Life is fatal. Why isn't it easier to die gracefully?
August 26, 2013 1:08 PM   Subscribe

In the event that I have any control over it whatsoever, I want to die well. Recent family events and yesterday's NPR segments (1, 2) on end-of-life issues raise a fresh wave of questions about how to plan now for the best possible end later on. Is there anything in the works that looks like a living will but allows us in our younger healthier years to document the preference "if a, b or c happen, just guide me to the light with morphine"? I want to be able to die as peacefully and (perhaps almost as) easily as my pets can. And perhaps I should reserve this additional loaded question for a separate post, but what the hell: why do people care so much?

I'm not so attached to my life that I want to keep living after it's no longer possible to keep living it healthy and happy. If I fall and crack my head and forever after have to have someone feed me and change my diapers, I want to die. No sadness, no struggle to win the right, just let me go and know that's what I want and let me fertilize a flower in a meadow somewhere.

If life becomes so unpleasant, for whatever reason--even if it's not a terminal illness--I want the right to die as comfortably as possible. Best case scenario, where are we headed in this realm? Will it ever get easier? And if so, will it only get easier for those with terminal diagnoses? Is there a movement I can be a part of? In the case of no forward movement, is there a secret society of like-minded people I can join?

For the record, I am and always have been a really positive, happy and healthy person in a loving relationship. We manage our lives simply and well and have wonderful friends. Life is good. But if I'm ever faced with being forced to keep living when I no longer want to, I want to know I've taken whatever measures available. I also don't want anyone to end up in prison for loving enough to help the process along.

If it matters, we're normal middle-class folk in the US who will never be wealthy and will always be freaked out at the expense of health care and the possibility of financial devastation over some unanticipated health problem. Even if we had the ability to purchase long-term care insurance, I'm pretty sure we'd prefer to slip away peacefully before life came to that.
posted by AnOrigamiLife to Law & Government (20 answers total) 27 users marked this as a favorite
I can't speak to the legality of assisted suicide in the US, nor would I be willing to hazard a guess on when (if ever) it is likely to become routinely available to whoever wants it.

An advanced life directive along with a medical power of attorney would go a long way to ensuring your wishes are respected: that in the matter of terminal issues, you strongly favor palliative care. Outside of a terminal diagnosis, I'm not sure there are too many in the US medical establishment who'd be willing to go along with what you're asking.
posted by jquinby at 1:15 PM on August 26, 2013

Is there anything in the works that looks like a living will but allows us in our younger healthier years to document the preference "if a, b or c happen, just guide me to the light with morphine"?

Isn't that exactly what a living will does?
posted by fancyoats at 1:16 PM on August 26, 2013

How Doctors Die

Not sure what your question is. Why people fear death, the undiscovered country? Have you ever actually been close to death? The body wants to live, all right, even if the mind has reasoned it away. So just keep the presence of mind when faced with illness, accept sufficient but not excessive treatment. But don't wave it away until you've actually faced it.
posted by St. Peepsburg at 1:17 PM on August 26, 2013 [2 favorites]

Assisted suicide is mostly illegal in the US. But do get your legal ducks in a row. A DNR, an advanced life directive, a living will and a constant stream of discussion with your loved ones about what you want.

My parents have already gone down to the Neptune Society and made their arrangements.

I'm with you buddy, FWIW.
posted by Ruthless Bunny at 1:19 PM on August 26, 2013 [1 favorite]

A living will is probably the best legal instrument to address what you're talking about, but the most effective thing to minimize the chances of what you're talking about is to have loved ones who understand the situation well enough and have enough strength of mind to TELL DOCTORS NO.

I've experienced a serious injury (I got better) and seen enough people from church, etc. struggle with these things to know that usually it's not the relatives who are hanging on; it's a medical community that doesn't present "let's do nothing more and wait for the end" as an option. You have to very pro-actively, and even aggressively say "no more."

I recently saw a couple of parents struggle with this - their child was born with birth defects that ensured no chance for a normal life, ever, and a usual prognosis of living 3-5 years. And when the illness came that was surely the end, and everyone pretty much knew it, the doctors still wanted to run every test there was, do everything they could, and generally prolong the agony, literally. I call it "running the score up," and doctors do it both in terminal and non-terminal situations. At some point I think eventually you have to cross the doctors and staff; I think you almost inevitably have to agressively, and repeatedly, say "no, we're not doing that."

It would take a better zen-master than I to address your last question. I've seen enough people, both religious and non, struggle with acceptance on this matter to come to the general belief that people's professed life philosophies are often poorly fitted to how they actually live, and I guess I'd have to let it go at that.
posted by randomkeystrike at 1:23 PM on August 26, 2013 [2 favorites]

I think about this too. Assisted suicide is explicitly legal in three US states already and will likely become moreso as time passes. Hope that helps.
posted by drjimmy11 at 1:23 PM on August 26, 2013

It's worth noting that in the three states listed above, a terminal diagnosis of some kind is required. That's not going to be of much help if becomes so unpleasant, for whatever reason--even if it's not a terminal illness--I want the right to die as comfortably as possible.

I don't see this happening any time soon.
posted by jquinby at 1:30 PM on August 26, 2013 [1 favorite]

In the case of no forward movement, is there a secret society of like-minded people I can join?

The Hemlock Society is not particularly secret, but they are the most well-established right-to-die organization in the US.

It's a heady question and I am going to skip all the ethical/caring aspects to the question only to say that in a society like the US that already is sort of religious, sort of not-awesome about health care stuff, and not great about the rights of people with severe mental and physical disabilities to self-determination and autonomous living, the problems of making legislation (as opposed to just looking the other way when someone made a determination to end their own life which we do much more than other countries do in that we tend not to prosecute failed suicide attempts) that affect all people is quite complex.

As for yourself, make your wishes known in writing and in person. Have a living will and a person who is a health care proxy who is well-schooled in what you care about having happen to you. If you wind up in a hospital for any reason at all make sure those wishes are, again, known even if you don't look like you're in any proximate risk of dying.
posted by jessamyn at 1:31 PM on August 26, 2013 [1 favorite]

Let me approach this from the practical side rather than the legal or philosophical side. If you ever do get in a "feed me through a tube and change my diapers" situation, who would be in a position to make medical decisions for you, and does that person know your wishes. Not in a wishy-washy hypothetical situation, or a "hey, here are some legal papers we never discussed", but does that person understand what you want, and can they be an effective advocate to carry out your wishes?

And if that person -- your primary "she would never want this" person -- is incapacitated alongside you (such as in a car accident that you're both in), what then?

Candid and clear conversations about your wishes can help clear this sort of stuff up.

And legal documents (medical power of attorney, etc.) can give force to those intentions. I think the problem with some of the legal documents floating around is that they are not as easy to understand or apply to certain situations. Or that because of social mores or nervousness, we don't specifically talk about what we think they mean.
posted by QuantumMeruit at 1:37 PM on August 26, 2013 [1 favorite]

In my experience, your loved ones will have a lot more power over this than you will, especially if you are ill. Your living will means nothing if your nearest family member(s) don't 100% agree with you about exercising it.
posted by jenfullmoon at 2:17 PM on August 26, 2013

Popping back in to say that I'm mostly interested in those situations where a terminal illness is not diagnosed (I remain hopeful that many other states will join the four where sane people determined that voluntary euthanasia is reasonable).

As for my questions, ducks in a row, living will, yes of course. Loved ones all in the know and on board, absolutely. What I really want, I will likely never get. I want to get it down on paper here and now that in a raft of irreversible circumstances that make life no longer worth living, I want the pill or the IV that lets me go quick and easy. When I'm being fed, bathed and changed, when I'm parked in front of General Hospital reruns. When I'm watching the people around me suffer for me in one way or another, because of me. Someone help me die and don't go to jail for it.

I know this is a tender and controversial subject. It raises far too many questions about who decides what and when, and whether I'd truly want to die when actually faced with it (presuming I'd be able to confirm or reject my previously stated preferences). Great thoughtful answers here, keep 'em coming!
posted by AnOrigamiLife at 2:18 PM on August 26, 2013

Even where assisted suicide is illegal, palliative care that has the side effect of killing you may be available from your doctor, but getting this absent a terminal illness, I don't know.

In any case, you will want your doctor and relatives clearly on board, because your doctor will want to be reassured that they won't be sued into oblivion by your family when you croak.
posted by zippy at 3:04 PM on August 26, 2013

From the article St. Peepsburg linked to: "Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo." I don't think this counts as a legally binding directive, but it might be something to consider nevertheless.
posted by zeri at 3:16 PM on August 26, 2013

Here in Vermont, we have a death-with-dignity law allowing docs to prescribe life ending meds, but it is brand new and as i understand it, so far unused, despite being immediately effective once the laws were signed by the gov this summer.

It's a form of assisted suicide, but relies on being terminally ill, as I understand. For euthanasia, you have to go to Europe. Some folks do. The requirement for being terminally ill isn't a prerequisite in euthanasia. Not available in the USA.

As we heard in our public hearings here during debate, "I've got the second amendment, 10 feet of rope, and car. I don't need your permission, State." All true. Not good alternatives, but kind of true in all 50.

The trouble with DIY death is that you kind of have to be OK enough to live for a bit to do it, but sick enough not to live for long. Also, you won't find a lot of people willing to help, though there are some. And it has to work when you DO do it. And is has to NOT FAIL, which is kind of a restatement to emphasize that. Not many people have experience, and if you don't have experience, how do you know what to avoid? Book-learning only goes so far in piano playing, if you know what I mean.

Anyway, we are a friendly jurisdiction and so are WA and OR. Others will follow. Probably not the anti-abortion and red states, but civilized, sectarian states will sign on as they have been doing with other social issues (where Vermont has also paved the way.)

Good idea to plan ahead.
posted by FauxScot at 3:43 PM on August 26, 2013

I'm not sure how much it speaks to your preferences, but just to throw this out there: my dad spent years preparing for every little thing, wills, trusts, DNRs...and when the shit actually went down, everything was in a safe-deposit box in a bank. On a weekend. At night. He wound up in ICU, coming home, smashing his face twice, being resuscitated once, and we wound up having to pull the plug a few days later. It was all for shit, basically, save for my mom now knowing to keep that stuff in the house, because guess what? DNRs have to be signed paper given to a doctor. It didn't matter what we said, or that he himself had told the admitting physician not to use heroic measures.

Also: Martin Manley
posted by rhizome at 5:06 PM on August 26, 2013 [3 favorites]

Personally I agree with what's been done in WA and OR, but I think that the 'why do people care so much' about the legality question has to do with the slippery-slope aspect, at least for some opponents. As an example, a person in the position to make such an end-of-life decision may feel subtle pressure from family members to go through with it if those family members are in financial trouble and want as much of the inheritance as possible, as soon as possible. This may be an extreme example, but I don't think that all opposition to this is necessarily from people who feel they know what's best for everybody else; there may be sound practical reasons for opposing legalization, or making it "too easy".
posted by pescadero at 5:20 PM on August 26, 2013

Is there anything in the works that looks like a living will but allows us in our younger healthier years to document the preference "if a, b or c happen, just guide me to the light with morphine"?

It doesn't explicitly support assisted suicide, but there is a developing paradigm called Physician's Orders for Life-Sustaining Treatment (POLST), with a view towards compassionate care. It's supported, where possible, by state regulation and provider policy, so you'll need to find out if there's a program available to you and work with them, assuming your insurance will permit it.

Outside of that, simply ask about compassionate care in general, which is something not strictly defined as such and thus more easily coexists with existing protocols.
posted by dhartung at 5:55 PM on August 26, 2013

Washington State has the POLST form and my doctor and I filled it out together and discussed it as we went along. It's more specific than the old living will or DNR forms were, gives options for your choice in level of care, and is honored by paramedics/EMTs, hospitals, etc. I keep the original form hanging in an envelope labeled "EMS" on my fridge, he has a copy in my chart, the hospital has a copy in my chart and my other doctor, primary care, also has the same thing.

It doesn't specify anything to do with assisted suicide, but it does give you a chance to choose pain medication and comfort measures to the max even if those measures hasten my death. I feel pretty comfortable now. Oh, and my kids have copies of the form and have promised to honor it, but on the form I've stated that the signed form is to take precedence over the wishes of any family members who may oppose it. I also keep a copy of the form with me in my purse whenever I'm out.

It's good for you to prepare the paperwork at your young age, but please remember to update it every three or four years with a new signature and date and make changes to it whenever things change in your own life. If it isn't current - if you have different doctors or different kids or their names have changed so they don't match the form when you die, it could be awkward and you might end up on ventilator support while they figure it out. I think it's harder to get off a ventilator than it is to die before being placed on one in the first place.
posted by aryma at 11:49 PM on August 26, 2013

What I really want, I will likely never get. I want to get it down on paper here and now that in a raft of irreversible circumstances that make life no longer worth living, I want the pill or the IV that lets me go quick and easy. When I'm being fed, bathed and changed, when I'm parked in front of General Hospital reruns. When I'm watching the people around me suffer for me in one way or another, because of me. Someone help me die and don't go to jail for it.

I am so, so with you. I think it's awful that physician-assisted suicide isn't yet legal throughout the U.S. People should be able to make their own autonomous decisions about their end-of-life care, and if their decision involves wanting to die comfortably without a fight, we should use all the tools at our disposal to help them achieve that peace.

That said...

There are 2 things so far unmentioned in this thread that make this really tricky.

1) As a young, healthy person, it's really hard to imagine life being worth living when you're someday being fed and changed, parked in front of the TV. What you value now is hugely based on your independence and your physical mobility. But when you are 80, the things that make life living may change.

Maybe being able to see your family will make it worth it. Watching people suffer to help you is awful, but also sometimes it's just what happens when people love each other. Surely you've put yourself out for someone you care about, and done it without begrudging the effort, because you love them. And on top of that, those people might suffer more if you were gone than if you stay.

Or even without family, maybe you'll just really love the banana pudding and want to see who betrays whom next on General Hospital.

When somebody is in pain, or in rapid decline from a terminal diagnosis, or is unable to enjoy anything due to extreme memory loss and confusion, then I think it's more obvious that prolonging life against their wishes is cruel. But your specification that you want medical suicide available even if you're not terminally ill gives me pause. I just wonder if you would really want to end it all, if you're not actually dying or suffering, just living a significantly more limited lifestyle than a 20-year-old. I, too, often think "I'd rather be dead than in X situation," but I think when you're actually staring those two options in the face, the decision might change. Dead is really permanent.

2) The other thing people are often surprised by is how much gray area there is. You say you want to list a, b, and c circumstances under which you would not want to be kept alive. But you can't account for all possible circumstances. And even if you do, it often doesn't become clear that those circumstances are true until the time for "allowing to die" has passed.

Say you have a major heart attack, and it's likely but not certain that you will have major brain damage if you survive. In those first hours and days, it is reasonable to keep you on life support because you might recover. You might get back to fully functioning, or near enough to it that your criteria for dying would not be met. But by the time you recover enough for us to realize that you're NOT going to be fully functioning, that the brain damage really is severe, you are no longer in immediate danger of dying. You're not on a ventilator or a feeding tube, so we can't just stop those life-sustaining treatments, even if it turns out you're going to need someone to feed and bathe you for the rest of your life.

It's true that there is often a point at which everyone can say, "I wish we hadn't kept treating, this isn't what he would have wanted." But before that point there can be a huge gray area, no matter how specific your documented wishes.

3) The third problem, which has been touched on above, is that by the time you're in a situation that almost anybody would consider it reasonable to end your life using medical means, you probably can't speak for yourself or make rational decisions anymore, even about your end-of-life wishes. The ability to speak for yourself is a huge part of what makes life living for many people, and the corresponding loss of autonomy when it goes is a major checkpoint on the list of reasons to allow assisted suicide. So by the time you're disabled enough for assisted suicide to make sense, you may be too disabled to indicate that you want it, and almost certainly too disabled to carry out the act without assistance.

The only possible solution to this is as other people have stated above: document your wishes in every possible way, make sure the documentation will be available if an emergency comes up, make sure your wishes are known to family and friends and your healthcare providers, and make sure that the people in your life are willing to fight for your wishes when you can't do it yourself. None of that is going to get a doctor to euthanize you unless/until it becomes legal, but it can help prevent life-sustaining treatment that you don't want.
posted by vytae at 10:50 AM on August 27, 2013 [1 favorite]

I wish I could have a regular happy hour with MeFites... enjoying all the feedback! I'll leave this unresolved for a little bit in case more are willing to pipe in with comments.

Wanted to share for others who are reading this post for resources that my own small-town hospital has an Advance Health Care Directive form that they provide to anyone who asks and, I believe, they offer to every single person who is admitted. It has several parts:
1) durable power of attorney for health care;
2) living will ("for any aspect of your health care to the extent allowed by law, except you may not authorize mercy killing, assisted suicide, or euthanasia");
3) organ donor preferences;
4) mental health treatment preferences;
5) designation of "physician to have primary responsibility for your health care;"
6) a set of wallet cards.

They keep this on file at the hospital. I don't know if this is standard practice across the US, but a visit to one's local hospital to pick up such a packet is a good first step in this process.
posted by AnOrigamiLife at 1:00 PM on August 27, 2013 [1 favorite]

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