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I’m a Death Panel

Ever wondered what, exactly, happens in those conversations that Sarah Palin is so determined to prevent? What is a Death Panel, after all? Now your questions can be answered from someone who has actually done the deed.

Or at least I assume I have, since as far as I can tell the whole “death panel” idea came from a provision in the health care bill that would have allowed clinicians to get paid once every five years if we spent time counseling patients about end-of-life care.

Uh-oh. “Counseling patients” must mean “euthanasia”.

Or maybe not.

The best time to talk to people about the end of life is before the end of life. Good primary care docs will ask all their patients, at some point, what their wishes are. My conversations with patients went something like this:

Mr. Jones, I’d like to talk to you about a dificult subject. I’d like to know if you’ve given any thought to how decisions about your health would be made if you were unable to make them. I ask all my patients this question – I’m not trying to sneak anything by you.

Are you asking about a living will?

A living will is one way to help make your wishes clear. As long as you can make your own decisions, the living will doesn’t matter. We’re talking about a time when you might not be able to help us decide what we should do. If we can talk about this now, I can help your family make those decisions if we’re ever in that situation.

I don’t want to be kept alive on machines.

OK, I understand that. But sometimes the machines only need to be used for a little while, and people can recover. If you needed a ventilator for 24 hours, and could recover completely, would that be worth it?

Sure. I’d do anything for 24 hours if I could get completely better.

That makes sense. What if you couldn’t get completely better? Some people feel that their life is worthwhile as long as they can communicate, even if they  need a lot of physical assistance. Other people feel that they really need to be completely independent.

Well, as long as I can talk to my family and enjoy my food, that’s enough for me.

So if we can use medical technology to help you return to being able to talk to your family and eat, then it’s worth it?

Yes.

OK. And of course we’d hope for a guarantee that we could do that, but more often we only know the chances. If we could use technology that had a 50% chance of leading to that kind of recovery, is that good enough?

Sure. 50% is a great shot.

What wouldn’t be a good enough chance?

I’d say 20%. If it’s less than a 20% chance, don’t do it.

So what I hear you saying is that if we can use medical technology to give you a better than 20% chance of recovery, you want us to go ahead.

Yes, that’s right.

OK. I don’t think you need to make a decision about the specific technology – it’s my job to help your family decide which interventions would meet your goals. As long as you can make your own decisions, then you and I will talk it over, but if it ever gets to the point where you can’t talk to me about it, this will help a lot.

Should I do a living will?

I think that’s a good idea. Have you talked to your family about this?

Well, my wife and I have discussed it a few times.

Do you want your wife to make decisions for you if necessary?

No, I think that would be too hard for her. I think my daughter would be a better choice.

Well, then I’d suggest you talk with both of them. If it would help, you can bring them in and I’ll talk to them, too. I’d also like to give you a copy of the Five Wishes, which will serve as both a living will and a Durable Power of Attorney, so you can write out your preferences and make sure your daughter will be able to do what you want.

OK, Doc. Thanks a lot. I’ve always kind of worried about being stuck on machines. I’m glad we talked about it.

I’m glad we did, too. If you have any other questions – or you change your mind about anything we discussed – let me know. And I hope it’s a long, long time before we need to make any of these decisions.
There you have it. The dreaded Death Panel.


23 thoughts on I’m a Death Panel

  1. Hallefreakinlujah! I’ve been trying to make people understand this for weeks. I swear I think my parents are convinced Death will show up scythe and all and take them away!

  2. I’m not planning on letting my mum die any time soon, but she and I have been talking on and off for years about her preferences (I’m her POA for both care and financial matters and have been since I was about 18). Far from being macabre or sinister, those kinds of discussions have helped me feel more confident and comfortable about being able to handle her end of life (and afterlife) care, even though I’d still prefer if both of those things were a long way off. I’d certainly rather have a doctor on the same page than totally unaware.

    You know, I was watching Dr. Strangelove the other day, and the mentality was still terrifyingly apt… precious bodily fluids, anyone?

  3. (@Jadey: that was a sarcastic reaction to the conversation in the OP, not anything about you).

  4. Wow, that was a really beautiful, frank and honest conversation. Haven’t heard one of those in a while in this discourse!! I’m sure your patients feel very comforted when cared for by you.

  5. I’m curious about Five Wishes. This whole death panel debate is making me want to make my own living will/advance directive (or whatever the right words are), and Five Wishes seemed like a really common and simple way to do it. But then all of a sudden in the last week after its creator wrote a pretty dumb column in the Wall Street Journal (http://online.wsj.com/article/SB20001424052970204683204574358590107981718.html), it’s all over the blogs being depicted as a sort of stealth-Catholic, pro-life thing with a prohibition on any action that might “intend” your death, even if you specify that you don’t want to be kept alive on life support or whatever. Is that true? Are there better, simple options?

  6. No wonder the conservatives are against this. It’s utterly terrifying! My soul is stricken with fear! Horrible, horrifying, horrific fear!

  7. When my father was dying of cancer and ended up on hospice, nurses, doctors, and social workers came to the house on a regular basis to talk to him about his quality of life, his concerns, desires and needs. He was never locked into some previous treatment plan. Every time his situation changed and his priorities shifted, they were there THAT DAY to talk to him and create a new plan with him. Hell, his own personal Death Panel convened at his bedside almost weekly. It was wonderful.

    They explained the process of death and dying, facilitated family communication about his fears and needs, and did everything humanly possible to keep him as comfortable and functional as the situation allowed.

    Nothing was done to hurry him out the door. Nothing that was done was cheap or convenient for his medical staff or his insurance company. I mean, how much do you think it costs to send an internist to somebody’s bedside at 7pm on a weekend? Multiple ambulance rides? In home nursing care? That shit isn’t free.

    Dying sucks, but hospice is wonderful.

    End of life counseling and palliative care is an amazing gift, both to patients and their families.

    This is why I see red every time I hear some jackass on the news spout off about Death Panel and how the government is going to kill off Grandma! Oh noes! Look, by the time you’re on hospice, death isn’t your biggest concern. Death is a certainty–it’s the quality of the remaining life that matters.

    End of life counseling is your best defense against dying alone, confused, frightened and in agony.

    Thank you for what you do, Jay. You give so much to people when they need it the most. Your actions help people that you may never even meet.

  8. Em, I hadn’t seen that column and I haven’t heard about the VA initiative. Thanks for the pointer – I’ll look into it.

    There’s nothing in the Five Wishes document itself that leads you in any specific direction. The phrasing is more positive (“I want…”) rather than negative (“I don’t want…”), but it’s clear that all the options are on the table. The facilitation guide that the agency provides is really aimed at helping people consider all their options and facilitating autonomy. I’ve worked with the document for years and never felt there was any specific agenda.

    His affiliation with a Catholic institution doesn’t worry me, but I agree the column is disturbing. I think the Five Wishes is still the best option, though, and the organization does good work, if you can divorce (!) it from the views of its founder.

  9. Thank you! My sister the nurse is my death panel. I have a life-threatening cardiovascular disease and she’s set up to make medical decisions on my behalf. I’ve given her guidance on what I want, of course, but I maybe should look into this “five things”. Maybe more specifics would make it easier for her.

  10. I think some of these people must be convinced they are immortal. Good for them, I guess, but I worry about the lives they harm in the process.

  11. I find the dominant Anglo US culture terribly immature about death to the point that it’s almost laughable. Persia is right, some people are in such denial about it that they have convinced themselves they won’t ever die. Or, the fantasy of dying old in bed, asleep of course, is so strong it’s confused for reality.

    Unfortunately horrible situations come up, accidents, etc. happen at any time, at any age, as the Shiavo case brought home. So for me, this seems like a conversation that should be had every 5 years or so at an everyday, run-of-the-mill annual checkup, starting at the age of 18. There’s no reason why not to take the 5 minutes it takes to put this stuff down in a patient’s medical record. It would give the individual greater autonomy over their own body and end-of-life. Or am I wrong, is there a reason why not?

  12. I know when I went in for surgery, before I was officially admitted, the staff took the time to determine at the very least who was to speak for me if I were to become incapacitated during the procedure. I simply indicated I trusted my husband to speak for me (I think I signed a form to that effect), and that was fine for that situation. That was major but not life threatening surgery. I’d expect a more detailed conversation in the event of a serious, chronic, or terminal condition, and perhaps at retirement age for a senior citizen.

    I know my mother in law (a staunch conservative who is sending out anti reform e-mails) mailed all of her children copies of her wishes in some appropriate format a long time back. We accepted her instructions graciously and placed them in a safe place for MUCH later reference. It’s how you prevent Terri Schiavo (sp?) situations!

  13. Thanks Jay.

    It is absolutely a conversation that everybody should have with those they trust.

    When I was working in Intensive Care it was very, very clear who knew what their relative’s wishes, values and beliefs were. It did not take away the horror of an unexpected crisis, but it certainly gave comfort in that those closest to the patient knew that they were acting in accordance to the wishes of their relative. The ultimate act of love and respect.

    And not least, it allowed others to grief about what happened and the inevitable changes it would bring (not only death by the way) and to simply value each moment they had with their loved one, without extreme anxiety about making decisions and worst of all causing relationship break-downs, full on fights and arguments when there is disagreements about what should be done.

    Those are truly hard to watch. A family falling apart when they need support from each other the most. Just because there is lack of knowledge of how to show love and respect, because there is little knowledge of that person’s wishes.

    Putting your wishes/values in writing is an act of love for those you love.

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