide that separates the lucky from the unlucky, or the well from the unwell.
Absolutely, and I want to underscore because there is a risk as we talk about this, for other people listening to think this is the only way to handle a devastating diagnosis with your children, and I'm failing because I can't do it. So there's that worry I have to Marla was who she was, right, the kind of person
with a kind of strength. There's also a different kind of strength that manifests itself in bringing your especially as they got older, children along with you, and thankfully I have not had to do that with my own kids. I don't know which way I would play it, but I wouldn't want to judge someone who just says, at a certain point, I really think it's I can't hide it anymore. She reached that point only at the very
end Marla did, right. I would think a lot of people reach it sooner, right where they just say, I can't hide this anymore. I'm exhausted, I feel shitty. I can't be the upbeat, perky parent I've always been. I can't mother them the way I would like to, and I don't want them to suspect or think that it's about them, and so I need to tell them why. I need to tell them why I am not the
same kind of ammy what six months ago or whenever? Right, it sounds like by John's telling that Marlow was able to do this for years, right, somehow was able for many years to conduct yourself in ways that never raised worries among her children. They knew she had a disease and she was being treated, and that was it.
Right.
It's pretty amazing. But not everybody can do this, and it's not necessarily good for every family. I guess if I had a message, it would be that there's a related thing too that I wanted to bring up as I was listening to talk about your own experience with your husband very briefly just back there, and that is there is this a little bit, and I think John references it. There's a kind of voyeurism that is actually troubling,
if not outright offensive. Right, when people find out that someone has a serious illness, oh, they can't wait to contribute to the meal train, and they want to come visit and they want to know the details of the illness and how is it going and how is the treatment going in now? It's not necessarily anybody's business, and a part of it is this I want to know because I want to make sure that I can kind of find things in my own life that will make me feel better that this is not going to happen
to me. Right, So you know, in this case less likely with the b r c A one and two gene. But how can I reassure myself that this is happening to Marla, but it's not going to happen to me.
It's well meaning people who don't realize that that is what they're doing. But it seems like it's a kind of human impulse because it's so pervasive that you know, that feeling of you know, well, was there a family history or did this person smoke? Or finding an narrative that will draw a bright line between this unfortunate and terrible and tragic experience and you know, my life and why that's not going to happen to me exactly.
And that's exhausting for the person who's got the illness. It's like, excuse me, right, I'm dealing with this. It's hard enough. I don't need you prying into the details. Of the origins of my illness or my prognosis or any number of things. I've gone through this with friends, you know, over the years, where let's say, you know, you're the trusted friend that knows the details, and then all these other people who want to know, So, what.
Did she tell you?
Why?
Not of your business?
Honestly, right, And I think some of that sounds like some of that was operating for Marla.
And fra John.
They did not want to be caught up in that dynamic, and they certainly didn't want their kids to be caught up in that kind of dynamic either, and so they you know, they chose the path they chose, and it's it's tragic, like in the context of you know, Marla's untimely death to say it worked for them, but it worked for that.
It should also be said for people listening to us who haven't gone back and listened to that episode yet that Marla was someone who, after having had her ovaries removed after six rounds of chemotherapy after a bilateral mass ectomy, was back out running four or five days a week,
and that was after her first diagnosis. Considered that a speed bump, you know, and going on you know, adventurous sports driven vacations, and you know, just that was the kind of particular superhuman quality that she had and that John uh So clearly really loved in her.
Yeah, you've said it so well. And I think lots of people after that first diagnosis, especially after she's done everything she can to prevent a recurrence, might reach the same conclusion about how to handle it with their kids.
They're hoping it's not going to come back. There's no reason to scare the kids into thinking it might come back, right, the kids are younger then also when this begins, but when it does recur and when her prognosis becomes more dire, some people would at that point say they're older, right,
and it's time to bring them in. And yeah, I was thinking about this as I was listening to the episode, and I appreciate that not all your readers would have listened the way I did, which was just before a conversation to thinking about to some extent, this is outside the realm of ethics and more in the realm of family therapy and family support. It seems so critical. Now, maybe this couple didn't need it, but lots of couples
need help. Understandably trying to figure out for their families with their children at whatever ages the children are at the time when the really bad diagnosis comes through, So, what are the options? How should we play this right with our five year old or a fifteen year old. And so it's in part a matter.
Of sort of personal ethics. It's the sort of ethics.
Of your family, how you've conducted your family until then. And it's also i think largely a parent or parents in this case, trying to figure out what's in the best interests of our kids in this family at this point in their lives.
Yeah.
No, that's so well put. And it also strikes me that it goes against the grain of what it is to be a parent to have to do or to contemplate telling your child something so devastating. All we want to do is protect our children, and it brings you right up to the edge of the awareness that, of course we can't. You know, we can't protect them from bad breakups. We can't protect them from a divorce if we get divorce. We can't protect them from our own mortality.
We can't protect them from their mortality. We can't protect them from the state of the world, and to have to make that choice, whatever that choice is to tell to not tell, whatever it is is coming from such a primal place, no matter how we might you know, intellectualize it or figure out, you know. I think John used the word script a couple of times.
Yes, one of the things I kept thinking about when I was listening to John.
Realizing that the whole discussion.
Conversation that the two of you had was around how they only shared part of the truth with their girls until the very end. I kept wondering about their parents. So again, it's deeply personal. You know, what's your relationship with your parents, your in laws, right, how close are you to them? But I would imagine you have a different relationship with obviously your parents than you do to
your children, and all together different moral obligations. You were saying, how probably the most defining characteristic of parenting, which we all fail at, is the impulse to protect their children, to make their lives perfect, right, to try to keep them from never having to eat alone in the lunch room, right or never you're in cypergollying, or never be excluded from the birthday party, or not have anybody to go
to homecoming with or whatever. We want to keep all of those kind of minor, but at the time, you know, very difficult, challenging experiences for our kids. To a middlemum, we want to fix it and we certainly don't want to have to tell our kids something as awful as they're about to lose us, right, no matter how old they are, but especially when they're school aged. But with parents, it's a different kind of relationship. Their job still is
to protect you. And even though you're a grown up and an adult and you have your own kids, and again, every family is different. Every relationship between an adult child and their parents or their in laws is different. That I could see parents being deeply hurt, which is something else you need to take account of, right, deeply hurt if the diagnosis is with help from them. And I have no idea what they did, obviously what John and Marla did with her. I guess they each have one
surviving parent at that point, or siblings. But I only bring that up to say it's not only that each family is different, it's also that the different relationships family. So parent to child is different than sibling to sibling, spouse to spouse, partner to partner, The relationship between the adult person and her parents. They're all very different dynamics.
The one between the parent and the child, especially when you're still talking about school age child is so defined by an obligation to protect them and to advance their own interests. Right, that's what you're there for. You're trying to make every single decision based on what's best for them. And there's no question that Marla and John that's what they were doing, right. They were determining that this is
what is best for their kids. Somebody else can say, this is not what's going to be best for my kid. When my kid HiT's sixteen or whatever age, it's just not going to be good for them because I'm not going to be myself and they need to know why.
Except Marlow seems that it seems that she was able to be herself for a very long time, way longer than she was given to live. When she receives her diagnosis that her cancer had metastasized.
Yeah a thousand days.
Yeah, a thousand days, and then she lived like something like eight or nine years.
It's stunning. Right, So again I keep like wanting to have or this one thing. Oh, it's not a failing if you can't live your life like marlat did. She had a certain character and constitution and discipline, maybe in.
Part because she was always athlete.
And she know exactly how she wanted things to go for her girls, and she could do it well.
It's interesting because the whole, the whole family. I mean, that only works if it if it works in a whole family, right, And and it struck me that John and Marla were very committed to the same kind of you know, his word was lifestyle, and you know, the same kind of child rearing and the and the same hopes, particular hopes for the kind of track that you know,
each of their daughters would be on. And they lived in a very sort of pressure cooker kind of suburban community that I know, well, Scarsdale and that whole area of you know, Westchester, you know, bedroom community of New York City, very high octane and you know, not every
kid is high octane. And John and Marla had three daughters, all of whom were high octane, by which I mean, you know, really sort of superachievers and incredibly athletic and inherited Marla's athleticism and you know, very good students and you know, all three of them played Division I sports at create schools. You know, this is no small thing, and I think that those shared values were shared, it seems, by the whole family.
We'll be right back.
I want to go back to the language of retrospective moral judgment. So that term is very important in thinking about the ethics of something that has occurred in the past, and it addresses the question of whether all more is relative, or whether, in fact there is some enduring features of the moral life that can be used to think about conduct in the past as well as in the present.
I think in the case of interpersonal decisions like this, family decisions deeply unique to the person, the partners, the children, that it's a very different dynamic. And we're talking about the kinds of ethics that show up in the ethicistem the New York Times. Right, it's sort of you know, my girlfriend is lying to me, what should I do?
Kind of thing here.
I just would caution everybody both to avoid judging Marla and John as moral giants, right who managed to do what most of us couldn't do, or as morally flawed persons for failing to share the reality of Marla's condition with their children as the children got older and could have integrated it. I don't think this is a context in which we can look at their lives and draw any conclusions about the rightness or wrongness of what they did for their family, or any inferences for what we
should be doing in our own families. If tragedy like this strikes while we still are taking care of kids, I just don't think it works that way here. Now. When I say that, I don't mean that you can't judge or shouldn't judge parental behavior. In many cases, you can look at, you know, the way a parent is treating a child, and it's totally appropriate. That is unconscionable, right, that's emotional abuse. God forbid, that's physical abuse.
Right.
No one should parents a child in this way. But we have to be really circumspect because we don't know right what is going on. I mean, I'm sure that I'm not alone in having been, say in an airport lounge meeting area and seeing some mother yell at their kid and cringe, you know, and want to go in and rescue that child, and you have to hold back because you don't have any authority, any moral authority to intervene unless you really thought the child was, you know,
at serious risk of serious harm. So you know, Danny, one of the risks with keeping secrets, and you know this probably better than anyone is you are my expert on all thanks secrets, is that you are often less successful in keeping the secret than you think. More and the people who love you, especially in the context of a close, clearly devoted family, is that the girls at
some point started to get suspicious or concerned. And what I couldn't tell in listening to John was whether that was ever a really big problem, either for him and
Marla or for any of their daughters. But there is that caution, right that, even though you may think that you're doing a great job keeping this secret and revealing only the parts that you think are compatible with your children having a let's just call it a normal adolescence, kids are incredibly emotionally intuitive in many cases, not all kids,
but many kids, and especially about their parents. So whether it's a marriage that isn't going well or someone's health isn't going well, you just have to look out for the possibility that the children may be suspecting more than you think, and then that raises trust issues and confidence
issues for the children and for the relationship. Now, I have no way of knowing from your conversation with John whether that was ever a serious concern, but I'm guessing that if you were to talk to a family therapist about how to handle a very bad diagnosis of a mother or father with adolescent children in the house, that they're going to be pointing out the importance of staying at tunes to the possibility that the kids are starting
to get anxious, starting to distrust the messages that they're getting from their parents, and of course you don't want that to happen. So nothing is straightforward and nothing is simple about the you know, the horrible situation is what did John say that a shit sandwich or something craft sandwich, crap sandwich? Right? Yeah, I mean this family was dealt a horrible you know, a horrible set of cards, right, And there's no great way to deal with this.
And I think one of the things you've been saying, Roth is that there's no right way of dealing with this.
I don't think so. I think there could be some wrong ways of doing it. I think there could be some very wrong ways of handling this, in ways that really make the whole dynamic and tragedy even more traumatic for the children than it already is. You definitely have a primary obligation to advance the interests of your children, like that's your biggest moral obligation as a parent. You also have an obligation to love them, which people think is really odd to say that you could have a
moral duty to love. But I believe you have a moral duty to love your children to the extent that you can, right, and also to the extent that protecting them doesn't weaken their capacity to deal with what life will hand them as they get older. Right, But you also have the duty to treat your children with respect,
especially as they get older. Right, So, as your children become middle school and later adolescent, their own sense of self, their choices, their autonomy matters too, right, And in respecting your children, this is where honesty comes in. You want to be honest with your children. You want to give them the opportunity to make choices on their own, within limits, so that they can learn how to do that. And you want to create a relationship in which they can
trust you and you can trust them. So through all of this, Marla and John had to balance the obligation to protect your children with the obligation to respect your children. I mean, at some point Marla knows, right, it's a matter of days, it's a matter of weeks, it's a
matter of months. But at some point she gives up, even with her superhuman determination, there's a point where it sounds like she recognizes there's no more beating the odds, right, and at that point she turns from protecting them because that you can't anymore right, to respecting them and bringing them in to the conversation.
And the way that John describes the you know, the very end of Marla's life and the week before she dies, gathering each one of their daughters, and almost it sounded like a sacred holy thing in some way, you know, not his word at all mine, but blessing them in a way with her hopes for them and her desires for them. And he describes it as incredible, eloquent, as if she was reading off a teleprompter. He said, But meanwhile, she's on death's door and her eyes are closed, and
she's just channeling something. And it just seemed like there was so much pent up and stored up love and wisdom and desire there to give her daughters everything that she had.
Yeah, without doubt, without doubt.
And when he got to that part of the story, I was speechless trying to imagine where the strength and the wisdom came from for Marlowe to be able to do that.
People talk about leaving their.
Children values testaments as opposed to you last will and testaments. Here's who's getting the necklace and who's getting the house kind of thing. It's how do you leave your children with a script for how to live your life when I'm not here? And it sounds like Marla provided them with something like that, Here's what I wish for you when I'm not here anymore. And I'm guessing she was very insightful about each of her three each of her three girls.
It's a tragedy.
Ruth Faidon, thank you so much for joining me to talk about this really heartbreaking and remarkable story and to offer your thoughts which are so valuable and I think will help so many people.
Danny, You're very kind.
It's totally my pleasure, and you're such a fan of your work and so grateful that you're bringing these issues to a wide audience
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