Along with many of you, I have watched debates unfold in many states about medical aid in dying (MAID) bills. One such debate is raging anew in Connecticut, and what is happening there seems typical of how the debate has gone in state after state that has considered such laws.
Those favoring MAID rightly ask for the right to choose how they die when they have a terminal illness. One of those opposing, disability advocate Kathie Ludlum, asks in a May 2, 2021 letter to the editor of the Hartford Courant: “First, isn’t it more compassionate to provide a dying person with support, affirmation of dignity and first-rate pain-and-symptom management than to create a society in which ending one’s own life is seen as the highest good?”
This is a serious question, but its presuppositions should be examined. No one should be arguing that appropriate medical care is either more or less important than a right to decide how to hasten one’s death to avoid unwanted suffering. Excellent end-of-life care and choice in dying are equally important benefits in a society committed, in Ludlum’s phrase, to the highest good. Both should be the right of every human being. Ludlum’s argument demonstrates the either/or logical fallacy; it poses a false dilemma.
Opponents of MAID laws rightly advocate for the best end-of-life care that is available in an advanced, modern society. Such care should include the best palliative care that we know how to provide near the end of life, as well as throughout life. It is unconscionable that, without adequate health insurance, such palliative care is often not available, especially to those who are disabled and rely on Medicaid. Those of us who support MAID laws should always also support excellent medical care for all at all stages of life.
But those who use MAID laws nearly always have adequate health insurance and seek to use MAID to avoid a death that may cause them both physical pain and emotional anguish. They may not want to linger for days, weeks, months, or years unable to live life on their terms. Once their financial and personal affairs are in order and they have said their goodbyes to loved ones, they don’t want to be left without meaningful life, as they define it, for whatever period of time remains for them.
Ludlum was responding to a previous letter in the Hartford Courant written by Paul Bluestein, MD, FACOG, who asked this question to opponents of death with dignity: “After more than 20 years, do you have no compassion, no empathy, no sense of decency?” In its context, referring to the 20-year effort to pass a MAID law in Connecticut, the question is appropriate and reasonable. Taken out of that context, the question can be imagined as suggesting that opponents of MAID are not compassionate people. This is not what Bluestein meant, nor has this been my experience with MAID opponents, except with regard to MAID.
Some other issues raised by Ludlum demonstrate irrelevancies and make-weight arguments. For instance, she complains that death certificates don’t show the cause of death as MAID, but show cause of death as the underlying terminal illness. I see no reason why this should matter. It matters only to those who have rigid notions about right and wrong and the “truth,” who complain that MAID laws are deceptive because they don’t designate MAID as suicide.
Death certificates are private documents in most states, at least for many years after death, during which time only next of kin can legally obtain a copy. Family members likely know if MAID was used to hasten death. Cause of death should not be important to outsiders. It is none of their business, nor is it a moral issue to most people. What is a moral issue is denying someone choice over their own lives and their own deaths.
Hastening death in the face of debilitating illness appears to affect a relatively small number of people. In recent years, the US has had about 2.8 million deaths a year (not considering the recent year of the COVID-19 pandemic). Most deaths were due to heart failure; cancer; accidents; chronic lower respiratory diseases; stroke; Alzheimer’s disease; diabetes; nephritis, nephrotic syndrome, and nephrosis; influenza and pneumonia; suicide, in that order.
By my calculations, though based on inadequate data, those who hastened their deaths in 2019 using MAID laws, inert gas, or VSED, are no more than 2,000 people, not including people who use self-help methods on their own. But even if we double that number, there were far more people who took their own lives for other reasons. For example, suicides in 2019 are recorded as 47,511 and may include some people who were hastening death in the face of terminal illness or irreversible debilitating conditions.
Which is the greater problem, suicide or those seeking to die on their own terms by their own choice near the end of their lives?
Few people believe that “ending one’s own life is seen as the highest good” in society. There are many more important social values around issues of health care, education, food security, and housing, to name a few. Opponents of MAID should not continue to distort the positions of MAID supporters, and MAID supporters should not cast aspersions on MAID opponents who make reasonable suggestions to strengthen MAID laws. But MAID opponents rarely offer constructive ideas for improving MAID laws because of their unrelenting opposition to choice at the end of life.
If some disability advocates fear that MAID will be forced on them or they will be coerced into using it, those fears should be discussed. MAID laws have been designed to prevent forcible and coercive participation. We need data and reliable, verifiable evidence to demonstrate that the laws are failing in this regard, not hypothetical imaginings.
The truth is that every dying person I have ever talked with does not want to die; they want to live. But what is more important to them is dying, if they must, on their own terms. No one else has the moral right to decide those terms.
Lamar, Excellent piece as usual. I just never understood some of the disabled being so strident in their opposition to right to die laws. Way back in 1998, when the annual Hemlock conference was held in Ann Arbor, I was in the hotel helping with security when the Not Dead Yet folks stormed the lobby. We managed to get them stopped before they could reach the meeting room. During the standoff, and as they were being arrested, I had conversations with several of them. The discussions stayed civil but they wouldn`t budge in their opposition. The main theme seem to be, with those several anyway, that the laws would pressure them to end their life`s early. No amount of talk of choice by me swayed them one bit.
Covid-19 has brought us a different kind of death, the kind that took my wife last December, dying without loved ones able to be present. We live in senior housing; I in the independent unit and her in the assisted living unit. The unit got hit hard by the disease and the last time I was able to be with her in her apartment was 11/23/20 because that unit locked down the next day. She had Parkinson`s disease and was weakened by that so when she tested positive on 12/15/20 she died exactly a week later. The facility did allow me and our three daughters in (wearing full PPE) when hospice declared her “actively dying” the day before she died. Unfortunately she was comatose by then and did not respond to our voices (we weren`t allowed to touch her). As you can imagine, not being able to be with her was torture. I and thousands around the country and world endured that torture.
Forgive me for going on so long. Guess I needed a place to say all that.
Bernie, I am so sorry for the agony your family experienced during the Covid era death of your wife. I wish I could change that.
This essay is beautifully written and full of compassion, wisdom and discernment. I salute the author, Lamar Hankins!
I enjoy reading and considering the various points of views and arguments, perhaps in preparation to sharing my thoughts with others. This one is so good, to consider the false dilemma, the forced either/or consideration. And, I continue to wish to emphasize the importance of choice. If a person wants to end their life, how does it serve society to prevent that? How is some political/bureaucratic/cultural goal superior to the intrinsic right of a human being to own and manage and control their body and its life?
As usual, I appreciate Lamar’s compassionate logic. I also appreciate trying to “build bridges”–on this topic and many more.
• We are awash in false binaries. Everything is positioned as either/or. It’s so tiring.
• Regarding causes of deaths, one that is *never* included: https://participatorymedicine.org/journal/opinion/commentary/2013/04/24/it’s-time-to-account-for-medical-error-in-“top-ten-causes-of-death-charts/
Not Dead Yet (NDY), a so-called disability rights organization, has haunted us in rude, abusive ways for years. I first encountered them on the Supreme Court steps in 1997 when Kathryn Tucker and Lawrence Tribe, representing Compassion in Dying, argued to uphold the rulings of the 2nd and 9th circuit that there is a constitutional right to an assisted death. NDY was well equipped with buses that got them there and signs visible to the international media. They wheeled their chairs into our Hemlock of D.C. sign carriers and were rude and abusive. I don’t think it was their doing, but the Supremes ruled 9-0 that, NO, there was NO constitutional right in that important case.
NDY appeared a few years later in our Hemlock USA offices in Denver, chained themselves to desks and had us resort to their favorite tactic, being carried out in their wheel chairs at noon when everyone is outside for lunch. They used a similar strategy at a Harvard graduation when a symposium on the pros and cons of assisted dying was being debated. They protested until the police carried them out on their wheel chairs chanting “We’re not dead yet” to a puzzled crowd of Harvard grads and their parents.
Bernie Klein’s reminiscences about bodily keeping them from disrupting our annual Hemlock meeting in Ann Arbor in 1998 are right on. I remember him putting his body between the aggressive NDYs and the room where we were meeting, having had experience with the anti-abortion protestors where he volunteered.
I had the dubious pleasure of their company again at Jack Kevorkian’s trial in Michigan in 1998 when about 40 of them spent the week of the trial appearing every day, chanting in the halls, packing the small courtroom, and hogging the press at the end of the trial day. I was the only RTD person there to counter their arguments to the media and to get counter arguments and to state our position to the NY Times and other influential journalists.
They have shown up at FEN meetings in Chicago (their home base) and made a spectacular appearance at the World Federation conference in 2016 in Chicago where they actually stopped the elevators by hanging a huge banner from the top floor. One thing that’s never happened is a rational debate between NDY and a RTD organization, or between NDY and other disabled people who oppose their views.
Many in the disabled community would demand the same rights as those in the able-bodied world, including the right to a peaceful death on their own terms. There is great expense involved in their activities and I’ve always wondered who’s paying the bills for them to show up and do their antics. And from where are they getting their information? I suspect that people like Wesley Smith, a right to life fanatic, is supplying the latter, and maybe the former — from his religious connections.
I think we could all be on their side if there were evidence that assisted dying were being offered to disabled people who did not jump through the same hoops as the rest of us. But this is not happening although they continue to represent a well-financed and seriously misled group of opponents.