I have a simple reason for voting against Question 2, the “Death with Dignity” referendum, which would, if passed, legalize physician-assisted suicide in Massachusetts. People in the disability-rights movement who I respect are against it. And I agree with their reasoning.
Unlike other people you may have heard from on both sides of the question, I do not have any heartbreaking or poignant stories to share. Rather, I have a perspective that I gained a decade ago when I was researching my first book, “Little People.”
Among other things, I learned disability-rights activists worry that advances in medical technology are making it increasingly easy to diagnose genetic conditions in utero — thereby leading to the likelihood that parents will select abortion, even in cases (such as dwarfism) where the disability is not particularly severe or incompatible with what society considers to be a “normal” life.
Indeed, my wife and I encountered that attitude ourselves when our then-infant daughter saw a geneticist who wanted us to know there was nothing that could have been done. What she meant was that Becky’s dwarfism couldn’t have been diagnosed in utero (it could today), and thus we shouldn’t feel bad that we weren’t given a chance to choose abortion.
We were shocked, but I guess we shouldn’t have been. And in researching “Little People,” I learned from the geneticist Dorothy Wertz (pdf) that many people would choose abortion if they were told their child would be a dwarf — and, significantly, that medical professionals were more pro-abortion than lay people.
That’s the attitude disability-rights activists are worried about with regard to Question 2: a negative approach toward people who are sick or disabled, and who might be pressured into choosing suicide by family, insurance companies and doctors. And that’s why I’m voting no.
I urge you to read a truly moving essay in this week’s Phoenix by S.I. Rosenbaum, and to listen to an interview that was broadcast in September by WBUR Radio (90.9 FM) with disability-rights activist John Kelly, who opposes Question 2, and Dr. Marcia Angell, who’s for it. You can also learn more about the reasons for opposing physician-assisted suicide at Second Thoughts. The argument in favor is available at Death with Dignity.
What follows is an excerpt from “Little People” dealing with research about attitudes about disability and abortion.
***
I interviewed Dorothy Wertz, a psychiatrist affiliated with the Eunice Kennedy Shriver Center in Waltham, on a cold February day in the sunroom of her home on Massachusetts’s South Coast. Her husband was dying of lung cancer. She would die a year later. Nevertheless, she cut a flamboyant figure, tall and with a strong physical presence despite her advanced years, wearing a pillbox hat, turquoise earrings, and an enormous silver-and-turquoise necklace that looked heavy enough to weigh her down. I’d met her years earlier when I took part in a study she’d overseen regarding the attitudes that parents of disabled kids hold toward the medical establishment. I liked her forthright, down-to-earth manner. What I didn’t like so much was what she had learned about attitudes toward disability — including dwarfism.
In the late 1990s Wertz conducted a study of about two thousand people — 1,084 genetics professionals, 499 primary-care physicians, and 476 patients. One of the disabilities that participants were questioned about was achondroplasia, the most common form of dwarfism. The results were stunning. Among the genetics professionals, 57 percent would choose abortion if it were detected in utero; among physicians, 29 percent; and among patients, 24 percent.
To bracket this, let me pull out two other findings. The first pertains to Down syndrome, certainly a serious genetic condition, but one not incompatible with a good quality of life. Here the proportion of genetics professionals who would abort was 80 percent; physicians, 62 percent; and patients, 36 percent. The second involves a genetic predisposition to severe obesity, which is not a disability at all, or even destiny. After all, parents can teach their kids to eat properly and lead healthy, active lives. Yet even in this instance, 29 percent of genetics professionals would choose to abort, as well as 13 percent of physicians and 8 percent of patients.
What’s frightening about all of this is that we are closer to screening for such conditions on a routine basis than many people realize. Some day — perhaps in a decade, perhaps two or three — it will be possible to lay out a person’s entire DNA on a computer chip, all thirty thousand or so genes, and compare that person’s DNA to the ideal. Such chips could be generated for early-term fetuses just as easily as for those already born. Once the use of such technology becomes routine, it would cost “mere pennies per test,” as Wertz has written, to screen fetuses for thousands of genetic conditions. Including, of course, achondroplasia and several other types of dwarfism.
Wertz’s study points to another potential concern. Across the board, her findings show that ordinary people are far less likely to choose abortion than are medical professionals. (To be sure, one in four ordinary couples would choose abortion if they learned their child would have achondroplasia, which is high by any measure.) Yet it is medical professionals who will counsel couples when they learn that the child they are expecting would have a disability. What kind of pressure will these professionals use to obtain what is, to some of them, the preferable result? If we had learned the fetus Barbara was carrying in the early spring of 1992 would have severe respiratory problems and could have a whole host of other complications as well, what would we have chosen to do? There was no Becky at that point, only a possibility. And the possibility would have sounded more frightening than hopeful.
Little People of America has long argued that prospective parents who learn that their child will have a type of dwarfism should be provided with information about the good lives that most dwarfs lead, and even be given a chance to meet dwarf children and adults. It’s a great idea. But will it happen? And at a time of skyrocketing medical costs, are there too many social pressures against that happening? There’s no doubt that, in many instances, abortion would be in the best interest of insurance companies. Think of all the money they could save if they refused to cover a fetus that has been diagnosed with a potentially expensive genetic condition. Some parents, of course, would not choose abortion because of their religious or moral beliefs. But what about the vast majority of us — the people who regularly tell pollsters that they’re pro-choice, although they may be deeply uncomfortable with abortion personally? Would they be able to resist — would they, should they, even attempt to resist — when faced with the possibility of financial ruin?
And abortion is just one part of this, a crude, archaic approach that will likely fade away with improvements in medical technology — improvements that will raise few of the moral qualms that so divide the culture today. For instance, when you think about it, sex is a really messy, random way of reproducing. Sure, it’s fun. But look at all the things that can and do go wrong. In his book Redesigning Humans, Gregory Stock argues that in vitro fertilization will someday be seen as the only proper way to have children. “With a little marketing by IVF clinics,” he writes, “traditional reproduction may begin to seem antiquated, if not downright irresponsible. One day, people may view sex as essentially recreational, and conception as something best done in the laboratory.”
Even average-size couples who wouldn’t abort a fetus with achondroplasia would, in all likelihood, choose against implanting an embryo with the mutation. You’ve got five embryos in that Petri dish over there, and you can only implant one. This one has the genetic mutation for Down syndrome; that one has the mutation for achondroplasia; the other three are mutation-free. All right, which one do you think should be implanted?
And thus we will take another step down the road toward the “new eugenics” — a road that, in Stock’s utopian vision, will include artificial chromosomes to include spiffy new designer genes that will protect our descendants from disease, help them to live longer, and make them smarter, better, happier, and just generally imbued with oodles of wonderfulness.
Ultimately Stock posits a world in which we’re going to eliminate achondroplasia and hundreds, if not thousands, of other genetic conditions, predispositions, and tendencies. And we’re going to do it either by eliminating any individual whose genes we don’t like — or we’re going to change the genes.
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Dan – if I understand what you’ve written, you are making an analogy from abortion rights to physician-assisted suicide rights. And you’re worried that people who encounter the genetic possibility of, say, a terminal disease, could be pressured into selecting physician-assisted suicide by the same people who counseled others toward abortion in the first case. If that’s correct, the screamingly obvious question is: Are you also against abortion rights? It seems that if you want to make the connection you’re making, the logical extension is that you’re also anti-abortion for the exact same reason. How, on your reasoning, could you be in favor of restricting the one without being in favor of restricting the other? If that’s the case, I think it might be worth noting in the piece. If not, why not? As it is, it seems a bit like the elephant in the room.
Unless I’m missing something, and tell me if I am. I’m trying to engage seriously with your point.
David
But the bill isn’t about abortion and disabilities. It’s about terminal patients in extreme and prolonged agony wanting to choose how and when they die.
I think DK makes an unfortunate jump from patient-assisted suicide to abortion — unfortunate in that it bogs down his larger point — and I had to read the piece twice to make sure I understood where he was going. I think get the gist of it, but I also think it’s strained logic. Could patient-assisted suicide be a slippery slope? Yes. Do I think a law allowing it will mean millions (or even tens) of people who don’t want to die will suddenly be put to sleep? Absolutely not.
I respect your reasons for voting against this referendum, born of your own personal experience. For my part, I am voting FOR it, also becauses of my personal experience. I watched the God-awful suffering of my beloved father-in-law in the last throes of bone cancer, metastasized from the lungs and also in his liver. He had spent his entire life as a doctor, caring for people with cancer and researching palliative measures. The health system did not return his caring. The hospital refused to give him enough morphine to keep pace with his pain, following some inhumane protocol. No person should have to go through that. Every person in the last stages of a terrible terminal disease, when death is both inevitable and imminent, should have the option to determine the nature of his or her ending. It’s not a question of whether but of how. Margie Arons-Barron
@Marjorie: As I thought I wrote pretty clearly, my reasons have nothing to do with any personal experience except to the extent that they drew me into doing research. And one of the things I discovered is that “choice” can sometimes become coercion, whether we’re talking about abortion or suicide. (That’s also my answer to you, @David.) As for your father-in-law, I’m not sure how the awful treatment he received at the hands of our medical-industrial complex amounts to an argument for physician-assisted suicide. If he had had the good death he deserved, your opinion today might be different.
Yes, it might, but he didn’t. As part of our right to control our medical care in such dire circumstances, people deserve the option to determine that right up to the very end.
Dan – Unfortunately, just saying that “choice can sometimes become coercion” is no answer to what I thought was a straightforward point in my comment. In fact, the idea that choice can become coercion is an idea that has been used as an antiabortion proxy for decades: We need to outlaw abortion in order to save women from *possibly* making bad decisions about their own health. (Justice Kennedy’s opinion in Gonzales v. Carhart, the late-term abortion case, is a particularly noxious example of this.)
Again, I think you should fill in what seems to me an obvious gap in your argument. Since you raised the question of abortion in your example, it seems obvious that you should either: a) say that you are against abortion for the same reason; or b) distinguish why abortion rights are different than physician-assisted suicide rights in the framework in which you’re talking about them. Otherwise I don’t see how anyone could buy your argument.
David
@David: We disagree, that’s all. I think you’ll find that I’ve answered your questions. I’m pro-choice with regard to abortion, but vehemently oppose the idea of coercing prospective parents into making that choice for any reason. Ditto with physician-assisted suicide. Voting no next Tuesday isn’t going to stop anyone from killing him- or herself.
I respect where you are coming from, Dan, but I think I have to agree with David. I think making physician-assisted suicide legal would be similar to when abortion became legal: it’s not like women weren’t finding ways to terminate pregnancies before 1973, and terminal patients aren’t restrained from committing suicide today. The proposal would make the latter choice one that a physician could legally be a part of, just like Roe v Wade made the former a legal choice for MDs decades ago.
Thus, it is about finding ways to die with dignity, on your own terms, rather than having to resort to methods that can be traumatic to the body and to loved ones and families. I am entirely selfish when I say that I am in favor of physician-assisted suicide, because I want to know that if the end of my life has me facing a horrible, painful, crippling terminal disease, that I won’t have to think about choosing between a painful death or a messy self-inflicted death that will scar whoever finds me for the rest of their lives.
We end our pets’ lives with more dignity, love, and grace than we often do our elders’ lives, and our pets don’t get a say in the matter. I know that sounds flippant, but it’s an honest statement that I think says volumes.
I agree with your whole comment, Craig, but I recoil when you use language about how we end our pets’ lives with greater dignity than we do our elders’ lives. This referendum is not about how we end “our elders’ lives,” but about what our elders choose to do themselves. “We” are not ending our elders’ lives. This language plays into the hands of those who think this is a cover for eugenics. I don’t know you, but I don’t believe you mean that.
Marjorie, of course. I meant it in the cultural/societal sense, in that “we as a society” see euthanasia of our pets as a humane way to end suffering, but even discussing the issue for ourselves as people is a moral outrage (for some, at least). Thank you for pointing that out- I certainly do NOT mean that anyone other than the individual can make that choice.
Human beings are not pets. We don’t own them, and we don’t have the right of life and death over them. Applying the standard of euthanizing a pet to helping a person commit suicide is crossing a line over into a place we should not be going. It does speak volumes — in all the wrong ways.
The fact that you could talk about “we” ending “our elders’ lives” is absolutely chilling, and with that simple statement, you show how very thin the line is between people being able to make a free choice, and people making choices influenced by loved ones who communicate, whether they mean to or not, that it’s time to go. What you are saying here is that it’s somehow a mercy to give “our elders” a way out. What does that communicate to “our elders” about what we think about their lives? If everyone around you thinks your life no longer has worth, how much worth do you think you’re going to feel you have? What kind of quality of life is possible under those circumstances, and how much do those kinds of messages play into the reasons that people feel that they no longer have dignity and would rather die than go on another day?
These are the kinds of questions that we in the disability community are raising, because we live with the impact of them every day. People would do well to listen to our experience instead of fearing it so badly that they can’t imagine doing anything else but committing suicide should disability happen to them. When people have the right kinds of support, they tend to want to live; when they do not, life can feel unendurable. The answer to the social failures that make life feel unendurable, that make people feel that they have no dignity and no worth, is not to give a person a fatal dose of medication.
At any rate, this law is not about elders — unless you assume that being elderly is some sort of terminal condition with a six-month prognosis. It’s about people with terminal conditions, period, whether they’re elderly or not. The fact that you’re making it about elders is exactly the reason the proposed law is so dangerous. It says everything about what we as a society feel about those who are frail, vulnerable, and dependent upon others for support.
Way to take someone’s comments out of context. No one but the individual with the imminent terminal illness can make that choice, and that person has to be an adult, and be able to understand the choice and communicate it.
This has nothing to do with the disabled community or any other community than those people with an imminent terminal illness who would like the legal option of choosing to end their suffering. Shame on anyone who tries to paint it as otherwise.
Individuals have a right of self-ownership. If someone wants to end one’s own life, that is one’s right. It should not be up for a vote. (And one should not have to get a doctor’s permission, either.)
This is false logic. Disability rights has nothing to do with this proposed law. This is like the anti-gay marriage folks arguing that if we allow same sex marriage the next thing you know someone will be marrying their pet sheep. If you want to oppose this proposal at least argue what is being proposed, not what you imagine might be proposed sometime in the future.
DK – as you may know, I am against the bill if for no other reason that swallowing and gagging down 100 Seconals is not the pastel, blissful release being advertised. Likewise, in a time of increasing prescription drug abuse, it is insanity to prescribe a large quantiity of an addictive controlled substance to a person with no further oversight, not even checking to see if the person actually uses the fatal dose.
But you might be interested that I was a client of the Shriver Center in the early 80’s. I was asked about conditions relevant to my medication/disability. Would I abort for – Down’s syndrome? No, a good quality of life is possible, as you said. Cleft palate? – no, that can be repaired. Spina bifida? Maybe – that was a short, painful life back in 1980 without the treatments that exist now. So that was all they tested for – anything I said I wouldn’t abort for was left untested. It was an interesting way of handling it – it gave me information, but wasn’t coercive.
Great article, very poignant. Speaking from my own experience of having a Heart catheterization at age 22, it seems many doctors push procedures on patients based (not always) on insurance payouts or pharmaceutical contracts. Patient choice is usually the last thing to be considered. ( I guess the same can be said about patient choice at any point in history, especially when doctors would amputate via bone saw… but this should have changed by now, no?)
I’m voting in favor of Question 2 because I believe in privacy and choice. Maybe some doctors will push some families into an end-of life program, like your doctor tried to push you towards abortion but I know that no medical decision is made lightly. Nobody seeking an abortion needs a 24 hr mandatory waiting period to think through an abortion just like nobody needs the government to tell them “No, I’m sorry you’re terminally ill but you’re just going to have to tough it out.” -a gross over simplification I know, but how is Question 2 any different than Doctors prescribing large does of opioids to keep terminally ill patients in a state of chemically induced limbo? I can’t seem to find any difference at all.
I am a geriatric social worker and a liberal voter, and I am opposed to question 2. I have experience working in hospice, which has ways to ease our passing, including the use of palliative sedation. We need to expand our hospice and home care programs, and educate providers so that all patients are treated with dignity and compassion and informed of all their care options. As someone working in the field, I have a sense of how the lack of safeguards in this bill will put people at risk and write more about that here: http://www.second-thoughts.org/blog/2012-10-26
For those that have trouble with the connection between disability rights and the proposed law, I urge you to read more. What incredible and often unheard voices have emerged in this debate!
“My problem, ultimately, is this: I’ve lived so close to death for so long that I know how thin and porous the border between coercion and free choice is, how easy it is for someone to inadvertently influence you to feel devalued and hopeless — to pressure you ever so slightly but decidedly into being “reasonable,” to unburdening others, to “letting go.”” -Ben Mattlin http://www.nytimes.com/2012/11/01/opinion/suicide-by-choice-not-so-fast.html?_r=1&
I must disagree with Dan on this point.
I recognize that his position is much based on the trial he and his wife endured…or trial as it was at the time. I also recognize that his and his wife see themselves as blessed for having the fine daughter that they have reared.
That said, my objection is to his injection of himself and his moral compass into my life, and, by his legal coercion, denying me the right to determine my own destiny.
How does his right to dictate my options square with my right to have them?
Sorry to say, this is a rather argued piece. Disability rights have nothing to do with this issue. It also leaves out the criteria set out by the proposed referendum.
here is the actual language from the bill:
People must be:
–adult
–medically determined to be mentally capable of making the decision
–incurable, irreversible disease that will, within reasonable medical judgement, cause death within six months
–voluntarily (let me repeat this) voluntarily expresses a wish to die and has made an informed decision
It’s probably a selfish reason, but in general I support any initiative that forces people to accept more responsibility for their actions and also encourages people to have uncomfortable conversations. If there’s something corrosive to our society that is nonetheless rampant in it, it’s denial.
Also not sure I like any idea of a law telling me what I can and cannot do with my own body.
BTW Dan, you’re applying an argument about physician-assisted HOMICIDE into a discussion about physician-assisted SUICIDE. That’s kinda square-peg/round-hole isn’t it? I mean, if you’re gonna talk about all the moral implications of whether or not to abort a “defective” fetus (intentionally using loaded language) then I suppose you have to have the discussion about testing parents as to whether they’re “fit” to have a baby in the first place, right? Why not? If you’re going to give parents that power, isn’t it more moral to ensure they have the capacity to make an informed decision in the first place? Shouldn’t they have to pass tests of genetics, intelligence, literacy, politics, etc etc etc.?
Dan,
Please re-title your diary “Why I’m against Roe v. Wade,” or “Why I’m Against Eugenics.”
That’s a far more accurate description.
Oregon’s had this thing for a while now, over a decade. Less than 150 people have chosen assisted suicide, which flies in the face of what little argument you’ve made on the *actual* issue you claimed to write about.
The fact that you’d even intimate that family members would put pressure on their loved ones to die is toxic, offensive and beneath the dignity of someone with a reputation such as yours.
My cousin, who died just this Monday at age 28 of a brain tumor, moved to Oregon for her final days, after fighting for over 5 years. She, like every resident of that state with an imminent terminal illness, had the right to choose death, and like most people faced with that choice, chose no.
Yet, I’m glad she was in a state where she could have made that choice, if the pain was too much for her.
Stop making arguments of hysterics, based on anecdotes that are unrelated to the topic at hand, that have more in common with village superstitions than anything even closely resembling the truth, including the evidence exhibited in the states that have this.
Simply put, people must be of legal age to choose suicide under the proposal; this has absolutely nothing to do with dwarfism, eugenics or abortion. I’d rather these people have a safe and highly regulated way of doing so, than be forced to do so in the shadows and potentially botch an attempt on their own, magnifying their pain, or put someone else in danger in the process of their attempt.
Must of us humans are stubborn creatures who will fight death to the end, but we shouldn’t begrudge those who would choose to peacefully end their suffering — and we should provide a safe and well regulated way for them to do so.
@Ryan: Please tell us why the case of Kate Cheney is irrelevant to this discussion.
Dan – have been unable to find original sources on the Kate Cheney case on line. Do you have a link?
@Steve: I’ll confess I haven’t found a link good enough to post. I guess I’m waiting to hear if someone wants to debunk the Kate Cheney story. If I had a little more time I would check the Oregonian archives.
@Steve: I’ve done a little more checking and have decided the Kate Cheney story is probably not a good example. Sounds like anti-assisted-suicide groups have twisted what really happened.
Ryan – your statistics on how many folks have availed themselves of this option are woefully out of date. The correct statistics can be found at:
http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ar-index.aspx
Thank you for bringing up how eugenic IVF with pre-implantation genetic diagnosis (PGD) is making having a baby through sex seem irresponsible. This is why we need to protect everyone’s right to have messy ‘random’ genetic offspring with their spouse, so that they can’t be punished or coerced from having children the same way everyone has always had children. There are people who deny that marriage means a right to conceive offspring, and this is why it matters.