Why I’m Voting “No” on Massachusetts’ Question 2

Imagine this situation: A woman arrives at a hospital for a medical procedure. She is obviously sick, in pain, and severely disabled. She’s in a wheelchair and on oxygen. She needs help getting from her car to her wheelchair, and going to the bathroom, and changing into her gown. Whenever she’s moved, she grimaces, her hands and feet curled in pain. It looks and sounds like talking and even breathing are an effort. In fact, her disease has rendered her incoherent, so the person with her translates her gestures and sounds to the nurses. The patient is asking for a legal document before the procedure — a form.

The nurse immediately understands. “I know what you want,” she says and returns quickly with the paperwork. She explains that these are advance directive forms that the patient can fill out to decline life-saving treatment. The patient says no, she just wanted to update the contact information on her health care proxy forms, which the hospital keeps on file. In fact, the reason she is certain to keep her health care proxy forms updated is that she does want extreme measures. No matter how grim her situation appears from the outside, she wants her friends to advocate for her right and desire to live.

Of course, this is not hypothetical. The woman is me. That incident happened a few years ago. At the time, I was too stunned to take in the meaning of what happened. It was only later that I realized that the nurse had, in effect, offered me a DNR (do not resuscitate) form without my asking, that she had basically asked me if I wanted to die. It’s possible she offers those forms to everyone, but I doubt it. I think it’s more likely that my appearance, the fact that I was visibly severely disabled, led the nurse to the conclusion that I didn’t consider my life worth fighting for.

That story is part of my very personal reason for opposing ballot question 2: I know the “slippery slope” referred to below is not a hypothetical for the future. Some people have already slid down it. Some people have already been pushed. I learned that day that I had to hold onto my breaks even tighter than I thought I did because I was already on the slope.

But there are a lot more reasons to vote against Question 2. The fact is that even if you support the idea of assisted suicide for dying people — the right of someone who is actively dying, who is in pain at the end of their life and wants a way to hasten death by just a few days — you should still oppose this ballot initiative because it is full of gaps and loopholes and opportunities for abuse. It is, quite simply, a bad bill, a bill that ought to spur you towards Second Thoughts:

  • Question 2 is modeled in the laws in Oregon and Washington — laws which have led to documented cases of abuse, discrimination, and pressures to choose suicide over medical treatment based on cost considerations. For example, from an article by John Kelly in Disability Issues: “Disabled people constantly hear how expensive we are, how money could be better spent elsewhere. In Oregon, Barbara Wagner and Randy Stroup received letters from Oregon Medicaid denying them chemotherapy for their cancer.The letters did inform them, however, that the state would cover the $100 cost of assisted suicide. Because assisted suicide will always be the cheapest treatment, its availability will inevitably affect medical decision-making. In a system constantly under pressure to cut costs, choice will be constrained.” (More on this topic in this excellent article, PDF, by Carol Gill.)
  • Elders and people with disabilities are at greater risk for abuse than the general public, and they are also the people most affected by this bill. The rate for elder abuse in Massachusetts is estimated at one in 10 already, with the vast majority of abusers being caretakers — family, heirs, and providers of medical and personal care — the same people in a position to help someone obtain and ingest the poison pill.
  • Risk for abuse is inherent in the law: According to the Cambridge Commission for Person’s with Disabilities,Under this initiative, an heir could be a witness and help someone sign up for assisted suicide despite a potential conflict of interest. Once a lethal drug is in the home, there is no requirement for professional oversight to monitor how that drug is administered.
  • The National Council on Disability (NCD) Position Paper on Assisted Suicide states that: “The dangers of permitting physician-assisted suicide are immense. The pressures upon people with disabilities to choose to end their lives, and the insidious appropriation by others of the right to make that choice for them are already prevalent and will continue to increase as managed health care and limitations upon health care resources precipitate increased ‘rationing’ of health care services and health care financing. . . . The so-called ‘slippery slope’ already operates in regard to individuals with disabilities. . . . If assisted suicide were to be legalized, the most dire ramifications for people with disabilities would ensue unless stringent procedural prerequisites were established to prevent its misuse, abuse, improper application, and creeping expansion.”
  • Inexact wording and application. Anyone who a doctor says has six months or less to live can be given fatal drugs, but doctors are fallible, medical conditions are diverse, unique, and complex — it is not easy to determine how long someone will live. Many people outlive their prognoses for months or years. Some even recover. (I know someone who was terminally ill 15 years ago, and she’s still writing and publishing books today!) It is also a fact that wherever assisted suicide is legal — whether in Oregon or the Netherlands — the definition of who is eligible becomes broader and broader. It is not confined to people who are imminently dying, but also to people who are not terminally ill, particularly people with disabilities, chronic illness, or elderly people.
  • Inattention to mental health issues. According to Second Thoughts member, John Kelly, “In 2011, exactly 1 out of 71 Oregonians seeking assisted suicide were referred for psychiatric evaluation. With the total 14-year referral rate below 7%, people are not being adequately evaluated. Michael Freeland, who had a 43-year history of depression and suicide attempts, easily got a lethal prescription, and it was only because he mistakenly called an opposition group that he was spared suicide. He also outlived his terminal diagnosis.”
  • One of the key reasons that disability rights activists oppose such laws is that the focus of the laws, and the way they are carried out, are not really about providing more comfort in the last hours of a life that is already fading. It is about fears and lack of understanding about what it means to be disabled or ill — a state that many of us spend our entire lives in, often quite happily. Quoting Kelly again: “That word ‘dignity’ in the act title signals that assisted suicide is not about preventing pain and suffering during the actual dying process, but about escaping the perceived quality-of-life beforehand. People’s concerns listed by prescribing doctors are almost exclusively social: people seek assisted suicide because of limitations on activities, incontinence,feeling like a burden, and perceived loss of dignity. We disabled people know that our dignity does not depend on performing our own self-care or being continent every hour of every day. We know that there are social supports such as home care and PCAs that can remove any family burden, and we understand that our dignity is just fine thank you, without having to die to get it.”

Or, to put it another way, I echo Diane Coleman’s statement, published in the New York Times, “It’s the ultimate form of discrimination to offer people with disabilities help to die without having offered real options to live.”

For more information on Question 2 and assisted suicide, please visit the Second Thoughts website or read this excellent New York Times op-ed on Massachusetts Question 2 which was just published on Wednesday.


Sharon, the muse of Gadget, and Barnum, SD/SDiT

6 Responses to “Why I’m Voting “No” on Massachusetts’ Question 2”

  1. 1 Nergler November 2, 2012 at 1:32 pm

    The story about the couple in Oregon being refused treatment is horrible. The story about what happened to you is even worse. People should never assume that someone wants to die because he or she is disabled. Most people want to live. Assisted suicide should never be “suggested” to a PWD because people ASSUME he or she must be so miserable they want to die. Can any state in this increasingly uncivilized country pass a law that has sufficient protections for the elderly, the disabled, and the chronically ill? I wonder. I believe that a person who is suffering should be able to choose when they die, but is it possible to pass a law that won’t be abused?

  2. 2 eileenanddogs November 2, 2012 at 10:05 pm

    Sharon, again I am so glad you posted about something I needed to be educated about. My state doesn’t currently even have this under discussion but these are such important points you make. Thanks.

  3. 3 Sharon Wachsler November 2, 2012 at 10:11 pm

    Thank you so much, Eileen. I really appreciate this response. I’ve been feeling discouraged by blowback. Some who already know and agree with these points have tweeted their support but most I’ve reached out to have told me they’re voting “Yes” anyway. (Sometimes, they say it thoughtfully, like, “Even with these flaws, having seen x person suffer, I am voting for it,” but others just say, “I see no reason not to vote yes,” and then I wonder if they understand at all where I’m coming from. The BEST responses are people who have said they were planning on voting yes, but now they are thinking about it, contemplating the information. Your response, like theirs, really helps me feel HEARD and like I, and my disabled friends, MATTER. Thank you!

  4. 4 mabella mendez November 5, 2012 at 9:31 am

    Sharon, thank you for your articulate, insightful comments and experience. I also see and understand the other side, too. I do believe if the law is passed it could be abused. As it stand now, doctors are cutting back on pain medications. They are blaming people with pain as drug abuser when they need help. This will be another way of avoiding the help they need by saying they are fighting the drug crime. This would drive people to want to end their life.
    I agree with you that the person should have the support and the adequate medications so they can have meaning in their life.
    It is complicated. This is just one aspect. There is the money. Insurances are limiting health providers. It is a system that reinforces people making decisions to end their life because there is no adequate care.

    I know, if I or a love one was so ill that there were no other way to live and enjoy life, I would want to have the option to die peacefully without excruciating pain or artificially kept life.

    Thank you, again. Mabella

  5. 5 Sharon Wachsler November 5, 2012 at 9:58 am

    Thank you, Mabella, for your thoughtful comments. I truly appreciate the thought and care that went into them.
    I think we know each other in real life, yes? 🙂
    Yes, it’s a serious problem about people not getting adequate pain treatment both for chronic conditions and acute conditions. I learned the latter recently when my mom had a herniated disc and she was in very bad pain and the doctors would not prescribe her anything to adequately deal with it.
    For chronic pain, there were times I spent years without pain relief in large part because doctors saw no reason to provide it. Initially to prescribe anything, and then later to prescribe anything that worked.
    I have never had a human person in my life need pain relief at the end of life and not get it, so I hadn’t known that was hard to get until some people told me their experiences of dying friends or family. The people I know who have died from long-term illness did have as much pain medicine as they wanted.
    I recognize it’s not a simple issue, at all.
    My hope is that when people with disabilities and chronic illnesses — and ALL people — are treated with respect and provided the supports they need to live in safety and dignity (as each person defines it for themselves) in their own homes (if that’s what they wish) and treated like their lives matter, regardless of what they “do,” we can say, “OK, because disabled people are not under threat of being pressured into killing themselves or being actually killed by others against their will, NOW we can turn to ways to help people end their lives when they are dying and know that is what we are really talking about.” Because I actually am in support of that concept; it’s just that the way it gets used currently and historically — and the way this bill is written in particular — provide huge opportunities for it not to be used that way.

  6. 6 brilliantmindbrokenbody November 25, 2012 at 3:33 am

    This is one of those topics that I have slowly come to realize I held deeply flawed ideas about, and I’ll admit that at this point, I struggle with it still.

    I remember when the law in Oregon was passed. I was young, 11, and just beginning to gain something resembling political awareness. I reacted to it as you might expect a well-behaved, authority-respecting, more-or-less able-bodied child might: I thought, this is a good thing, to help people who are miserable and let them pass on the torment of slow death. It’s a kindness.

    Then, when I was 15, I tried to kill myself. Right-to-die laws got brought up in one of my high school classes after that, and I remember poking around the specifics of the Oregon law. I was horrified to discover that counseling wasn’t mandatory. I knew what it was to think, for just a moment, that the world would be better without me in it, and that all I did was bring pain to those I loved. How much easier would those thoughts be if I’d had a physical disability and needed to rely on my loved ones for assistance, with the way society discusses people in that situation as burdens. I believe this was after I’d had my annoying back and knee injuries and had to ask people to tote my backpack from one class to the next for me, as I couldn’t do it, so I had just an inkling about needing assistance.

    Now, having chronic illness and disabilities, I am mostly horrified by these laws. They just can’t be structured to protect us, to make sure that we get proper and adequate medical care, and we have the results to look at – results that show people being denied life-saving and life-prolonging treatment, not to mention the farce that is pain management these days. Not to mention that the class of people who should have a right to die just gets bigger and bigger, and seems on track to be congruent with the group of people whose murderers get extremely short sentences, even though it’s plainly first degree murder, because it was a ‘mercy killing’. Mercy my fat, disabled ass. I can’t remember a one of those where the person who was murdered actually asked for it.

    The thing that gives me pause is cases like Terri Schaivo. Where no one actually knows what she wanted, and so there was that horrid political battle about whether she could be taken off life support. I don’t want my body to hang around if what makes me ME is gone, and because of similar cases, I have it in writing, on the proper witnessed forms, and my loved ones all know. Sure, she isn’t really a right-to-die case, as they didn’t need to administer a medication to her, just withdraw support. It makes me uncomfortable how some parts of the disability community were horrified that someone who, to my way of thinking, wasn’t there anymore was allowed to die. Once the brain is in persistent vegetative state, especially when there is a need for complete medical support for all functions, I don’t quite understand how there is still a person there. I suppose I’m making distinctions that others don’t make, and I can logically see how there can be a slippery slope argument here, I just don’t agree with it.

    And then there are times like now, where I’m in much increased pain for a while and it wears on me. I wonder, when I get old and add osteoarthritis to the mess I already have (which is basically inevitable, as my cartilage is bad to begin with and the hypermobility and instability in my joints means more pounding and damaging on that already less-than-ideal cartilage. I know pain management is going to be hard. I have a dear friend with the same condition as me who doesn’t have anything resembling access to medical care and medicine she needs, and I am to be honest utterly terrified that I’ll find myself in that situation one day, or that my fiance will end up with a job that only has so-so insurance, so that the HMO rations out my care and I have to ration what I do out of pocket because I can only afford so much. That possibility looms out there, and it scares me more than I can say. At least right now, with the exception of physical therapy, I have insurance that covers nearly everything my doctors can think to help me, and things still aren’t good – so much dysfunction, so many things I can’t do, so much pain.

    It winds up with me feeling horribly conflicted, because I think that maybe, if these laws were written properly and applied well, there is a small chance they could be good for us. A very small chance. I’m thinking in cases of things like pancreatic cancer, which is supposed to be pretty horrific to die of, where they can’t entirely suppress the pain and the other symptoms are pretty damn distressing, and death is on his horse riding towards the person, not just some figment off in the distance. But for the most part, the reason people want to die is because they can’t get basic needs met, or they don’t believe they can get basic needs met – dignity, autonomy, pain relief, relationships, stimulation, their own home, etc. Things that we must, we MUST address before we start talking about letting doctors prescribe drugs to kill people. Aren’t there enough ways for someone to commit suicide to do it without legislating in a new option that looks legitimate, so that people who would never consider ‘traditional’ suicide begin to think that physician-assisted suicides are okay.

    I’m sure I didn’t entirely make sense there, in my long and rambly post, because I should not be writing in the wee hours of the morning, I should be sleeping. I guess I just wanted to talk about how…well…how complicated this issue is, and the thorny problems with it. The reason I can’t just completely toss the option aside, and how I feel guilty about it because I know it’s problematic.


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