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Don't Take Death Lying Down | Jim McDermott

In this very accessible short talk, Jim McDermott encourages people to think and act on their own convictions to plan for their final days.

Full talk transcript

If I were going to put a title on this speech I'd say, “Don't Take Death Lying Down.” I know you didn't come here to hear about death, but a great American philosopher by the name of Woody Allen once said, “I'm not afraid of death, I could talk about death, I just don't want to be there when it happens.”  Well, the fact is you and I are all going to be there when it happens, and what I want to talk about is how that happens and what you do to plan for it happening. 

Now, all of you, me included, I've written my advance directives, and all of you ought to be thinking about writing your own advance directive: How I want my life to come to an end.  You say, well, you know, it's a long way out there.  Think about your friends — it happens sometimes to people young, sometimes to old, sometimes suddenly, and you need to be thinking about it and getting it written down so that you can share it with your family.  The alternative to that is an advanced directive from Virginia Mason or the University of Washington Hospital or Swedish Hospital.  Their advance directive is to prolong your life as long as they can.  Do everything they can — machine operations, all kinds of stuff.  The alternative to that is your advanced directive that says, “If I have only a certain amount of time left, I want it to be a certain way.”  

The alternative to that is your advanced directive that says: If I have only a certain amount of time left I want it to be a certain way.

Writing your advance directive is a lot of mundane stuff. I’ll tell you a story about my father. My father had a stroke, and so I went in to talk to him, and I said, “Dad, if your heart stops, what do you want us to do?”  He said, “Well, I don't want those paddles I see on television, because they make the body jump and I don't want that. I want the doctor to press on my chest to get my heart started.”  So I went back in to our family physician, Doug Powell, who had been with my parents and me for a long time, and I said, “Doug, this is what my father’s chosen.” He said,  “It is absolutely the wrong thing.”  He said, “Look at me — I'm going to lean on his chest and I'm going to break his ribs. Not because I want to, but because he's a frail old man.”  So I went back to my father and I said, “Dr. Powell said that you chose the wrong thing .”  He said,  “Well, that’s what Dr. Powell says, so let’s do that.”

Those kind of discussions have to occur.  Those are sort of mundane ones by comparison to the ones that are really tough.  What do you want people to do when it gets down to the end? How long do you want to prolong it, what do you want to go through in prolonging it, or do you want to have a life where you can enjoy some stuff? My father and I had a long discussion with my brother about the whole question about what he wanted. My father said, “I don't want anything at the end that just keeps me alive.  I'm 92 years old, and I'm ready to go to heaven, and God and I got it all worked out.  I'm ready to move on, so don't do anything to just keep me around.”

Well, one day after his third stroke, when he couldn't swallow, couldn't take anything by mouth, couldn't talk — that’s almost death for an Irishman — he had stabilized enough at the hospital, and they said, "Okay, we're going to move you to a nursing home. So my brother and I were there when this was going on, and they told us they were going to have to put a feeding tube in his stomach.  And they said, if we put it in, it's in permanently until he dies, we’ll never take it out.  So if you put it in, it’s permanent, it's just like putting somebody on a ventilator.  You gotta turn it off, and the hospital will never turn it off.

So the question that my brother and I are standing there thinking about was that my father said he didn't want this stuff, so we decided that he was at a position in his life where it didn't make sense to put in a feeding tube to just keep him alive, because he couldn't do any of the things that he really enjoyed.  Talking to people and communicating with the family and all the rest, or eating food. So we stood there and watched them pull a needle out of his arm — he was being fed intravenously — and realized that we were making a terribly big decision, but it was100 times easier because we had a conversation with him, that this is what he wanted: He didn't want to be kept alive just for the sake of being alive.  

Now, I also sent a copy to my daughter, and to my son, and I sent one to my attorney, and they're all over the place ...

Those kinds of decisions, you have to talk about them, and when I did mine, I did them three times because you keep changing, nothing you do is going to be put in stone.  You will change your mind about exactly what you want, but I've changed it and I  finally took one down to the University of Washington Hospital and I said to the doctor, “Hey, Doug, scan this thing into my electronic medical record so it’s there.“ Now I also sent a copy to my daughter, and to my son, and I sent one to my attorney, and they're all over the place, so that there won't be any question about what I want when these days come.

Well, I’ll tell you another story. I had a very good friend, known him for 30 years — his son’s my godson — and he got cancer of the throat.  He said,  “Look, I've read about it, I went on Internet, I read all about it, and I could see that I haven’t got very long, so I'm just going to check out. I'm not going to have X-rays, I’m not going to have chemo, I’m not going to have surgery.“ I said, “Hey, wait a minute, wait a minute, let’s get your sons up here so we could talk about this a little bit." One was a way off and one was here in town, so we got them together and they all had this big discussion about what should be done, and they convinced him, “Well, why don’t you do the chemo, why don’t you do the X-ray, and maybe it'll be better?”  And so he said, “Oh, alright.”

So he went through that, and then it was still there, and then they start talking surgery, big surgery, going to be a long rehabilitation from it, and he said "I don't want to do it!  There’s no point. I'm not gonna live, so I just want to enjoy the last days I've got here in life.”  Well, the sons found somebody who said he could do it a little bit different and maybe it wouldn't take so long and so they did the surgery.  It didn't work out right. He spent 43 days in University Hospital. I saw him every single day, and he got more and more depressed because he hadn't wanted to do it and all of this.  Finally, I said, “What can I do for you?”  He said, “Get the people from hospice, I'm ready to go.”

So I called a couple of my friends and they came in and talked to him.  The next morning I talked to him and he said, “I feel like a million dollars!  I got control of my life again.  It's not the hospital and all those needles and all those X-rays and all this — nobody's controlling my life, I'm controlling it.  I can go in to hospice any time I'm ready.”

“Well,” I said, “Our goal is to get you out of here so you can die at home.”  So we got him finally out of the hospital after 43 days. Then one day I said to him, “What's on your bucket list?”  He said, “Are you crazy, I’m dying!”  I said there must be something you'd like to do again.  He said, “Well, I'd like to ride across the Sound on a ferry at sunset and watch the mountains, and watch the sun and so forth.”  And so we got on the ferry and on the way over he said,  “You know, I’d like a beer.  But I don't know if I can keep a beer down.”  But I said, “Look, I've seen children who vomit and that's not the end of the world, okay?  So let's get you a beer.”  So he got a beer.  He kept it down and we had a nice day.

Three weeks later, I said, “What else is on your bucket list?”  He said, “You know that oyster house on Chuckanut Drive? There’s a big oyster place, let’s go get a dozen oysters.”  So we went up there and we had three dozen oysters.  And a big bottle of wine, and the bill came and he looked at it he said, “My God!” I said, “How many times are we gonna have this lunch, alright?  Forget it!”  Then the next one was at Snoqualmie Falls.  We hadn't had lunch out there in, I don't know, 25 years, so we went out and took pictures and did all kinds of stuff, and we were going to go to the St. Michelle winery when he passed. 

We had a great time. But that was because he had taken control — he had written final directives — he said what he wanted.

But those last weeks were very important, for him and his friends and his children. His sons went along with us on these trips, and we had a great time.  But that was because he had taken control — he had written final directives — he said what he wanted.

So there are four reasons why you should do this. The first one is for yourself, so that you go in the best possible way. The second reason is for those around you who care about you. Your spouse, your mother, your father, your children — whoever. They need to have that final directive so they don't have to stand there — one on one side of the bed, the other on the other side; one wants it, one doesn’t. Shall we let Mother go or shall we not? I mean, those kinds of things are terribly emotionally upsetting in families. As a psychiatrist, I've seen it and heard it. So I know that it's real.

The third group that people sometimes don’t think about is the doctors and nurses who take care of you. All of those people care deeply about what they’re doing. If they have a final directive they have an ethic that says they have to keep you alive, but they know in their hearts that this isn't really prolonging a good life for you, this isn't making it better.  It would be better to stop that.  In fact, they find the people who go into hospice actually sometimes live longer than has been predicted by the physicians who want to do the surgery or do the chemical treatment or whatever. So hospice is not necessarily shortening your life, it's just saying I'm accepting where I'm going and I want to be comfortable on the way.  And without those final directives, unless you put that in there, it doesn't happen, and the doctor has to keep prolonging your life.  

There's a fourth reason, and this is one I won't spend a whole lot of time on, but it's the whole question of money.  One day, I went in to see my friend who had been in the hospital for 43 days he said, “Look at this!”  And he flipped me the hospital bill, and I opened it up, and he said, “You see I spent almost half a million dollars in 43 days. And it didn't make one single bit of difference about were I'm going to wind up.”

We know in Medicare that 25 percent of the money that's spent in Medicare is spent on 5 percent of the people in the last year of their life, and it makes almost no difference in the length of their life for all that money that we spend.  So if you have some money that you want to give to your children to go to school, or you want to give it to charity, or you've got some idea of what you'd like to do with the things that you've accumulated, you must think about that and realize that the longer you let the final directive be driven by the medical profession and the hospitals and the medical industrial complex, the more you're going to spend, and there's not going to be anything left.

And doing a final directive isn't easy, I'm not for one minute saying that.  I spent three hours writing it the first time, and then I wrote it again, and I wrote it again, and I decided that I was going to hand it in.   I want you to write final your directive.  Don't take death lying down. 

Thank you.

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Speaker Bio

Since the U.S. draft was discontinued, Americans are not required to serve our country. U.S. Congressman Jim McDermott from Washington State suggests we rethink the ways we can give a year of service to our country. Jim McDermott is the U.S. Representative for Washington’s 7th congressional district, serving since 1989. He is a member of the Democratic Party. The 7th District includes most of Seattle, Vashon Island, Tukwila, Burien, Shoreline, Lake Forest Park, Lynnwood, Mountlake Terrace, Woodway and Edmonds. Read more

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