Art Caplan has an opinion piece that came out yesterday – and it’s linked from just about every conceivable place on NBC and MSNBC. It’s an endorsement of the proposed legalization of assisted suicide on the ballot in Massachusetts. While disappointing, it’s not that big a surprise; Caplan has been sliding toward this unqualified endorsement of legalized assisted suicide for several years.
I’ve long had mixed feelings about Caplan. He can write some insightful analysis and even show a willingness to break from the ranks of fellow bioethicists as he did in at least two instances – the so-called “Katrina killings” at Memorial Medical Center in New Orleans during Hurricane Katrina and in his criticism of the so-called “Ashley Treatment.” And, while he’s ended up on the same side as disability activists in some instances, he’s never given us more than a casual mention, at least in anything I’ve read. I know he reads this blog occasionally, so he gets information on disability rights activism and advocacy from here when he does stop by.
As I’ve said, Caplan produces some excellent analysis at times. Other times – as in his latest effort – I get the feeling he more or less “phoned it in.” By that I mean that he provides nothing more than very superficial statements and arguments with few concrete facts. That’s exactly what he does in his latest, an endorsement of legalized assisted suicide, and it’s little more than a reproduction of the talking points assisted suicide advocates are using right now in Massachusetts.
Here’s an excerpt:
The proposed Massachusetts law is very restricted and contains important safeguards. Experience in other states shows little reason for worry about abuse or misuse. Instead the more people who are going to die know they can end their lives sooner if they choose, the more many of them fight harder to live.
Even the editorial board of the Oregonian had questions about the glowing reports of the success of the safeguards as they stated in September of 2008 (editorial is unavailable except through paid archives):
On the negative side, Oregon’s physician-assisted suicide program has not been sufficiently transparent. Essentially, a coterie of insiders run the program, with a handful of doctors and others deciding what the public may know. We’re aware of no substantiated abuses, but we’d feel more confident with more sunlight on the program. (Emphasis added.)
Daniel Callahan, President Emeritus of The Hastings Center, shared similar sentiments just yesterday:
I have not said much about the potential abuse of “death with dignity” laws. I have no special reason to believe there are serious abuses in Oregon and Washington, or that there need be any in Massachusetts, but we will never really find out if there is. The potential for abuse that most worries me is the legitimization of suicide, whose numbers are now rising. There are all sorts of reasons for people of all ages without terminal illness to want to get rid of their unhappy lives. They should not think that suicide is an acceptable and rational way to cope. Beyond that, I cannot see any good that can come of legalization of PAS. “Choice,” that all-purpose value word these days, used by the liberal left and the market right, is not a good enough reason to change some deep and valuable traditions of the doctor-patient relationship.
You can read his entire article on The Hastings Center’s “Over 65 Blog.”
Caplan’s sloppiness doesn’t stop with that small item. Making one of his rare references to disability groups, he makes sure to pair us with the “usual suspects”:
Some disability groups and religious organizations are fighting hard to get a “no” on the “Question 2,” initiative as well. They believe that the terminally ill who are disabled deserve better palliative care and emotional support rather than a prescription of deadly medicine. They also worry that people may feel compelled or coerced into choosing death because their care is expensive, they see themselves as a burden to others or because relatives are thinking that they do not want to spend the grandchildren’s college tuition to keep grandpop going in a nursing home or ICU. Given the current push to contain medical costs, the biggest fear is that the vulnerable will get the bum’s rush to the hereafter. (Emphasis added.)
A little later he adds this “straw man” version of concerns of opponents of assisted suicide:
The critics are worrying about a shift to mass suicide inspired by heartless doctors and families pressuring dying patients to end it.
As luck would have it, there are several disability-centric related critiques of assisted suicide that have been published lately. Just today, the NY Times published an op-ed by Ben Mattlin titled “Suicide by Choice? Not So Fast.” Here’s an excerpt, relating some concerns – the real concerns upon which Caplan built his Straw Man:
I was born with a congenital neuromuscular weakness called spinal muscular atrophy. I’ve never walked or stood or had much use of my hands. Roughly half the babies who exhibit symptoms as I did don’t live past age 2. Not only did I survive, but the progression of my disease slowed dramatically when I was about 6 years old, astounding doctors. Today, at nearly 50, I’m a husband, father, journalist and author.
Yet I’m more fragile now than I was in infancy. No longer able to hold a pencil, I’m writing this with a voice-controlled computer. Every swallow of food, sometimes every breath, can become a battle. And a few years ago, when a surgical blunder put me into a coma from septic shock, the doctors seriously questioned whether it was worth trying to extend my life. My existence seemed pretty tenuous anyway, they figured. They didn’t know about my family, my career, my aspirations.
***
This is but one of many invisible forces of coercion. Others include that certain look of exhaustion in a loved one’s eyes, or the way nurses and friends sigh in your presence while you’re zoned out in a hospital bed. All these can cast a dangerous cloud of depression upon even the most cheery of optimists, a situation clinicians might misread since, to them, it seems perfectly rational.
Just yesterday, The Phoenix – a Boston weekly paper – published a long article by S.I Rosenbaum, titled “Killing with kindness: Why the Death With Dignity Act endangers people with disabilities.”:
I think my opinions about doctor-assisted suicide crystallized the night Mike — my wheelchair-using, ventilator-breathing boyfriend — choked on pineapple juice, passed out, and died.
He was dead for several minutes, on a steel table in the ER. The doctor shocked the pulse back into his heart and dropped him into an induced coma, but it still wasn’t clear whether he would make it. As I stood by his bedside, shaking, one of the nurses touched me on the shoulder.
“Maybe it’s better this way,” she murmured.
I’ll never forget that moment. We’d been watching a movie together a few hours before. We had plans to go clubbing. Maybe it’s better this way?
I’m not a violent person, but I wanted to punch that lady in the face.
When I started going out with Mike, I thought that prejudice against people with disabilities was something we’d left behind along with Jim Crow and sodomy laws. I was shocked, again and again, to find that I was wrong. So wrong. Everyone I met had ideas about what it must be like to date Mike — that we never went out, that we couldn’t have sex, that I must have to take care of him all the time — that were so false as to be laughable. We did laugh at that stuff. We had to. But for every person who came up to us to congratulate Mike on his “bravery” in taking a trip to the mall, there was someone who actually thought he’d be better off dead.
Some of those people were doctors.
I defy anyone to interpret anything in either of those articles as saying there’s a great fear from “heartless doctors.” (There are some outright bastards out there, but that’s not the real issue) The real issue is the fear of medical professionals wanting to be “compassionate” based on what they believe about our lives.
I can already hear Caplan and others voicing objections – saying that assisted suicide legislation is limited to people who are “terminally ill.” We’re just being paranoid.
No. We’re informed.
The organizations pushing legalization of assisted suicide are sophisticated and well-funded. And, like many advocacy organizations, they are following an incrementalist strategy in terms of their policy goals. Through polling, focus groups and experience, they’ve developed a vocabulary about these topics that draws a favorable response from the public. And, for the moment, the more “respectable” groups are sticking to policy that is allegedly limited to people who are “terminally ill.”
But the signs of more expansive “advocacy” are already in evidence. The assisted suicide vigilante group Final Exit Network (FEN) facilitates the suicides of old, ill and disabled people and makes no secret that they don’t limit their “eligibility” to “terminally ill.” Think of them as the Tea Party arm of the “Right to Die” movement (and, no, that’s not a compliment). Their activities and agenda clearly involve people with disabilities. Recently, Derek Humphry (Hemlock Society co-founder, FEN advisor) sent an email to his “right to die” email list announcing a chapter of FEN was opening in Oregon, where they will do the kind of “underground” assisted suicide the “legit” advocates claimed that the law would prevent.
Meanwhile, the “legitimate” group Compassion and Choices is engaging in a campaign to promote the “death with dignity” of elderly people who are just plain tired of living through “VSED” – voluntarily stopping eating and drinking. They are successfully enlisting hospice and palliative care professionals to facilitate the process. Ironically, Caplan recently published an article in The Lancet about the death of a man who had horrible bed sores and refused to let staff move him to try to help the sores heal. Caplan thought a case like this – which ended in the man’s death – deserved a discussion of the limits of autonomy, the effects on medical professionals, and the effect on patient care over time. Frankly, I think that the program by C & C is much more deserving of that kind of conversation, as they are actively engaging a growing body of palliative care practioners to become comfortable in playing a role in the deaths of people who are simply old and say they don’t want to live any more. That is going to have a much more far-reaching range of effects than the one individual who wanted his bed sores left untouched.
But questioning the effect of an effort like C & C’s would mean inviting the retaliation of a large and powerful advocacy group. That’s probably farther than a certain bioethicist is willing to go. Maybe he’ll just wait until they’ve pushed agenda and it’s viewed as acceptable by the public and the medical profession. Then he can write and tell us that it’s all ethically OK – and use their talking points to do it.
A couple of small points, because Stephen Drake covers it thoroughly. Reactions, as I read: Why did the man (allegedly) not want the staff to treat his bedsores by moving him? Maybe the person(s) moving him were rough and hurt him. Maybe they were nasty verbally. Maybe he wasn’t getting pain meds. Was he receiving other treatment?
I have a friend with bedsores, I recently learned, from the family member of my friend, when I asked how my friend was. My friend and family member are on another coast of the U.S. My friend has one or more bedsores from being left in bed in a group home, with pain ongoing already, from neuropathy and back pain from a fall on top of other disabling illness. My friend can’t write due to hand cramping. My friend is not yet 60 years old. My friend’s family member moved my friend to another place, one where a couple takes care of an individual and the family member does “care” on a weekend day. My friend has a special vacuum cushion for the bedsore(s)and is walking to the refrigerator now. I have never received an answer to the question, “Why isn’t good pain medication an answer?” or “Medical marijuana is legal in your state, why isn’t my friend getting any? It would help with appetite issues.” No answer.
Another friend died of Mercer Staph infection picked up in a hospital, three weeks after admitted for bed sores (from sitting in his power wheelchair 12 hours a day in his greenhouse selling plants) in a state in the SW. The hospital where he was sent was like the nest of Russian dolls. He’d started with a bedsore at his home, always having problems getting care or hardware because he was slightly above poverty level due to car insurance settlement and the limits of Medicare and his rights as a veteran of the military. The issue of care is the root topic and getting care at home while disabled is THE big topic not acknowledged by those who would like to kill us off, just insisting in propaganda mode, that we “don’t want to be a burden to our families” rather than, why isn’t cost of care routine, given freely, services allowing for choice or who we’d like to hire/pay, including family members who can’t work if doing care-which is why my friend’s daughter had to stop as caregiver after his parents died and then,his lover left). My friend went to his nearest VA hospital, as I said, he was a veteran of U.S. military -and even did art for the VA hospital’s brochure, but they passed on the bed sores and sent him to a bigger regional hospital and where died from infection picked up at the hospital(but not in pain as he was paralyzed from the shoulders down, as a result of being thrown from a car 25 years earlier, when it crashed as he was driving long distances as a tv salesman, before he went back to art).
I mainly do my networking and friendships by mail (postal and now also email), but my friend and I had had about 5 phone conversations in the 25 years or so we were friends, as well as correspondence. I spoke with him shortly before he was hospitalized. He wanted to live. He wanted every care possible, he said, when I questioned his views on living at that time. He had only considered dying by his own hand in the years before he learned on his own, that he could have a good life while almost completely paralyzed. He could breathe on his own and he could use one arm, drawing and using wood burning tool with one hand, using a splint at his wrist. (8 years to learn on his own, after a nurse said, “I don’t know why we have to take care of someone who didn’t put on his seatbelt.”.)
Society makes it harder. Harder includes the irony of making things more expensive. But, let’s face it, the economics of illness and services. The complaint is not that medical hardware (wheelchairs with battery power, transportation, all kinds of equipment) costs a lot, with high profit margins for manufacturers and providers. Caregivers earn low wages, which is very wrong. Rents paid for persons who are severely disabled and don’t have income from employment (if they can work but can’t find accessible work/transportation,etc.) is cheaper than nursing home incarceration, which is a business. Add the ignorance and discomfort of doctors re disability (who wants us if we can’t be “cured”?)- I often ask: how many doctors with disabilities are allowed in medical schools and licensed?
Our society has no problem shoving money at the rich (tax policies), bailing out the banks but the media and those who “believe” we don’t want to live* think we and poor people don’t want/deserve better (similar propaganda exists in re hurricane survivors, homeless, …make your own list from the 99+percent).
_*My experience, like Miss Marple from Agatha Christie novels, remind me of things I’ve seen before. People who has disabilophobia (fear and loathing of disability and disabled people) -including doctors, remind me of 4 year old children who won’t pick or accept a broken cookie. I call it the “broken cookie” syndrome.
My last bit is about Caplan. I recall his speaking on the Thom Hartmann radio show shortly after BinLaden was murdered by U.S. extrajudicial killing and Caplan making a joke about it. It told me something about Caplan’s views about the value of life and law.
(Techies: any chance of “preview”/edit options if there isn’t one? There’s a chance I’ll mess up and delete if/when I review my comment for grammar and spelling. It’s happened already.)
I am strongly in favor of euthanasia as permitted in Oregon. Obviously the safeguards against abuse must be enforced.
In my 40 years of practicing medicine in a small town, I have never been ask to assist in suicide, that is until this year following my retirement. It was agonizing to watch the months of suffering incurred because this man with ALS happened to live in California instead of Oregon.
Lets avoid attacks on persons or organizations for their stance. That just distracts attention from the core issues. For me one has a right over one’s body at all times, but when it comes to euthanasia there are certain provisos: one must be of sound mind and not depressed, one must be within 6 months of death as best as can be ascertained, the request must be made by the individual himself — no one has authority over another autonomous human being, and 2 physicians must agree that the above conditions have been met.
With adherence to the above requirements argument of abuse and slippery slop should be answered. To say that that a law can be broken is not a good reason to not have the law. Illegal behavior occurs in either case.
The discussion ought to be directed toward the central issue of end of life suffering in the days or weeks before death. to say “yes but… what if…the rules aren’t followed…” just avoids dealing with our legitimate fear of dying. To confuse euthanasia with murder doesn’t help either.
But if we look at our own deepest fears, that of dying, of suffering of losing all control, we may be able to look at this issue with some wisdom.
And, in all matters of autonomy, if you don’t want it don’t do it. And let’s hope that none of us ever is put in a position of requesting it.
So I should have confidence about safeguards and how physicians will adhere to them?
You mean the same way they’re so conscientious about reporting medical errors and/or malpractice (theirs or others)?
Most of your statements might be more compelling to someone whose birth wasn’t badly handled by a doctor who then went on to tell his (my) parents that the best outcome would be for “nature to take its course.” Nobody on medical staff argued with the doctor or told my parents he might be painting a worst case scenario as fact. Yeah – I have a lot of faith in safeguards and professional integrity.
this is a strong statement from someone who obviously has a compelling reason to distrust this doctor. but there are untrustworthy people everywhere. Is this a good reason to prevent those suffering from unbearable pain at the end of life from requesting a prescription for life ending medicine?
Do your homework. A small fraction of people seeking assisted suicide do so because of “fear of pain” – that’s right we don’t know how many were actually *in* pain, just what small percentage sought death because of the fear of it. Top reasons are fear of being a being a burden and loss of autonomy. These aren’t the reasons assisted suicide proponents want to showcase, though. BTW, lots of elderly people who *aren’t* terminally ill feel like they’re a burden and losing autonomy. What message do you think *they’re* getting?
This is a good point. We who support PAS physician assist suicide need to consider these unindended consequences to society. Will this option alter an older person’s view of the value of his life and life in general? Will this optionsuggest that because the law allows an escape from the suffering of age, that it gives tacit approval for person’s to remove themselves who feel themlelves to be useless, or just getting too old.
These feelings are not uncommon. I am almost 74 and I have been aware of my mortality most of my life. The fact that I have always had the means does not lessen my desire to live to the fullest. Our desire to live is a complex matter: spiritual and family and everything else.
But Doctors and politicians need to be careful to add safeguards, to the extent that they can, into this law. I know this bill SB128 and I know it has good safety built in. A legal “suicide” is only for very narrow reasons. But its a good point nontheless.