The Story with Dick Gordon; 2013-04-08 Journalist Charlie Ornstein; Journalist Charlie Ornstein. Part 2

I'm Dick Gordon. This is the story. Charlie Ornstein is a journalist who's covered health care for the Dallas Morning News, the LA Times, and now ProPublica. He thought he had a pretty good fix on issues surrounding end-of-life care and the costs associated with that. When his own mother was in the hospital, connected to light support, he started to question what he thought he knew. This was on a Wednesday, and again, it goes back to just how slow health care is. It took until Thursday to do the tests and we didn't get the final result of the second test back until Friday. And so, every day that she's there, your waiting, is there a part of your brain at this point, Charlie, where you're thinking to yourself, now I'm in the kind of stories that I've been writing. All my career is a health care reporter where you measure all the work that's done at the end of life and say, you know, is it worth it? Do we keep someone on life support, that sort of thing? Or do you just shove all that aside and say, this is my mother, I'm concentrating on her? Well, I mean, I think both happened. I mean, I'm constantly thinking in the back of my head about sort of all of the coverage I've done on health care and the various stories I had written about end-of-life care.

But, I mean, the predominant view is, you know, this is my mom, and you don't make this decision twice, like, for all that doctors and nurses care about the decisions you make, they are not the ones who will wake up in the middle of the night and sort of the cold sweat saying, oh my god. Like, did I make the right decision? Like, this is one of those decisions that for the every day you live, for the rest of your life, you know, will weigh on you. And it's, I mean, the weight of that is tremendous. I mean, even sitting here now, you know, two and a half months after my mom passed away, I mean, I can tell you not a day goes by when I don't think about sort of having to make these decisions. And I know for a fact that there are hundreds or thousands of people who are out there, many who have contacted me to say just how alone they've felt in that moment when they've had to make that decision and how guilt sort of has stayed with them, you know, years after the fact. And as the health care reporter did the family just say, Charlie, what, you know, what do you think we should do?

Well, I think that we all came up with a solution together. And the one thing I was worried about also was the possibility that if we told anybody, you know, sort of what our thinking was or where we were leaning, perhaps people would treat my mom differently. Or they would be want to interpret the tests in some way because they knew where we were leaning or when we would be willing to make a decision. And so I thought it was very important that we not discuss, you know, sort of where we were thinking with other folks because I wanted to see the results of those tests. And I think that we knew what we would do if the results came back negative, which they did. And I never thought of that sort of subjective side of it, like if the doctors knew that you were leaning towards keeping your alive, that they would maybe put a certain sort of interpretation. Or if they knew that you were, you know, willing to consider disconnecting the monitors. I mean, I just, and that could be completely sort of an irrational thing on my part. And I recognize that.

But I guess I've come into situations in which, and reported on situations in which particularly in the area of organ transplantation and organ donation, where there have been a couple cases in which people have been declared brain dead prematurely or there was pressure to sort of hastened death in order to procure organs. And while I'm certain that is a incredibly minority percentage of the time, when you cover a story like that and you get into the detail, I mean, that sort of thing sticks with you. So how did you make the decision, ultimately? It wasn't that it was made for us, but when the results of these tests came back and, you know, dick being the healthcare reporter I was, I asked to see sort of the test results on paper. I wanted to read them myself, and I mean, it was clear that my mom was not recovering and had had a, you know, devastating brain injury. And that while, you know, we could keep her on this ventilator that she was not going to be, she was not going to have a, you know, meaningful chance of a real recovery.

And that our job was to honor, you know, my mom's wishes. And, you know, we had talked with our rabbi and had a very sort of meaningful conversation about religious aspects relating to this. And we didn't want this to sort of be carried out on the Jewish Sabbath. For us, it didn't feel right. And so they disconnected my mom from the ventilator on a Friday afternoon. And, you know, sort of the indication we got was that she wasn't even going to be able to take a few breaths on her own, and that would probably be, bring about her death. And, you know, my mom sort of in true fashion, just how she lived her life, she was not going to let other people sort of dictate, you know, how fast she went. And she lived for, for about seven hours after they disconnected her from the ventilation. And we had a very special sort of Friday night Sabbath service in the room where we lit candles and said the blessing over the wine.

And, you know, sort of in my mom's presence. And it was a very, it was a special ceremony. And one, we didn't think that we would, we would have, but it was, it was very moving. And so you had your knowledge of the system. You had the tests that were giving you pretty clear indication. You had that kind of spiritual moment to say goodbye to your mother. Was there ever a time, Charlie, when you would have liked to have turned to say a medical professional who wasn't a neurologist or somebody trying to interpret the test to say, you know, what do we do here? I mean, you know, you've seen other people in this situation. Can you give us some guidance? And I'm asking you the question because I know that in the past years ago, you got caught up in writing about the controversy over, you know, should Medicare be compensating doctors who offer this kind of advice, which then became the death panel controversy and stuff like that. But you lived through this. And I wonder if you wanted someone to say, you know, you're ultimately going to have to make the decision yourself, but here's some guidance that I can get you.

Well, I mean, fortunately for me, I know a lot of doctors. And so I discuss this with more than just the, you know, neurologists who are providing the second opinions. I mean, I discuss this with a number of doctors, family friends and others to get their perspectives. But I was lucky and that I was able to do that. After the fact, though, I said, you know, I did want to sort of see how my family's decision making sort of squared up against people who say that you shouldn't devote the funds to futile. The funds to futile care at the end of life. And so I had a conversation with one of sort of the preeminent authors of studies and research on this topic in which I sort of outlined my mom's circumstances and wanted to get his opinion on were we wasting the system's money in keeping her live for a couple extra days beyond those 72 hours and ordering these extra tests. But also, did we do the right thing for your mother, right? I mean, that's exactly exactly. And he felt like, you know, everything we did made perfect sense and felt like we shouldn't have felt rushed and that nobody should have put pressure on us to make the decision. But also that based on the way in which the, you know, the test had come back that it was, you know, it sounded like, you know, there was really no chance. And that was what we heard from everybody that I talked to in which I sort of outlined the circumstances.

I mean, it would have been different if my mom was my age, you know, somebody who, you know, was in her 30s and still she was young just 70, right? She had just turned 70 and but she had Parkinson's disease and other sort of neurological impairment. She had been hit by a car and had a, you know, closed head injury. So there was already sort of some neurological damage. And when you combine that with going without oxygen in the brain for for nine minutes, it was just too much of a sort of an assault to the brain for her to to come out of. And so if you were to sum up, I mean, how did your mother's death change your thinking about end of life care? And in, in just a variety of ways, I mean, first, I feel like they're really a societally, we've allowed political slogans and this whole completely manufactured controversy about death panels to prevent us from having a sophisticated conversation about end of life care. There are so many people who were in my situation who this has just, it's just traumatize them to be in this position and we boil it down to talking about the government trying to, you know, create death panels.

Nobody created a death panel in these situations. These are real families having to deal with real decisions and we offer no support. So that's the first thing. The second thing is, I think we have to have a conversation that sort of separates out end stage dementia and end stage cancer and things like that to things like what my mom had, what do you do in the case of somebody who's okay and who had a stroke or who had a heart attack or who had a seizure and is now in the ICU. And how do you deal with those things? Because it's quite a bit different from, you know, do you try yet another round of chemotherapy or do you keep somebody alive by putting in sort of a feeding tube in their stomach and a tracheostomy tube as they're, you know, progressing to their, to their death. And I just don't hear any dialogue about sort of end of life discussions in that population in which you have something that's acute that comes on.

And you don't have that same time to sort of plan and discuss and exactly go through everything that could happen with your loved one. And I just felt like, you know, we were so alone and so many other people were so alone. And gosh, I wish that we could discuss that more. And finally, I feel that, you know, reporters and I include myself in this, have to sort of, if you haven't been through it, it is so hard to imagine what it's like to go through it. And it, that has sort of forever had an effect on me in terms of covering medical stories and making me appreciate that no matter what you think something is like, you can't imagine what it's like. And so last question, Charlie, how do we make this conversation that can be more public and less lonely? I mean, that's, that's the word that I take away from. You know, what people get caught up in is the sense of isolation that they're in when they have to make these decisions interpreting medical data and end of life decisions.

And, you know, I mean, we've seen how many times people huddled in small groups and waiting rooms doing that sort of thing as you did. But how do you make it any more public than that? I don't quite get that. You write about death. I mean, you write about a topic that you don't, that people don't necessarily want to read about, but you write about sort of how people make decisions like this. And there was a fantastic series that ran in the San Jose Mercury News last year where a woman sort of took her dad's sort of end of life decisions and made a huge project about sort of people in similar situations. And there's Alan Goodman, who's a Pulitzer Prize-winning columnist, started a group called the Conversation Project, which is designed to have people have conversations about end of life. And there are efforts all around the country to make April 16th a national decision day in which people will articulate their wishes about end of life.

So all of these sorts of efforts that try to bring about a greater discussion and dialogue over this issue are welcome. But I still feel like even if you've articulated your wishes, sort of my experience shows that it doesn't settle the whole thing. And that's what I'd like more discussion about that. Just writing down what you want is sometimes raises more questions than it does answer them. And we have to figure out how to get to that. And I wish I had a good answer for it. Charlie Ornstein is a health care reporter with ProPublica. As he said, April 16th, a week from now has been marked as national health care decisions day, a time for people to make sure they've had the talk with family about what's supposed to happen or what they would like to have happen at the end of their lives. And we have a link for more of that on our website, you can find us at thestory.org. You're listening to the story. The moment when I heard that Margaret Thatcher had died, I thought back over the years that I remember her as Britain's Prime Minister.

She was international news. She faced down the unions and the IRA. She forced through the privatization of state industries. She never seemed to be phased by her critics. She had very little patience with reporters. She had this sense of mission in her drive to reinvigorate the UK. They called her the Iron Lady, and she earned the name. But the memory that comes back to me is one that's almost completely at odds with that image. I was in London. I was there as a radio reporter with the CBC, the Canadian Prime Minister had held a formal meeting with Thatcher that afternoon. And the report I filed was one of those forgettable stories about bilateral trade and the coordination of policies and other boring news. That evening, though, Margaret Thatcher was hosting a private dinner at Ten Downing Street. There would be no coverage of the speeches, no reporters allowed.

But CBC television was given what they call one of the pool positions. That means a TV cameraman and a sound person would be inside Ten Downing Street, stationed in one place to film the arriving guests, then they'd be ushered out when the dinner began. I asked the TV crew if I could be the one who'd go along to do the sound. It was a little bit risky. The rule was that no reporters were supposed to be part of the pool. It was for pictures only. But the event seemed to matter so little that the TV people said sure, go along if you want to. So about an hour before the guests were to arrive, we showed up at that distinctive black door with a number ten on it, Downing Street. It's very deceptive. It looks quite small from the outside, but the formal residence for the Prime Minister goes back forever, with offices and meeting rooms and formal places. We were escorted down one hall and then to the top of a set of wide carpeted stairs just outside the dining room. We were told pretty well to mind our own business until the guests started to arrive. The TV cameraman looked at me and said, this is the boring part, and we started waiting.

Before long, the serving staff started walking past us with candles and napkins and flowers and dishes, and we were just waiting, staying out of their way. It was boring, and I was wondering why I'd volunteered for this. The next thing I knew, though, Margaret Thatcher was walking past. She had an unmistakable presence, a distinctive stride and that upsweep of blonde hair. I could be wrong about this. It was almost twenty-five years ago, but I think she was wearing an apron, too. I could see into the dining room, and she was talking with the servants, adjusting the settings, checking the flowers, just the way you would if it was your dinner party. And I'm thinking to myself, this is the iron lady. Shouldn't she be on the phone with Reagan plotting their next move in the Cold War? When she turned around and came back past us, I said, hello, and to my surprise, she stopped, and she said, hello. Have you been waiting long? We said no, she offered us tea, and asked one of her staff to bring us a cup.

She said, I know it's still a while before dinner, but please make yourself comfortable, and if there's anything you need, let me know. And I'm thinking, this is Margaret Thatcher. This is the woman who can't stand the media. And that was it. The next time we saw her, she was in a well-pressed bright blue jacket and white blouse, greeting the likes of the 007 actor Roger Moore and other notable figures of British society who'd been invited to dinner that night. The Canadian Prime Minister and his wife came past us, and she greeted them, and we got the pool pictures, and we were escorted back to the street. It's funny how such a simple moment can alter your perception. I never doubted that the economic transformation she imposed on Britain caused a lot of hardship for people, and I watched the haughty way she always dismissed her detractors. But after that one short encounter, and it was near the end of her time in office, after that she was never quite as iron a lady to me. I'm Dick Gordon from APM American Public Media. This is the story.