Jack Kevorkian: The Elephant Is Still In The Room

Posted by Dia in Living and Dying and tagged with assisted dying, Doctors, killing, Talking about dying June 6, 2011

May 26, 1928– June 3, 2011

Jack Kevorkian, the outspoken, determined, abrasive champion of physician-assisted suicide died last Friday in a Detroit area hospital. He was 83 years old and died of natural causes. He took on one of the most thankless jobs around…trying to get people to actually talk-and-do something constructive about how we die. I’d like to sincerely honor him for his efforts in that direction, however controversial his methods, as well as wish him a smoother journey going forward than he had while he was here.

May you rest in peace, Dr. Kavorkian. Thanks for having the courage to try and do something. You were braver than most.

The tone of the articles I’ve read so far is all over the map. A few roundly condemn him, a few unapologetically celebrate him, most fall somewhere in between. And I guess that’s appropriate considering the terrifying nature of the subject he tried to force the American public to face and address. This quote from The New York Times article summed it up best for me:

But Jack Lessenberry, a prominent Michigan journalist who closely covered Dr. Kevorkian’s one-man campaign, said: “Jack Kevorkian, faults and all, was a major force for good in this society. He forced us to pay attention to one of the biggest elephants in society’s living room: the fact that today vast numbers of people are alive who would rather be dead, who have lives not worth living.”

(Well, I’m not sure about vast numbers, but certainly more than there should be.)

Personally? I admire the man for his bulldog tenacity in trying to make us look at how we treat those who are dying. Back in the 90’s the terminally ill were holding the very shortest of straws, and really, somebody had to stand up and fight for them. Kudos to Jack for being willing to put the target on his back.

But as far as his solution of physician-assisted suicide is concerned, I tend to lean more towards the view of Ira Byock, the Director of Palliative Medicine at Dartmouth–Hitchcock Medical Center and one of the most powerful voices out there calling for more aggressive care of the terminally ill. In a 1994 paper he said that, while Kevorkian addressed the right problem, he proposed the wrong solution:

The problem is that of unmet suffering – indeed, unaddressed suffering – among many of the terminally ill in this country. Kevorkian deserves credit for loudly calling attention to this situation in a manner that the public – and the medical profession – finally can no longer avoid.

…This regrettable frequency of uncontrolled symptoms exists because of a critical deficiency of medical education as well as a lack of commitment on the part of established medicine to do whatever is necessary to alleviate the distress of the dying. The requisite knowledge, medicines, techniques and technology exist; they are simply not being applied. Physicians who do not aggressively respond to anguish among their dying patients deserve the sternest professional sanctions.

I think that the main thing Dr. Kavorkian was fighting for, access to a humane death, has been accomplished with the advances we’ve seen in hospice and palliative care in the last couple of decades. In hospice care there are already established protocols in place that allow the possibility of medicating a dying person enough to successfully control their pain and suffering, even if it involves death as a possible outcome. (That’s a whole other blog post that I’ll tackle soon.) For now, the biggest problem I see is that the majority of people still aren’t using hospice and palliative care services anywhere near enough.

To address this problem I’d like to see more aggressive steps taken to:

1) see that both hospice and palliative care services are made more universally available,

2) get more doctors to recommend their use earlier in the process, and

3) educate the general population on what hospice and palliative care really do so they’ll more readily turn to them when the appropriate time comes.

The conversation about dying in this country has come light years since Jack Kavorkian first forced us to start talking, but overall the topic remains an elephant looming large and untended in the room.

Personally, the idea of legalizing assisted-suicide makes me a little nervous. It’s not a moral issue for me, it’s a social one. As David Callahan mentions in The Troubled Dream of Life, we already have three other ways we get to legally kill one another (war, capital punishment, and self-defense) and for all our sakes, I’d rather be shrinking than growing this list. Social fabrics are fragile under the best of circumstances. I can’t help but feel it would be wise to proceed with caution and have a much more open, reasonable, and in-depth public conversation before we decide.

copyright Dia Osborn 2011

Jack Kavorkian Dies at 83, Slate Magazine

Letting Go, The New Yorker

Why The Disabled Are Worried About It

Posted by Dia in Uncategorized and tagged with assisted dying, disabilities, Disability, Doctors, stereotypes, Talking about dying September 17, 2010

In last Friday’s post I mentioned that, much to my surprise, the disabled seem to have good reason for worrying about assisted dying/assisted suicide (I’m going to shorten it to AD/AS here…) legislation being passed. In this post I’d like to take a look at why.

It started with the whole Death Panels phenomenon. After I wrote Christmas Trees and Death Panels: How Fear Sets A Snare a few weeks ago, a thought kept nagging at me. When Sarah Palin first threw out that now infamous term, she claimed that the government was planning to set up medical boards to decide whether her child with Down Syndrome would be allowed to live or not. I initially thought it was a (pretty brilliant) piece of political misdirection and dismissed it. (Admittedly, my opinion of politicians is at an all time low. The bias runs deep. If their lips are moving, I doubt it.) Nonetheless, the claim reminded me of different accounts I’ve read over the years of the historical treatment of the physically disabled and mentally ill, and as I recalled some of those horror stories I began to wonder if there might not still be some deep psychic scars hanging around in our group subconscious. It wouldn’t be unusual. Deep fears based in old realities do tend to die slowly. Could some element of genuine fear also be coloring Ms. Palin’s political ploys? And was it an echo of that same fear that inspired such an overwhelming response in the American public?

(Who would have thought that my old fascination with mental asylums, body snatching, and medical experimentation on the terminally ill might eventually offer constructive insight into the deep, subconscious fears about disability and dying that are still active today? Go figure. Let that be a lesson to follow one’s passion, however odd it seems. )

In terms of their treatment at the hands of a larger society, historically the disabled have often drawn the short, shorter, and shortest straws. Some of the accounts are heinous. For example, in the Victorian era, in the early days of asylums and workhouses the disabled (both physically and mentally) were often segregated and abandoned in abysmal conditions; shackled in dungeons with no light, clothing, beds, or heat, and left to languish in their own filth. In addition, because there was no meaningful legal protection, they were sometimes targeted for questionable medical experimentation by unscrupulous doctors. Not to mention that, when it came to committing someone for mental illness, the definition of insanity was…well…insane. Families could commit just about anyone to an asylum for reasons as simple as disobedience (in women) and unruliness (in children.)

It was a traumatic age to rank among society’s most vulnerable and, while conditions have improved dramatically in the western world over the last century (not always so rosy yet in pockets of the developing world though,) the old horror stories have nonetheless carried forward to today. There are still families handing down tales of not-so-distant ancestors who were locked up in these places, and who doesn’t get a delicious chill running down their spine at the use of old asylums as settings in classic, horror movies?

Kings Park Psychiatric Center, New York (Building 93)

These stories from bygone days are still lurking deep in our group unconscious and contributing to the fear and stereotypes about disability and its treatment that exist today. But up until recently I assumed those fears were dated and irrelevant. Imagine my surprise then, to discover there are still compelling reasons for the disabled to not only fear segregation and discrimination, but possibly euthanasia as well.

After assuming that Ms. Palin’s stated fear for her son was not entirely political, I dug a little deeper. I did a quick search using terms like disabled, fear, and assisted suicide and found this publication put out by RADAR: The Disability Network in the U.K. It addresses concerns about proposed legislation for assisted dying in the terminally ill and…please, let me first just say that in a media world as full of hype, spin, and misrepresentation of the facts as ours is currently, this little bulletin is a treasure. It’s heartfelt and passionate, but still somehow manages to be respectful, and I read it a few times just to bask in that little miracle of miracles.

But aside from that, one piece of information I learned there shocked me. It turns out the disabled have a right to worry about legislation sanctioning AD/AS.

Included in RADAR’s publication is a case study concerning a woman named Jane Campbell, diagnosed at birth with spinal muscular atrophy and not expected to survive her first year. Best I can figure, at the time of this publication she was about forty and, in spite of extensive disability, living a dynamic, happy, satisfying life as a national advocate for the disabled. However, during a hospitalization for severe pneumonia in 2003 she encountered an unconscious stereotype held by members of the medical staff that could potentially have proven fatal to her. Her experience is important because it crystallizes some of the very real danger that AD/AS poses for the disabled, and I think it’s something that all of us healthy, strapping people need to consider carefully.

Evidently, while in the hospital she was approached by two different members of the medical staff overseeing her care who told her that, in the case of respiratory failure, they assumed she wouldn’t want to be resuscitated with a ventilator. She was at first surprised, and then alarmed, because they didn’t seem to believe her when she insisted that, no, she wanted to continue to live very much, even on a ventilator. Her husband eventually had to race home and collect photos and other factual evidence to convince them that in spite of her disability, she did indeed enjoy a very high quality of life. Unlike an equally young but non-disabled patient, Jane found herself in the position of needing to prove that she still had every reason to want to live.

I imagine it was terrifying for her. Medical personnel often have to make tough calls that influence whether a patient will survive a crisis, and if they believe that the patient doesn’t want to survive it will almost certainly influence their decisions. Jane was confronted with medical professionals who, because of unexamined stereotypes about her quality of life, automatically assumed that she’d prefer to die. More frightening for her was the fact that these stereotypes acted upon them so powerfully they continued to doubt her, even after she initially told them it wasn’t true.

Now some might suspect Jane was projecting her own fears onto the staff. I might have too, except that I instantly recognized the kind of situation described because I was in it once myself, only I was on the medical side. When Maggie, a woman who’d been left as a quadriplegic by polio sixty years earlier, was first referred to our hospice with terminal cancer, I was laboring under the same flawed assumption that she must be relieved. When I first entered her home I thought surely she must be looking forward to her long suffering coming to an end.

Nothing could have been farther from the truth.

I found a woman devastated by the news. She loved her life and for good reason. Surrounded by a devoted, supportive husband, children she loved, grandchildren she adored, and a wide network of extended family and friends, she had at various times produced an educational TV show and managed a branch of the state tax commission for more than a decade. She was sharp, beautiful, disciplined, optimistic, graceful, and dynamic…and she was not, I repeat not, ready to die.

It was a real eye opener for me. The reason stereotypes are so damn successful is because, without any real life experience to refute them, they feel true. It isn’t until one finally runs aground on the rocks of some contrary evidence that they crack open, revealing the blind assumptions they’re based on and allowing us to finally begin to question them. Maggie was the rock that split my hull. She was severely disabled but, where her desire to live was concerned, that was totally irrelevant. While her husband told me after she died that of course she was relieved to escape the limitations placed on her body, that in no way translated into meaning that she wanted to die. Evidently, wanting to be free of a disability and wanting to be free of life are not the same thing.

Go figure.

Now, an important question to ask is, does any of this really matter to those of us who are not disabled? Clearly, this stereotype is potentially dangerous for someone who is but for someone who’s not, other than arousing our deep humanitarian instincts, is it pertinent? Will it ever affect us? Do we have any skin in this game?

You bet.

Here’s an important point to keep in mind; eventually anyone who doesn’t die instantly is going to experience what it’s like to be disabled. Because the dying are a subset of the disabled. When we begin our final journey we all enter the world of steadily decreasing ability and, to varying degrees and for however long it lasts, we each get to feel what it’s like to become helpless, dependent, weakened, and vulnerable. And when that happens all those non-pertinent stereotypes about disability flapping around are going to catch our scent and come circling, and you better believe they’ll influence the people making critical decisions for our lives. It won’t matter which side of the AD/AS argument any one of us falls on, whether we’ll be among those who want to live but, like Jane and Maggie, are cared for by people who don’t believe us, or whether we’ll be among those who want to die but who are cared for by people who think we’re no longer competent to decide. Either way, left unaddressed any stereotypes about disability will almost certainly wield power over our self sovereignty.

Now you might think that this alone is a good enough reason to look more closely at the actual wording of any given legislation for AD/AS, and to have some in-depth, follow-up discussion. But Wait! (I say like an infomercial for a new, blender/chopper/shredder/slicer kitchen appliance that one just can’t live without…) There’s more!

But…it’ll have to wait until another post. I’ve already gone way too long already. Next Friday, I’d like to take a look at the possibility that the blind assumption the disabled don’t have any real quality of life may also be a prime factor influencing why some people choose assisted dying/assisted suicide in the first place.

Let’s Have a Chat

Posted by Dia in Uncategorized and tagged with assisted dying, change, Living and Dying, Respect, talking, Talking about dying September 9, 2010

I wanted to take a moment to talk a little about the delicate topic of assisted dying/assisted suicide. There are a lot of places, nationally and internationally, wrestling with legislation and, in my opinion, if we’re going to try and do something as ambitious as legislating death, I think we should make a serious effort to get it right. Because if there’s one thing that everybody agrees on it’s this:

Life is a fragile commodity and the off-switch for it only works once.

The reason emotions are running so high is because the stakes are so big. Legislation affects all of us so it’s critical we don’t leave something this important solely in the hands of politicians and lobbyists. Instead of just playing the voyeur by sitting back and listening to the attention grabbers argue about it in headlines and news clips, we the street people, the regular Joes and Joeinas living out here in the real world, need to educate ourselves more, nose around, dig up hidden angles, make sure we look at both the shining gifts and dark underbellies of every side of the argument. And most importantly, we need to start talking with each other about it.

That’s right folks. I said talking. About dying. To each other, across political, religious, ideological, racial, cultural, economic, and national lines. Believe it or not communication can be a good thing. Done right, it actually makes us smarter than we were before, more informed and knowledgeable, more compassionate and caring. True communication (read: listening as well as talking) not only offers our heads more information, it helps us build bridges heart to heart which, trust me, is something you really want in place when you’re hanging out there on the raw and ragged edge, desperately clinging to someone’s hand while you’re trying to tell them that you really, really want to live…or that you really, really need to die.

This is not an idea we’re talking about here people, it’s the real thing. I’ve been there, I know what it looks like. With hospice I saw both Democrats and Republicans die. I saw the faithful and atheists die. I’ve seen pro-lifers and pro-choicers, rednecks and tree huggers, rich and poor, dark and light die and I’m here to tell you that in the end, all those shallow, gritty, surface labels slough off like old skin and the person left lying in the bed is just one more beautiful, luminous, vulnerable, aching, irreplaceable and longed for human being. Somebody that gave every last one of us a huge gift by surviving this world for as long as they did. Someone who was our companion, whether we knew them or not, and without whom the pocket of the world they were responsible for would have been something a lot less.

We have got to drop the harsh, combative, divisive judgments we keep stabbing each other with if we’re to have any chance of getting this right. Every one of us deserves to have the final word on what’s happening to us and our own body, to live and then die in accordance with what’s sacred, beloved, and true to us. Every one of us deserves to feel safe knowing that nobody will ever, ever, ever try to kill us when we are wanting and longing to live, and conversely that we will never, ever be forced to experience unendurable, unending suffering when we simply can’t bear anymore.

There are valid, important points being made on all sides of this argument that we all need to take into account before any final decision is made. Because if we don’t, some helpless, dying person (actually a lot of helpless, dying people) are going to become the tragic victims of our legislation and if that happens, we will all be responsible for it. It will be all our faults for the simple reason that we didn’t make more of an effort to listen to one another and come up with some truly wise, compassionate, thoughtful, and inclusive solutions.

Phew! Okay. Enough of the soapbox. As you can tell, some things really wind me up.

So, do you find it hard to talk about assisted dying/assisted suicide with people who feel differently than you do? If so, what makes it challenging and what would make it easier? I would dearly love to hear what others are thinking about this whole subject and welcome your comments. Some ground rules though: be respectful, think before you talk, and contribute something valuable to the discussion. (Hint: Personal insights and feelings are valuable. Ranting, blaming, and proselytizing are not. Name calling will be deleted.) And humor is the best!

I’d like to spend the next few posts exploring some of the surprising things I’ve been discovering through my own investigations. Next week: Why the disabled are worried about it and why the rest of us should care.