“It’s about you”: Maggie Karner urges fearless debate on assisted suicide

I doubt that Maggie Karner rang in the new year thinking she was going to be asked to speak at a conference against assisted suicide. She probably didn’t foresee the suicide of Brittany Maynard or the very well-publicized media campaign that went along with it. She certainly didn’t expect to be diagnosed with a brain tumor. Yet there she was in front of me at the recent East Coast Conference Against Assisted Suicide, speaking quietly but without hesitation.

Maggie Karner, speaking at 2014 East Coast Conference Against Assisted Suicide (E. Kolb photo)
Maggie Karner, speaking at 2014 East Coast Conference Against Assisted Suicide (E. Kolb photo)

She’s as compelling a speaker in person as she is in her now-famous video message to Maynard, made in an unsuccessful attempt to dissuade Maynard from suicide. As conference host Alex Schadenberg said after her presentation, “Maggie is a gift for us.” That “us” goes far beyond the people who were in the room at the time.

“I’m no expert. Just me.”

Self-effacing but not shy, Karner began by advising her listeners at the conference, “I’m no expert. Just me.” She was diagnosed in April with glioblastoma, the same type of brain tumor that beset Brittany Maynard. She recorded her video message to Maynard with that common experience in mind. She found after her video went viral that her cancer was the one thing some news reporters found relevant in her message.

She described a recent interview she did via Skype with a news outlet in Bogota, Columbia. “It turned out to be an informal debate, and they didn’t tell me that. On the air with me was the communications director for Compassion and Choices [the pro-assisted-suicide group], who spoke Spanish, of course. I don’t. And a pro-euthanasia doctor from Miami, who also spoke Spanish. So I’m the only white gringo there who didn’t speak Spanish. One thing the producers and editors all mentioned was that they wanted to interview me because I had the same terminal brain cancer diagnosis [as Maynard], and apparently that made me qualified to speak on this topic of physician-assisted suicide. I guess they were looking for that emotional right hook as the media is wont to do.

“But that left me wondering, does that mean that anyone without a terminal diagnosis can’t express their opinion on assisted suicide? Even after all the TV interviews and YouTube hits on the video to Brittany, I still got lots and lots of tweets and comments that basically said ‘who are you to judge her?’ Even with my brain tumor qualifications. So I guess that’s what our post-modern society has left us now: if you have an opinion on something, apparently you are judging the people who have a different opinion, and [I should] just shut up.’ What happened to the great free American marketplace of ideas? What happens to vigorous scholarly debate with issues that affect our whole society? I guess you can only have an opinion on something now if you’ve lived through it, felt its wrath, or walked in its shoes. Because it’s all about feelings. If you have evidence on the positives or negatives of something, that apparently doesn’t matter. The only thing that matters is how you feel about the issue and whether people like how you said it.”

“It’s a public policy issue … it’s a moral issue”

Maynard’s decision to commit suicide was made with the cooperation of the assisted-suicide advocacy group Compassion and Choices. “Which leads to the heartbreaking videos of Brittany, made by Compassion and Choices, formerly known as the Hemlock Society. Those were up-close glimpses into her personal agony and her suffering, and that contrasted of course with the beautiful young energetic newlywed she was just a year ago. Of course we want her to feel better. The message we’re getting is ‘Whatever she requests – after all, who are WE to turn her down? We shouldn’t judge.’

“But here’s the thing: it’s not just about Brittany. It’s not just about me. What about anyone else with a terminal illness or disability? It’s about all of us. Her videos took one person’s very real, very tragic life situation and tried to fit it into a narrative that applies to all of us. And that leads to that old saying that judging on the basis of the hard cases makes really bad law.

“This is a public policy issue and it deserves vigorous debate from ethicists and experts. It’s a public policy issue, just like Obamacare or the Keystone pipeline or any of the other things that are on the Hill now. And it’s a moral issue that affects what we choose to look like as a civilized society. If you’re a Christian like me, it’s also a huge spiritual issue directed by our Lord. But it doesn’t have to be a spiritual issue. There’s enough meat on the bones of this topic just as a social and policy issue that you could chew on it for years.”

Call it what it is

Karner doesn’t mince words about the dangers of short-circuiting public debate on assisted suicide. “Compassion and Choices apparently doesn’t want a reasoned public debate on this issue. They want people to react emotionally. Proponents of assisted suicide and euthanasia want to capitalize on emotions, and more importantly, they want to change our vocabulary. You’ll notice that Brittany refused to call what she did suicide. She didn’t like the baggage that came with the word ‘suicide’. She preferred to call it ‘death with dignity’,” as Karner indicated quotation marks around the term.

“But that’s just an illusion. We have to come to terms with what this really is – with the fact that assisted suicide, let’s call it what it is, affects others, and not just those close to the self-appointed victims. It affects especially the weak, the disabled, and the most vulnerable. Because how long will it be before the right to die quickly devolves into the duty to die? What does this mean for all who are elderly, or disabled, or just wondering if they’ve become a burden to the family?

“And let’s look just for a moment at what this does to the patient-doctor relationship. I was diagnosed last April, and to this day my doctor has not given me any kind of a timeline for my disease, on purpose. He wants me to live without adding a timeline which would essentially be a monkey on my back to add to the constant stress that the cancer diagnosis brings. We all have a timeline, really. Everybody’s got a timeline. We’re all gonna die someday. My doctor made sure I knew the general definitions of glioblastoma, the high recurrence rate and the low survivability, and he looked at me seriously and told me to do the things now that I enjoy or that are meaningful to me. But he refuses to speculate on me, because I’m an individual, and every person deserves the right to fight.”

Beyond cultural and medical concerns looms the specter of cost control for patients with difficult prognoses.“What if our fragile overburdened health care system decides that [treatment] is not in our society’s or the third-party payers’ interest? That to be more economically expedient, they recommend suicide pills instead of chemo? You see that already happening. That’s why our country has to continue to expand efforts to increase the availability of home care early, not just as an afterthought. Early access to hospices and palliative care, and a continued expectation that even when we are at our weakest, the strong arm of the state will be there to protect and defend our choice for care – not to offer suicide as a false choice of empowerment or a false sense of control or illusion of control.”

“Don’t ever let anyone tell you that you can’t have an opinion”

Karner’s cancer diagnosis brought her attention this year, but she insists that her health isn’t what gives point to her message. “My whole point today is that I have a brain tumor. So what? That doesn’t qualify me any more than you to speak about the danger to our society that assisted suicide poses.

“Don’t you ever let anyone tell you that you can’t have an opinion on this because you haven’t been through it. Today, you’re learning the information you need to have an opinion and to express it, without all the emotional baggage that Compassion and Choices wants to interject into it. This topic isn’t just for folks with an unfortunate diagnosis to decide. Not just people like me and Brittany. This topic of assisted suicide needs to be about every single one of us. It’s about all of us in our society. It’s about you.”

 

 

 

“To life!” Maggie Karner appeals to suicide-minded Brittany Maynard

Brittany Maynard may or may not take her life soon, in a planned and deliberate manner, rather than endure life with cancer. She’s been publicizing her plans, with help from the old Hemlock Society that now goes by the more serene name “Compassion and Choices.”

Maggie Karner, a Connecticut woman living with the same kind of cancer, has written an open letter to Maynard. She reads it in this video. Share this far and wide. Maynard’s story has gone all kinds of viral – print, video, social media. Karner deserves no less.

(h/t Family Institute of Connecticut and Cornerstone Policy Research for bringing this to my attention.)
 

Ahead of hearing on CT assisted suicide bill, a few informative links

Connecticut legislators are scheduled to hold a public hearing in Hartford Monday, March 17, on HB 5326. The bill would legalize assisted suicide.

Among the groups that have already announced their opposition to the measure are Second Thoughts Connecticut, the Connecticut State Medical Society, the Family Institute of Connecticut, the Connecticut Council on Developmental Disabilities,

Here are links with information about HB 5326 and the people who are resisting it.

“Don’t Make Oregon’s Mistake,” by Dr, Kenneth Stevens of Oregon

Coverage by WTNH.com of press conference with coalition of assisted suicide opponents

“Aid-in-Dying Bill Neither Compassionate nor Wise” by Joan Cavanagh, Connecticut resident and activist

 

NH assisted suicide bill, round 1

For hours yesterday, people spoke up against assisted suicide in New Hampshire, essentially saying “hell, no.” The count was impressive. The only decisive count will come from legislators, though, and the outcome is very much in doubt. Here’s this morning’s Facebook post by a committee member, referring not only to HB 1325 but to a second bill, HB 1226, to set up a committee to study end-of-life decisions

“NH Voters: If you are concerned with end of life decisions and you are against Assisted Suicide, please send e-mails to the House Judiciary Committee, flood our in boxes. We had two public hearings yesterday on the subject and some committee members are actually planning on voting for this to pass. NO ONE spoke in favor of these two horrific bills, but plenty of people spoke out against it. Unfortunately, some of the speakers were from out of town and most e-mails have come from out of town. Their thinking is that since no one is speaking out in NH, it must not be something people are concerned about, so let’s pass it…… The link is HouseJudiciaryCommittee@leg.state.nh.us. Thank you!”

The setting for the hearing

Too much was going on at once yesterday. Two hearings, only a few yards apart in Concord’s Legislative Office Building, and I had to choose. I went with door #2. Over an hour later, first round of business done, I hurried to where the House Judiciary Committee was having its hearing on HB 1325.  I hoped I wasn’t too late.

I could barely get in the door.

There was the committee, seated around its big U-shaped table taking up two-thirds of the room, with no one aside from House staff permitted to stand along the walls. This is the standard set-up for New Hampshire House committees. In the remaining third of the room, the two rows of seats were full, with more people standing in clusters at each end of the rows. When I managed to squeeze into the room, I became the de facto doorkeeper as people entered and left.

I was so wedged in that I couldn’t reach my phone or use my tablet, so the world had to get along without my livetweeting (and at last report the world was getting along fine without it). Just as well, since I’d been using the hashtag #hb1325, which someone later pointed out to me was the same hashtag used for a bill in Colorado on a different subject. In the future I’ll use #noPASnh (with PAS standing for physician-assisted suicide).

Some of the testimony

I had earlier provided the committee clerk with the testimony I had prepared on behalf of the New Hampshire nonprofit organization for which I work. The committee members will see this, even though I didn’t testify in person. The core of the testimony is here:

Nothing is more certain to inhibit support for palliative- and supportive-care strategies than to make physician-prescribed death a treatment option. Pain management, respite care, and adaptive technology can require complex, time-consuming effort. Taking a handful of pills is cheap. The negative message to vulnerable, depressed individuals would be unmistakable.

I recognized friendly faces in the crowd, including legislators who have worked for years to resist assisted-suicide legislation. I also saw many people I didn’t know, and I could only hope they were there to protest the bill. I later heard from a committee member that they were indeed opponents – and articulate ones, too. Two of them posted their testimony online via links on PRWeb. They’re worth quoting, but I heartily recommend you go to the PRWeb link to read the statements in full.

From John Kelly, on behalf of Not Dead Yet and Massachusetts Second Thoughts:

We were the progressive voice in Massachusetts that defeated the assisted suicide ballot question.  Our opposition is based in universal principles of social justice that apply to everyone, whether disabled or not….We chose our name Second Thoughts because we find that many people, once they delve below the surface appeal of assisted suicide, have “second thoughts” and oppose it.  In Massachusetts a month before the election, 68% of Massachusetts voters supported the ballot question.  But upon closer look at the real-world threats the legislation posed, voters had serious “second thoughts.”  …

There is nothing in this or any other assisted suicide bill that can protect people who are being abused.  Every year in New Hampshire, it is estimated that there are over 26,000 reported and unreported cases of elder abuse.  No independent, disinterested witness is required when the lethal dosage is taken, which means that the stipulation that someone “must” self-administer the drug is merely a recommendation.  These bills take no notice of how self-interest can motivate family members and caregivers.  Because of the typical provision in these laws that death certificates list the cause of death as the underlying illness, investigations are foreclosed….

HB 1325 uses a definition of “terminal condition” that directly threatens the lives of me and many of my disabled friends.  Section 13 reads:“Terminal condition” means an incurable and irreversible condition, for the end stage for which there is no known treatment which will alter its course to death, and which, in the opinion of the attending physician and consulting physician competent in that disease category, will result in premature death.

The day this bill goes into effect, thousands of people will be instantly made eligible.  For example, my quadriplegia constitutes “an incurable and irreversible condition.”  It has “no known treatment,” and likely “will result in premature death.”  This bill would authorize a New Hampshire doctor, whom I saw “regularly,” to validate temporary feelings of being a burden as being worse than death.  Legalizing assisted suicide sends the wrong message to anyone who depends on caregivers, the message that feeling like a burden is not only an acceptable reason for suicide, but a justification for our health care system to provide the lethal means to end your life.  We are not better off dead.

From Stephen Mendelsohn of Second Thoughts Connecticut:

This bill, with its expansive eligibility targeting a wide range of people with long-term disabilities who are nowhere near death, morphs New Hampshire’s honored state motto, “Live Free or Die” into an ableist obscenity: “Live Nondisabled or Die.”… 

Let us remember that people in Oregon and Washington [where assisted suicide is legal] are killing themselves not because of pain, but because of fear of disability, because they view needing assistance with eating or toileting as a “loss of autonomy,” a “loss of dignity,” and a “burden” on others [according to Oregon’s 2012 report on the Death with Dignity Act]….

As Oregon’s experience shows, death is always the cheapest “treatment.”  Barbara Wagner and Randy Stroup found that out when Oregon Medicaid refused to pay for chemotherapy, but offered to pay for lethal drugs so they could commit suicide under that state’s “Death With Dignity Act.”…

And what message does this legislation send toward those contemplating suicide?  We constantly hear the six-word slogan from proponents, “My Life. My Death. My Choice.”  If “my death” is “my choice,” what message are we sending to an autistic or LGBT teenager who is being mercilessly bullied?  After all, victims of bullying also experience “severe, unrelenting suffering.”  Why even have suicide prevention? … Let us reject HB 1325 and instead work to build a world where no one feels they ought to die merely because they cannot do everything for themselves and instead receive blessing from others, whether they may have days, months, or many years of life ahead.

When I arrived at the hearing, Margaret Dore was speaking, trying vainly to compress extensive testimony into just a few minutes. It’s a fact of life that even when a committee chair goes out of her way to be accommodating, as did Judiciary chair Marjorie Smith (D-Durham) yesterday, all those who testify late in a hearing bear the burden of everyone’s impatience. Dore is an elder-law attorney from Washington state, and she has come to New Hampshire before to fight other assisted suicide bills. Her experience with her own clients has thoroughly schooled her in the risks of abuse inherent in any law that makes physician-prescribed death just another medical option.

The hallway conversations – and what must be done next

Before the hearing began, I spoke with a veteran legislator from the Judiciary committee. He was not optimistic. “Lobby the Senate. Now.” I raised an eyebrow (perhaps two) and asked for his count of the votes on the committee. He declined to elaborate.

Another committee member caught up with me after the hearing and filled me in on what I had missed. She said the turnout by anti-1325 forces had been great. Then this morning, she wrote the warning with which I opened this post. As if the truth changes at the state line … but I appreciate her candor.

Yesterday, a lot of people did a good day’s work. I wish it were enough. Instead, it’s only round one. If this gets through House and Senate – and I concede nothing at this point – it may come down to a veto by Governor Maggie Hassan. Hassan has not addressed this bill directly, but she did veto a bill last year for an end-of-life study committee, introduced by an assisted-suicide supporter. At that time, she said our focus should be “on helping all of those in our society to fully live their lives with the dignity that they deserve.” That sounds promising.