Category: mortality

“Heaven vs. hospital”: dying 5-year-old given a Hobson’s Choice by Christian parents

October 29, 2015 • 8:30 am

Here’s a short but ineffably sad piece at PuffHo about a five-year old girl from Oregon, Juliana Snow, who has a horrible and terminal neurological disease that will end her life her very soon:

Juliana Snow has suffered from an incurable neurodegenerative illness called Charcot-Marie-Tooth disease, or CMT, since birth. [JAC: description of the illness here.] The child can’t move or eat, wears a breathing mask at all times, and is confined to the four walls of her family’s Portland home.

Juliana is sick of repeated visits to the hospital, and so her Christian parents have had a conversation with her about whether she wants to prolong the largely fruitless treatment, which buys her a few more weeks of misery, or simply stay at home and die in the presence of her family. The sticking point for me is that they’re telling her what I see as a lie: that she’ll go to Heaven, where she’ll some day be reunited with her family.

On her own website, Juliana’s mother Michelle recounts a conversation she had with her daughter:

Mom: You don’t want to go to the hospital, right, J?

Juliana: I don’t like NT [naso-tracheal suction, the thing she hated the most from the hospital].

M: I know. So if you get sick again, you want to stay home?

J: I hate NT. I hate the hospital.

M: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?

J: (nods)

M: And it probably means that you will go to heaven by yourself, and Mommy will join you later.

J: But I won’t be alone.

M: That’s right. You will not be alone.

J: Do some people go to heaven soon?

M: Yes. We just don’t know when we go to heaven. Sometimes babies go to heaven. Sometimes really old people go to heaven.

J: Will Alex [her 6-year-old brother] go to heaven with me?

M: Probably not. Sometimes people go to heaven together at the same time, but most of the time, they go alone. Does that scare you?

J: No, heaven is good. But I don’t like dying.

M: I know. That’s the hard part. We don’t have to be afraid of dying because we believe we go to heaven. But it’s sad because I will miss you so much.

In a later post, Michelle recounts what she told Juliana about Heaven:

We had taught Julianna our belief that there is a better place for her. In heaven, she will be able to walk, jump and play. She will not need machines to help her breathe, and she will be able to eat real food. There will be no hospitals. Very clearly, my 4-year-old daughter was telling me that getting more time at home with her family was not worth the pain of going to the hospital again. I made sure she understood that going to heaven meant dying and leaving this Earth. And I told her that it also meant leaving her family for a while, but we would join her later. Did she still want to skip the hospital and go to heaven? She did.

PuffHo recounts how the parents’ wish to give Juliana the choice is controversial among medical ethicists:

In response to the mom’s blog posts, some have praised the family’s decision, while others have been vehement in their criticism. The issue has even divided the medical ethics community.

“This doesn’t sit well with me. It makes me nervous,” Dr. Art Caplan, head of the Division of Medical Ethics at New York University’s Langone Medical Center, told CNN. “I think a 4-year-old might be capable of deciding what music to hear or what picture book they might want to read. But I think there’s zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn’t really develop until around age 9 or 10.”

Dr. Chris Feudtner, another renowned bioethicist and pediatrician at The Children’s Hospital of Philadelphia, disagreed with this sentiment, however.

“To say [Juliana’s] experience is irrelevant doesn’t make any sense. She knows more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna,” he said.

In general I agree with Feudtner. What harm is being done here, even if we’re pretty sure that Juliana isn’t going to go to Heaven after she dies? How much of the child’s decision really rests on her notion that she’ll have a nice afterlife, versus on the reality of the medical torture she’s enduring now? This is a tough question, but I can’t bring myself to urge the parents (who, as Christians, wouldn’t do it anyway) to tell the child that when she dies, that’s it. This may be one of those rare cases where faith-based delusion is actually helpful.

When I was young, my 13-year-old cousin had liver cancer, and we all knew he was going to die. But he was told he had “pleurisy” and would eventually recover. Whenever I visited him in the hospital, I felt horrible, as if we were all participating in some hideous charade, and that my cousin really should be told that he was going to die. But he was 13, not 5.

As a nonbeliever, I think that Juliana’s parents are deluding her with false promises of her fate after death. But I see no way to prevent them from doing so, and, in truth, little harm in it. Would she seek more medical care if she knew death was final? Can a five-year-old make any kind of responsible decision about this? Should the parents have decided for her, without deluding her about Heaven?

These are difficult questions, and I have no answer, though I lean towards accepting the parents’ wishes. Reader are invited to weigh in below.

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Juliana and her dad. (Credit: CNN)

A tenet of nonbelief

October 21, 2015 • 11:45 am

Matthew Cobb sent me this tw**t that pretty much emphasizes a tenet of atheism: make the most of your life in the here and now, for you ain’t going anywhere after you die.

One of my other favorite anecdotes about our brief tenure on Earth comes from The Venerable Bede in his Ecclesiastical History of the English People. As Texified reports:

In Northumbria of the seventh century, King Edwin called a meeting to decide if missionaries should be allowed to preach.  Paulinus had tried to convert Edwin to become a Christian, but Edwin wished to consult his friends and advisors.  The chief priest Coifi recommended that Edwin follow the teaching of Christianity, and another advisor agreed saying:

“The present life of man upon earth, O King, seems to me in comparison with that time which is unknown to us like the swift flight of a sparrow through mead-hall where you sit at supper in winter, with your Ealdormen and thanes, while the fire blazes in the midst and the hall is warmed, but the wintry storms of rain or snow are raging abroad. The sparrow, flying in at one door and immediately out at another, whilst he is within, is safe from the wintry tempest, but after a short space of fair weather, he im-
mediately vanishes out of your sight, passing from winter to winter again. So this life of man appears for a little while, but of what is to follow or what went before we know nothing at all. If, therefore, this new doctrine tells us something more certain, it seems
justly to be followed in our kingdom.”

Well, the Christian overtones are unpalatable, but if you leave off the last sentence it’s lovely. Provided, of course, that you realize that we do know what is to follow: nothing.

In the end, what really matters?

October 6, 2015 • 9:00 am

In my view there is no good death, but some deaths are better than others. B. J. Miller came close, losing both his legs below the knee, as well as his left forearm, in a foolish stunt as a sophomore at Princeton, climbing on top of the famous “Dinky” train and getting electrocuted by the wires. Since then he’s become a palliative-care doctor and founder of the Zen Hospice Project, which, as described in the New York Times, is a small but immensely empathic facility for the terminally ill.

In this twenty-minute TED talk, Miller proposes ways to bring “intention and creativity to the experience of dying.” His emphasis is on the importance “sensuous, aesthetic gratification”: little but tangible connections with the world (and its inhabitants) that affirm one’s being.

I would hope that I could appreciate such gratifications at the end of life, but, in truth, how do I know? Miller clearly has wide experience in what palliates death, but I can’t help but feel that consuming two baked cookies as one’s about to cross the Styx won’t reconcile me to my fate. And, in truth, this highly-touted video seems to try desperately to make a virtue of necessity. Miller is to be lauded for his efforts, but in the end remains the brute fact of nonexistence.

Oliver Sacks on “filter fish”

September 15, 2015 • 1:00 pm

Just a note about what may be Oliver Sack’s last published work, or at least the last thing that he wrote that was published most recently. It’s a piece in the New Yorker (free access) called “Filter Fish“. It is of course about the Jewish dish gefilte fish (something I can’t abide, but always call “filter fish” too). Sacks loved the stuff, but only the homemade version, and preferably made by his mother.  It’s interesting that, at the end of his life, Sacks, still a nonbeliever, turned to his cultural Jewish roots. Do remember that his last New York Times piece was called “Sabbath.”

Here he draws full circle between the “filter fish” that sustained him in his childhood and then at the terminus of his life. Do read the whole piece, but here are the last three paragraphs, which I find deeply moving.

But now, in what are (barring a miracle) my last weeks of life—so queasy that I am averse to almost every food, with difficulty swallowing anything except liquids or jellylike solids—I have rediscovered the joys of gefilte fish. I cannot eat more than two or three ounces at a time, but an aliquot of gefilte fish every waking hour nourishes me with much needed protein. (Gefilte-fish jelly, like calf’s-foot jelly, was always valued as an invalid’s food.)

Deliveries now arrive daily from one shop or another: Murray’s on Broadway, Russ & Daughters, Sable’s, Zabar’s, Barney Greengrass, the 2nd Ave Deli—they all make their own gefilte fish, and I like it all (though none compares to my mother’s or Helen’s).

While I have conscious memories of gefilte fish from about the age of four, I suspect that I acquired my taste for it even earlier, for, with its abundant, nutritious jelly, it was often given to infants in Orthodox households as they moved from baby foods to solid food. Gefilte fish will usher me out of this life, as it ushered me into it, eighty-two years ago.

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Goyim: This is what it looks like.

Let’s stop talking about “rights”, or at least don’t assert them as unquestionable givens

August 25, 2015 • 12:45 pm

Now that I’ve established my philosophy cred, I want to talk about “rights”. These are just some off-the-top-of-my-head thoughts inspired by the video I’ve posted below.

There are two ways we can interpret the meaning of the word “rights” as applied to humans or animals:

a. Social, political, or legal conventions that help society run the way we’d like it to. The “right” for all people to be treated equally under the law is such a convention.

b. An unquestionable property of a human being that is said to derive from either deontological philosophical principles or from the dictates of God.

Few of us here (though many believers, like the one shown below) believe that rights come from God. But many of us see them as innate virtues and privileges of humans—things not to be questioned. I’d like to take issue with this second view.

I certainly agree with “rights” in the first sense, but not with the second. For, at bottom, “rights” in the second sense simply lead to more questions that require answers. Why are all people, genders, and races to be treated equally? Why does a woman have the “right” to control her own body when pregnant? Why does every citizen have the right to health care and clean water? I do agree with these as “rights” in the first sense: they are necessary for a harmonious society and world. But just asserting these things as “rights” shuts down further analysis: it’s a discussion-stopper.

At bottom, there is a reason why people claim that something is a “right”, and that mandates further contemplation and rationalization, as it does for, say, abortion or gay marriage. In my view, those rights derive from a consequentialist morality: we should allow gays to marry because it is good for society (and of course for gays) that they enjoy the same marital privileges as straight people. When you assert something as a “right” in the second sense, you are trying to forestall a discussion of the reasons why that “right” exists.

I would prefer that we simply stop talking about “rights.” That, of course, won’t happen. But if we continue to do so, we should make it clear that they are social preferences, codified into law and behavior, that exist for reasons. This means that they are open for discussion, for of course “rights” will change as society changes. We now have a “right” to assisted dying (or so I feel), but that is something that reflects a chance in society’s mores. Rather than “rights”, I’d say “right”, as in “it is the right thing to do to allow gays to marry”. Or “it is the right thing to do to allow the terminally ill to end their own lives.”  Such a view allows us to discuss why these things are “right,” and leads to possibility of constructive dialogue and examination of our own beliefs.

These are all thoughts I had when listening to the video below, “The End of Reason: A Response to the New Atheists”. It’s a 42-minute talk by Ravi Zacharias, author and Christian apologist. (I defy you to make it past ten minutes!) The talk, in turn, is a distillation of his 2008 book, The End of Reason: A Response to the New Atheists.

Here we see the notion of rights and morals as things given uniquely by God.  Here’s the YouTube description

Ravi Zacharias replies to the New Atheists, like Richard Dawkins (The God Delusion), Sam Harris (Letter to a Christian Nation, Christopher Hitchens (God Is Not Great), and Daniel Dennett (Breaking the Spell). This video is part of the ‘Contending with Christianity’s Critics’ 2012 conference.

The thesis in Zacharias’s talk, as it surely is in his book (I haven’t read it), is that atheism is bad because it destroys meaning and purpose of life: our “shared values”. And where do those shared values come from? They are  “divine imperatives implanted in the heart and conscience of every human being”—i.e., they come from God. Once, he claims, we all shared those values, and that grounded society, but New Atheists are chipping away at the foundations, making those values questionable, questioned, and, for some of them, insupportable. We are, he says, created a divisive and harmful cultural revolution away from “shared meanings”.

It’s amusing to see Zacharias’s religious two-step when he has to argue that Islam doesn’t share the same meanings and values (after all, he’s justifying Christianity as the true faith). After all, Muslims also claim that their morals and values come from God. Zacharias has an amusing argument about why they’re wrong; it’s in the first 15 minutes, and I won’t spoil it for you.

When, as Zacharias does, people claim “rights based on God or some immutable moral absolutes” (and these are roughly equivalent), they are doing something that’s bad: trying to prevent us from questioning why we should treat human beings one way versus another. Yes, it’s settled that humans have “rights” not to be slaves or imprisoned without reason, but there are reasons for those “rights”, and it behooves us to remember that.

Regrets of the dying

August 21, 2015 • 3:30 pm

If you’re a determinist like me, it’s useless to have deathbed regrets about what you didn’t do in the past, for you couldn’t have done otherwise. However, we can, by hearing about others’ regrets, modify our behavior, for neuronal rewiring in the face of experience does not violate determinism.

Herewith is a list I found on Facebook, which turns out to come from a 2012 Guardian piece based on the experience of a terminal-care nurse:

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All of these seem sensible (especially the yellow one!)—except for the one about “letting yourself be happier.” How can you let yourself be happier if you’re a determinist? The only way to do that is to somehow grasp that you want to and can be happier, and then take whatever steps you think would bring on change.

Do you have regrets not given on this list?

A good man faces his end

August 21, 2015 • 12:30 pm

There’s little doubt that Jimmy Carter doesn’t have long to live: he has liver cancer, and now four spots of melanoma have metastasized to his brain from an unknown source. The prognosis is, of course, very dire. (See the New York Times article here.)

Characteristically, Carter held a press conference yesterday at his eponymous Center to discuss his diagnosis and his reaction to the bad news. Here’s the whole thing. His statement lasts until 7:50, and then he answers questions from the press.

Highlights: The most striking thing, to me, is the sense of humor and calmness with which Carter describes the road ahead, even seeing it as a “new adventure.” This is truly a man at peace with his fate, and his conference is punctuated by many smiles. Perhaps he’s sustained by his faith, but I like to think that it’s simply his bravery when facing the inevitable. And he maintains his eloquence throughout.

4:10: Carter says, smiling, that he’s finally going to cut down his extensive workload for the Carter Center

8:30: He describes his reaction after the diagnosis, saying that he was “surpringly at ease” in view of his long and gratifying life. He adds in responding to the next question that he’s “completely at ease with whatever comes” and he’s “very grateful for his time”.

15:10: Carter notes he still hopes to go to Nepal, but there’s a hitch since it conflicts with his treatment schedule.

16:00: He reflects on his performance as an ex-President, and on the formidable achievements of the Carter Center.

22:25: When asked about his greatest achievements, he says, beaming, “The best thing I ever did was marry Rosalynn. That’s the pinnacle of my life, and we’ve had 69 years together–still together. And that’s the best thing that happened to me.” This made me tear up a bit, for few relationships last that long, much less remain strong that long.

23:37: He gives a funny answer to a question about what he would have done differently during his life. I’ll let you listen to that yourself.

This is the best ex-President ever.