I love life and I love me, but I don’t want to live like that

July 26, 2014 12:49 PM

Kim's Choice: How One Family Confronts a Genetic Time Bomb. A moving article from the Globe and Mail about Kim Teske's decision to end her life, and a portrait of a family as they gather one last time to say goodbye. "[Kim] has Huntington’s, an incurable genetic disease that combines aspects of Parkinson’s, Alzheimer’s and schizophrenia. At 52, she is still living on her own, but fears that, if she doesn’t act now, she will end her days in an institution. “I love life and I love me, but I don’t want to live like that..... And I have a plan.” Two of Kim's siblings also share the genes for Huntingdon's; of her four nieces and nephews, one has tested positive, one negative, and the status of the other two is not yet known.
posted by jokeefe (41 comments total)

.

for Kim, her family, and all those affected by this disease.
posted by Hermione Granger at 12:56 PM on July 26, 2014 [3 favorites]

Machado-Joseph (very similar to Huntingon's) runs in my family, and some of my relatives have confronted the same difficult decision.

Watching loved ones with this disease, and knowing that it is somewhere in your genes ... well, it's sobering. I can't blame those who make Kim's choice.
posted by Shadan7 at 1:15 PM on July 26, 2014 [4 favorites]

.

My standard advice for a horrible situation.
posted by lalochezia at 1:39 PM on July 26, 2014 [1 favorite]

Damn, to have the strength to just starve yourself to death; amazing and horrible.

It is past time that we helped people with hopeless diagnoses who choose it a peaceful and painless death, instead of forcing one like this on them.
posted by emjaybee at 1:41 PM on July 26, 2014 [15 favorites]

I can't imagine dying over years of a horrible disease like Huntington's and I can't imagine having the strength of will to purposefully starve myself to death. I hope to never have those things become not imaginary for me or anyone I know and love.

Whether they need the medical insurance that would let them throw everything modern medicine can muster at a disease like or they wish to choose the time and manner of their death, everyone should have the right to make this choice for themselves and to be helped through their choice with compassion.

Our medical system in Canada is okay but not fantastic at the extension of life but my god do we need to do something better and kinder for the people who don't want to keep fighting.
posted by jacquilynne at 2:02 PM on July 26, 2014 [3 favorites]

.

My heart goes out to that family.
posted by magstheaxe at 2:02 PM on July 26, 2014

I cannot imagine having the willpower to starve myself. She has my respect and sympathy. We should be able to offer people better options.
posted by theora55 at 2:22 PM on July 26, 2014 [1 favorite]

I admire her willpower for being able to starve herself to death, and her family's bravery at allowing her to do what she wanted, but what a terrible system we have, where you have to suffer so greatly just to avoid suffering even further.
posted by xingcat at 2:42 PM on July 26, 2014 [6 favorites]

.

I cannot imagine having the willpower to starve myself.

I can imagine that she understands what she faces in a way that we cannot and, thus, the short term torture of about two weeks seems preferable.
posted by Michele in California at 2:49 PM on July 26, 2014 [4 favorites]

John Rehm, husband of NPR host Diane Rehm, recently made this choice in response to Parkinson's disease. The show she did the week after his death was one of the best policy discussions I've ever heard on the topic, largely because the "anti" side was not welcomed into her studio that day.
posted by hydropsyche at 3:37 PM on July 26, 2014 [9 favorites]

How long do you wait on science. Supoose you have inherited one of these terminal genetic diseases. At some point you know the symptoms will start and then the decline. You look at 5 year stats and realize it is grim. Yet, Science is progressing, new clinical trials and therapies. How long do you endure it.

Remember at one point with HIV the patients started walking out of the hospices when the anti-retroviral drug therapies started to work. At the same time how much do you allow yourself to hope. The promising clinical trial fails in phase 3 or actually makes it worse. Expectarions rise as a miracle cure appears eminent, but it never comes.
posted by humanfont at 3:37 PM on July 26, 2014 [2 favorites]

I forgot. What is the rationale against euthanasia?
posted by notreally at 4:27 PM on July 26, 2014

Note: I don't agree with this.

In simplistic terms: The rationale is that it's God's decision when to take someone from this Earth, not man's. Euthanasia, by nature goes against God's will.
posted by spinifex23 at 4:39 PM on July 26, 2014 [1 favorite]

Euthanasia, by nature goes against God's will.

So does EVERY medical procedure we partake to EXTEND life. A reliance on "God's Will" would return us to the life expectancies of the Biblical era. WORST. ARGUMENT. EVER.
posted by oneswellfoop at 4:59 PM on July 26, 2014 [18 favorites]

I'm speaking as one who had BOTH of my parents, 20 years apart, experience devastating illness or injury that WOULD have forced them into a lifestyle of dependency they specifically expressed that they didn't want, but who experienced 'complications' that killed them soon after. In fact, one of the doctors treating my father commented "he didn't even have a normal cardiac arrest - his heart just slowed to a stop". A big part of me wishes that, facing the same situation, I could make the same thing happen, but I'd rather have Euthanasia available to me. Because I do not want to be a slave to spiniflex23's god's will.
posted by oneswellfoop at 5:05 PM on July 26, 2014 [1 favorite]

I note that spiniflex23 said they didn't agree with the rationale, was just pointing it out.
posted by gaspode at 5:08 PM on July 26, 2014 [9 favorites]

Euthanasia, by nature goes against God's will.

That's a good reason for you to not choose euthanasia, but not to deny the choice to others.
posted by Evilspork at 5:08 PM on July 26, 2014 [1 favorite]

What is the rationale against euthanasia?

Robert Latimer

Legalized euthanasia scares the hell out of advocacy groups for the disabled, just because of cases like Latimer's: a father decides his 13 year old daughter with cerebral palsy is suffering too much, and euthanizes her. The idea that caregivers might make these decisions for their charges who are unable to advocate for themselves, possibly against their wishes, possibly for less than compassionate reasons, at a time when caregivers already don't get all the support they might need... It's a difficult concern to allay.
posted by fatbird at 5:11 PM on July 26, 2014 [17 favorites]

I sincerely interpreted spiniflex23's "Note: I don't agree with this" to be referring back to the original story, not to what he wrote after. If I was wrong, I apologize, but ALWAYS put your judgment of someone else's opinion AFTERWARDS, please.
posted by oneswellfoop at 5:12 PM on July 26, 2014 [1 favorite]

Such courage in the face of disaster.

.
posted by tuesdayschild at 7:12 PM on July 26, 2014 [1 favorite]

I know I wouldn't have the grit to starve myself, but there are still other means and methods...
posted by BlueHorse at 7:15 PM on July 26, 2014

notreally: "I forgot. What is the rationale against euthanasia?"

The BBC has a summary of arguments against euthanasia that hits a lot of the high points of the discussion. I have a variety of concerns, but I think the Netherlands' model has actually addressed a lot of them (wrong diagnoses, pressure to euthanize from family, shifting of doctors' priorities) and, luckily, we don't have to start from scratch; we can observe systems already in action and see how well they manage to address these concerns.

But yeah, a lot of my personal concerns are around the rights of the disabled, family pressure, financial pressure, issues of mental illness/depression and their interaction with various other diseases and the lack of adequate health care for same, and the lack of adequate palliative care. (I think it probably SHOULD be legal, but with a lot of really careful regulation to protect vulnerable people, which I think in general the Netherlands has done quite well.)
posted by Eyebrows McGee at 7:48 PM on July 26, 2014 [8 favorites]

Unrelated to euthanasia, but This American Life also did a piece on a family with Huntington's and whether or not to test for it - it touches more on the ramifications of knowing in advance than what happens if you have it, but worth a listen.
posted by Mchelly at 7:48 PM on July 26, 2014

I think the statement that the argument against assisted suicide is it is "against God's will" is a little simplistic.

Many people are against assisted suicide because the people being "assissted" are among the most vulnerable in our society - the seriously ill, the developmentally delayed, the elderly, the mentally ill. With our poor track record of caring compassionately for these vulnerable populations, it seems odd that the one right the "healthy" want to advocate for on the behalf of the vulnerable people is their right to end their lives. It is complex because many of the advocates are their caregivers - people who have carried a disportinate burden for years, decades without the emotional and financial support of the broader community. I believe there was a study at one point that found the end-users of assisted suicide tended to be the financially insecure and women, two groups of people that have been socially conditioned to put other's needs before their own and can view their very existence as an unnecessary burden to others. Who among us, after hearing a terminal diagnosis that will consume savings and incur debt (yes, even in Canada with universal healthcare) would not entertain the though: "well, if I kill myself a little early I can stop my family from financial ruin and let them move on faster - I'm going to die anyway"? The quality of life for the seriously ill and their caregivers needs to be elevated before we can truly have a realistic conversation about assisted suicide.

Many people, when talking about assisted suicide, are really talking about a "good death", a gentle death, one as free from pain as possible. That is what palliative care aspires to, but as it is not a funding priority it is difficult to find good care that serves all the people affected by the impending death.

When we care for the seriously ill, treat them as members of our community and not as burdens, support and value the work of caregivers, and offer palliative care to the dying, then we will be in a place to discuss the role of assisted suicide within the framework of providing a pain-free as possible death.
posted by saucysault at 8:02 PM on July 26, 2014 [7 favorites]

It's horrific that it should ever come to self-starvation. I hope publicity like this can help change things in the direction of minimal humaneness. And soon.
posted by edheil at 8:17 PM on July 26, 2014

I certainly agree that we should do all those things, but I don't think we should take away the basic agency of people who are in those situations now to make their own decisions based on the conditions that they personally have to face. They shouldn't have to suffer in order to be used as examples of why the system needs to be better.
posted by jacquilynne at 8:18 PM on July 26, 2014

... then we will be in a place to discuss the role of assisted suicide within the framework of providing a pain-free as possible death.

So, what, in the meantime, people who'd prefer to be allowed a pain-free death with some dignity just have to suck it up? There's no point trying to help them unless the rest of the system is perfect?

It's both fascinating and horrifying to me that a person's right to bodily autonomy is trumped by only two things--one is (sometimes) when they're pregnant and don't wish to be, and the other is their basic right to die. Only one of these things is especially controversial.

We can't compel people to donate organs or allow their bodies to be studied; we can't even use parts of the dead to keep others alive without the prior consent of the dead person. Not wanting your dead body used to help people is, apparently, a perfectly reasonable thing that we have to respect. But if you want to die, that crosses a line and is something that the collective we should stop at any cost.

I have a huge amount of respect for what Teske did, and feel like she was almost impossibly brave. I also feel that it's utterly inhumane that this is what she was reduced to. She deserved better, and so does everyone else who wants to make this choice.
posted by MeghanC at 8:49 PM on July 26, 2014 [11 favorites]

So, what, in the meantime, people who'd prefer to be allowed a pain-free death with some dignity just have to suck it up?

I think you misunderstand my comment; what you describe "a pain-free death with dignity" is exactly what palliative care is. And the goal should be to provide that palliative care to all the seriously ill. Probably, that would also include the option for assisted suicide, but as an option people would choose without emotional pressure from caregivers or financial pressure from themselves or others, or fear of inadequate pain management or isolated, insufficient care. If proper palliative care is the goal, a large majority of terminally ill people can be helped; instead, with resources devoted solely to assisted suicide it will become self re-enforcing that the only "proper" way to deal with terminal illness is either a quick suicide (perhaps months or years before the condition became unmanageable), or a painful, undignified, and costly death without palliative care.

In North America at least, we do not seem to do "death" very well. We don't know how to deal with someone who is dying, we prefer deaths to happen isolated in hospital with "professionals", and we expect grief to begin when the death happens and the grief all wrapped up before the end of the five day bereavement leave from work.
posted by saucysault at 10:55 PM on July 26, 2014 [2 favorites]

we can't even use parts of the dead to keep others alive without the prior consent of the dead person

This must be jurisdiction-dependent. In Ontario, only "yes" answers to the Trillium Gift of Life registry are collected. Almost all next of kin of potential donors are approached and told if there is a yes answer on file. There is no way to convey the no unless the person had previously done so personally with their family. There is not legal obligation of the family to respect a "no" that I am aware of (nor is there an obligation to honour a "yes").
posted by saucysault at 11:05 PM on July 26, 2014

Re: Parts of the dead: my point was that even after someone is dead, and thus has no need of their body, we honor their (and/or their next of kin's) wishes about what to do with the potentially useful parts of the corpse. In the US, anyhow, a donation can't happen unless the person either explicitly opted in or the family volunteers. In some states, the family can override even an explicit opt-in. Opt-out systems (where everyone's assumed to be a donor unless they explicitly opt out) have been brought up in a couple states, but no one's managed to pass one.

Regarding palliative care, the point is still to make people comfortable while they die, isn't it? And I don't think that's enough--even if you're comfortable and well taken care of, some people just don't want to wait things out. For example, Alzheimer's runs in my father-in-law's family. My father in law is a really smart, sharp guy who's said repeatedly that he doesn't want to live like that, no matter what; that he wishes that he could build a bomb that he had to defuse once a year, and the year he couldn't do it, the bomb would go off and take him with it. He could be cared for, made to be comfortable, kept in his own house, etc--and that's still not a life that he'd choose to live. Palliative care does nothing for him--he doesn't want to live like that, no matter how comfortable he might be.

My grandfather was comfortable, well cared for, and surrounded by loved ones right until the end of his life, and he still spent the last several months of it saying that he wished he could just die already, that he hated being infirm. We were all so relieved when he died, not because we didn't love him, but because he'd been so unhappy to be alive by the end of it. He wasn't ill, even, just old, and no longer able to do the things he loved--no amount of care can bring back your hearing or some types of mobility. What do you do when the man who lived for music can't hear any longer, and the arthritis in his hands has left him unable to play the piano that he arranged his rooms around? What do you do when a man who loved birding isn't able to see the birds any longer, or when he can't taste anything at the lengthy meals he used to delight in?

I feel like I've been lucky--my grandfather was a wealthy man with many children, and the care he received was excellent. He was never in pain, the facility he was in was gorgeous, his family was there daily, and his friends were there almost as often. He spent several years in an assisted-living suite, and then, when assistance was no longer enough, moved to a palliative care room. The doctor he'd seen for twenty years was happy to keep seeing him, and he had a small, rotating team of nurses/social workers. It was about the best-case scenario that I could imagine, and it still left him wishing, for months, that he were dead. I completely agree that palliative care needs to be accessible for everyone, but part of that care needs to be allowing people to decide when they'd like to be done with it.
posted by MeghanC at 2:06 AM on July 27, 2014 [3 favorites]

A remarkably brave woman, and determined.

It's absolutely the choice I'll make should I begin to get overtaken by something without a cure -- once the doctor tells me that the show is over, that there is nothing else that medical science can do for me, I'm outta here. Not like I'd run out the door, I'll say my goodbyes and all, but pointless suffering -- not for me.

Alzheimer's ran through my paternal line, my father and most of his siblings suffered it, it came through his mother. I am like hyper-alert to it; I'm 59, so: did I forget where I put my keys because I'm 59; or did I forget where I put my keys because of Alzheimer's; or did I forget where I put my keys because I'm a mope? Could be any or all of those. The thing with Alzheimer's, it's an illness that you've got to act on fast, once you see it coming at you (me, once I see it coming at me I mean.)

You want to read a chilling book, read "Still Alice" about this vibrant, smart, sharp, tough, educated woman who notices that she's going off, and gets that confirmed by a doctor, and she absolutely intends to take herself out before it gets "too late" but then it *is* too late, and she's forgotten to take herself out. Yikes.

I think of one of my uncles, he was so alive, so social, so strong and fit -- he ended up like 80 pounds of nothing but terror. My fathers twin sister, hers was not terror, more the classic that we think of, where she lived in her childhood, for over fifteen years. Twenty years? Could have been. My father made it a long time, up into his early 80s before it began to tear him down, but it went fast once it did. You ever read the stories of how some men, when you have to take their car keys, it just tears them apart, and tears them down? That happened with my dad.

~~~~

I'd certainly use a different method than this woman, I don't have her strength, I don't have her determination -- that woman really was strong If I go it's going to be the bag and helium route; fast, certain, painless, clean. (I wrote about it in that thread, too -- it's really important to me, the right to do as I see fit.) It's annoying to me that I'd not be able to give someone my eyes, the gift of vision. I do carry a card to donate my brain, and that can hold until 72 hours after my death, so there is that at least.

~~~

One of my older brothers went out not eating and not drinking, but not by choice, as this woman did -- small cell lung cancer took him, five months from his DX to his death. They used chemo, and radiation, and the cancer responded, it shrunk back some, or at least stood still, but the minute the radiation was stopped the cancer came right on back, and with a vengeance, too: small-cell lung cancer, it's an old testament kind of cancer, it's vengeful, it'll smite the living shit out of you.

My brother, the bones in his spine were breaking as the cancer ate into them, he had tumors starting all over, and one of those in his throat, and it ballooned, and he could not eat, and could not drink even a sip of water -- it was awful. All he wanted was a drink of water, it was all he could focus on. The last week or so he had hospice there, and high quality pain management (as well as you can manage the pain of bones breaking in your spine, not to mention the psychic pain in it all, the fear, not just of death but of more pain), and who knows, maybe hospice would have helped him die but my brothers religious beliefs wouldn't let him do it even if they would have been willing to help him ease out the door.

All he could think about was how bad he wanted a drink of water, my last conversation with my brother he's in agony, he's crying, I'm crying (I'm crying as I key this in; it hurt and it still does hurt), he's telling me that all he wants is Jesus on the other side of the vale, holding out a glass of cool water.

I love my brother, and his religion made sense to him, and comforted him. But it wasn't too damn comfortable at all those last two weeks especially, that last ten days an ongoing horror movie. I just can't get behind the idea of a god of love that would condemn anyone for stepping out of agonizing pain, pointless suffering. It doesn't square.

~~~~

In simplistic terms: The rationale is that it's God's decision when to take someone from this Earth, not man's. Euthanasia, by nature goes against God's will.
posted by spinifex23 at 6:39 PM on July 26

Humanity has unquestionably one really effective weapon — laughter. Power, money, persuasion, supplication, persecution — these can lift at a colossal humbug — push it a little — weaken it a little, century by century; but only laughter can blow it to rags and atoms at a blast. Against the assault of laughter nothing can stand.
Mark Twain

I'm so grateful that so many are now well aware that so much of religion is a bad joke, a black joke, albeit a very funny one. I'm 59, so much has changed in my time, so many good things have come about, and so many of these changes have come behind laughter at the inanities inherent in some parts of so many faiths. I don't want to take peoples comforts away from them, and religions do comfort people, but it would sure be nice if/when they'll finally see that some parts of those books are, as Twain would call them, colossal humbugs. Who knows, maybe I'll be alive long enough to see that tipping point; I hope so, I'd love to see it.
posted by dancestoblue at 8:59 AM on July 27, 2014 [6 favorites]

And I'm glad that this was in Canada, and not here in the states, where no doubt a SWAT team with fully automatic assault weapons would come busting through the doors and taze her, and taze any family member who wouldn't immediately lay on the floor with their hands behind their heads, and shoot their dogs, and handcuff her and take her to a hospital where she would be force-fed, because they care about her.
posted by dancestoblue at 10:33 AM on July 27, 2014

I'm not clear on where the God I don't believe in expressed that wish. The Old Testament God was vengeful, capricious, often kind of a jerk. The new Testament seems to promise mercy, but just look around.

My former mother-in-law is dying. She seems to have stopped eating or even drinking much water. She has plenty of pain medication, and good hospice care, and her family at her bedside. I'm sorry she has to go, but it will likely be a calm death, and she freely chose to stop treating her condition. That's compassionate. The health care community is starting to figure it out, though it's inconsistent.

Hospice care, like all of medicine in the US, is becoming corporate for-profit, which is really unfortunate. The hospice workers I know have been an amazing gift to many individuals and families.

I worry that people will be euthanized because we don't value old people, because caring for old/ sick/ disabled people is expensive and not fun. Our new corporate overlords are unlikely ot be compassionate. Caring for someone teaches you a lot, though I hate how much of it is forced on women who have to give up their own lives.
posted by theora55 at 12:49 PM on July 27, 2014 [3 favorites]

People are misinterpreting my comment here.

I'm not against euthanasia. I'm for it. People should be able to choose to have a death with dignity and without pain, if they are facing a horrific illness like this. Or other circumstances. People shouldn't have to starve themselves to death to get relief.

I was merely pointing out the rationale that some, particularly religious people, give as a justification to be against euthanasia, and thus vote to keep it illegal.
posted by spinifex23 at 2:47 PM on July 27, 2014 [3 favorites]

Now I got it, spinifex23 -- thank you for clarification, and I apologize about as profusely as I know how to if you've taken offense due to my blunder.

The reason I put it into my comment here is because, as you noted, those attitudes are so damn prevalent in our society; it's a red-hot button issue for me. I'm all about it should someone decide they want to wait death out, suffer it, the process of it, I just can't stand that those attitudes are shoved at everyone else, too.

I owe you one, spinifex23 -- should you ever come to Austin, I'll buy you a coffee, or an ice-cream from Amy's, there on South Congress Avenue -- they have this one dark chocolate ice cream that is so, so rich, and so, so good, it probably should be illegal or something.
posted by dancestoblue at 5:25 PM on July 27, 2014 [2 favorites]

I fear that the advanced medical directive and related documents will end up in the same place as a birth plan.
posted by humanfont at 6:53 PM on July 27, 2014

It's ok, dancestoblue, apology accepted. It's a topic that a lot of people are passionate about, on both sides.
posted by spinifex23 at 10:10 PM on July 27, 2014 [1 favorite]

My husband had Huntington's. He put a gun in his mouth and pulled the trigger. He had the right to decide to end his life, but he deserved a more gentle way of dying.
posted by byjingo! at 9:53 AM on July 28, 2014 [7 favorites]

I'm so sorry, byjingo! I wish you peace, and hope this FPP hasn't been too upsetting for you.
posted by jokeefe at 6:19 PM on July 28, 2014 [1 favorite]

No jokeefe. I haven't been upset by this. I understood why my husband killed himself. I just think it would have been better if he had had a good choice in how to do it. Something peaceful. It has been 18 years now, but I still think of him often and miss him.
posted by byjingo! at 9:11 AM on July 29, 2014 [2 favorites]

I am so sorry, byjingo.
posted by spinifex23 at 11:32 AM on July 29, 2014 [1 favorite]