The Story with Dick Gordon; 2013-04-08 Journalist Charlie Ornstein; Journalist Charlie Ornstein. Part 1

I'm Dick Gordon, this is the story. It's been three years since the Affordable Care Act was signed into law, and most people are still unsure of what it'll mean for them. Back in the early days, Alaska Governor Sarah Palin claimed that the bill would mean the creation of death panels, bureaucrats deciding who should live or die. Charlie Ornstein's been a health care reporter for fifteen years. He dismissed those fears over death panels. He says it was a frenzy whipped up by conservative politicians and talk show hosts. But earlier this year, Charlie's professional understanding of the health care system was challenged. He'd written about the huge amounts of money used to keep people alive at the end of their lives, but he had to face the reality of that when his own mother got sick. I was in Los Angeles on a work trip and I had talked to my mom, you know, she was heading to the hospital because she wasn't feeling well, but it wasn't something that was urgent or even critical, and I wasn't particularly worried. My mom was a little bit worried because, you know, she had a variety of health conditions and it was always scary to go to the emergency room, but I wasn't overly concerned.

And I was sleeping on a friend's couch and got a call at about 4.30 in the morning Los Angeles time telling me something had happened to my mom. And what were they saying at that point? Well, what they had said is that while they were trying to insert a tube down her throat, an nasal gastric tube, that she aspirated and that means that something like liquid or something went into her lungs and that caused her heart to go into a code. And they spent about 10 minutes trying to revive her. And it was not clear what that meant for us. I mean, for me personally, when I heard that, the prior summer, my dad had had something similar happened where he had been at the hospital and his heart had stopped and they spent 10 minutes trying to revive him. And I vividly remember, you know, my mom and my sister and I being told that he may not make it and we were talking about planning his funeral and he did make it.

I mean, he's fine. So when I heard this about my mom, I think my expectation was that she would be fine too. And in fact, so much so that I, you know, sort of had second thoughts about whether I even needed to fly home to Michigan to be with my family because I just thought this was just one of those things and my mom would get better. But I decided I needed to go home. I mean, I felt like I'm the person in my family who everybody turns to for navigating this extraordinarily complex healthcare system and it was something that I needed to do to be there to both see my mom but also lend my support. Charlie, in a piece that you wrote, you said that none of my years of reporting had prepared me for this. What did you mean by that? I think, you know, I obviously have dealt with, you know, dozens and probably hundreds of patients as I've written about the healthcare system, sort of the maddening complexity of the system, the way in which medical errors have caused just untold, you know, harm and

grief for parents, for children, for siblings, for, you know, for relatives, for caregivers. And yet when it came to the issues of sort of end of life care and death, I think I had sort of accepted the notion that when death was near that we spent way too much money trying to keep people alive and that we weren't able to accept the fact that death was near and that this was sort of a crippling cost on the healthcare system. And when I lived through it with my mom, I really had a very different perspective. And so when you got to Michigan, what were the doctors saying then? Well, from the time I got to Michigan, I got there very late at night and we weren't talking, we didn't talk to doctors when I arrived. But the next morning when I spoke to the doctor, he said, you know, it didn't look good, that my mom had had sort of these convulsions that happened after they had brought her back. And that that was a sign that things weren't looking good.

They didn't say outright that she wasn't going to make it. But I think that they were sort of grim about her prospects. But again, you know, even when I heard this, I was in the hospital emergency, the ICU waiting room. I remember sort of talking to the doctor on my cell phone as I was pacing back and forth. I was listening to this, but in a way, kind of just saying, yeah, yeah, you know, he has to say this. This is what they said with my dad and not totally embracing the fact that indeed things were so grim that, you know, my mom wasn't going to leave the hospital. The thing that is so maddening about being a family member of somebody who's in the intensive care unit is that healthcare and recovery, you know, is so slow moving. It is, I mean, it's the speed of molasses in that, you know, recovery is sort of marked by incremental improvements over the course of days. And when you're in a profession like mine or your deadline oriented and, you know, everything is moving so fast, the ability to just sort of watch nothing happening is unbelievably

hard. It is just, it's painstaking because you're watching for the most minute sort of changes on the monitor that's attached to her or, you know, you're waiting for a test that could take hours for them to process. And so it is just so slow moving. So they basically said we're going to watch this and we're going to hope that she improves, but you should know that the, you know, the prognosis is not good. And that's where it was the first day. And I remember going back to my cousin's house where I was staying that night. And, you know, one of the first things I did was sort of dive online and sort of look at recovery from this type of a brain injury and look at what the different studies said and look at what the, what it indicated from, you know, the percentage chances of a recovery and with the various symptoms that my mom exhibited and it didn't look good. I knew that, but I still was not entirely pessimistic.

I felt like the next day they were going to reduce the sedative that my mom was on and I felt like when they did that, she would snap out of it and we would start to see improvement and we didn't. And just to be clear, she was in effect being kept alive by the machines in the hospital at this point. Is that a reasonable way of putting it? It is. She was on a ventilator and she was on medication to raise her blood pressure because it had been low. And she was also on a sedative so that the convulsions that she was having wouldn't reappear. And so the day after, so the second day I was there, they took her off of the sedative. And I remember the anticipation of this that everybody was saying, you know, if we were going to see something, it was likely going to be at this point. And so they took her off the sedative. And my sister and my dad and I were in the room and we had music that we were playing tour and we were talking tour and we were holding our hands and telling her to squeeze

our hands or to look at us to show us some sign to show us some movement and at some point within this, we saw her wiggle one of her toes and we were pretty excited about this. And then when the nurse came in, she said, you know, that was an involuntary movement. That was not sort of a deliberate movement. And it was devastating. I mean, it was devastating that, you know, we didn't see any signs of sort of consciousness or any signs of recognition or anything. I mean, the anticipation was so sort of high for this. And then for it to, you know, to go nowhere, it was just devastating. What had your mother said about her own end of life wishes? What had she left with you or your dad? Well, she had not written anything out, although she had had a conversation with my father and she had indicated to him that if there wasn't sort of a real chance of a meaningful recovery and I think, you know, my dad interpreted that to be, you know, about a 5% chance that

she wouldn't want to be kept alive by artificial means. And this is where sort of my own perspectives on the healthcare system sort of went awry or led me astray. I sort of felt like you would know it, right, that if you were at the end of life, like the signs would be clear. If you had stage four cancer that was spreading all over your body, like you have stage four cancer, there's, you know, probably not much that can be done to keep you alive or if you were at the end stages of dementia. And yet, here we were. And there is no exact medical science that says, you know, if your brain has been deprived of oxygen for nine minutes, then your odds are, you know, 3.2%. You know, there's nothing, nothing like that. And so we were having to, you know, try to interpret, well, what is a real chance? What is a meaningful recovery, not with the idea that we were going to sort of overturn my mom's wishes, but rather with the view that we wanted to honor my mom's wishes and

it was so hard because we didn't, just the science isn't there to give you that level of certainty to know that you're making the right decision. And so where the doctors saying, you know, we owe, we can drive this, we can drive this, we can, what were you hearing from them? So on that second day, I spoke to her neurologist in the afternoon and, you know, sort of the sense was that you begin to make decisions at the 72 hour mark. That's the point at which if you're not seeing recovery, you very likely won't. And so my sister and my dad and I left the hospital that afternoon and we went to a Chinese restaurant and that was where we had sort of our family meeting where, you know, I think we had danced around the topic a bit in terms of, you know, talking about what we would do, but this is where we just sort of laid it out on the table and had a conversation about what it was that we would, you know, want.

And I felt really strongly about some things, you know, there were sort of my guiding principles in this. I mean, and they were my dad and my sisters as well. I mean, first of all, I felt like no one is going to rush us to make a decision here, right? I mean, if my mom is not going to recover, well, she's not going to recover in a couple days or she's not going to recover in four days, that we don't need to be sort of pushed into making a decision, not that anybody was trying to do that, but that was sort of one of my key things. The second is I very much wanted to have somebody who was not involved with this case at all to come in and sort of offer a perspective. And so we made the decision that night that we wanted to have sort of yet another opinion. You mean a medical professional, right? Exactly. Exactly. Another neurologist who wasn't her neurologist, wasn't in the practice of her neurologist had not rounded on my mom. And so, you know, somebody that we knew had given us a recommendation and she came the next morning and examined my mom and talked to us and sort of confirmed what we had heard

from my mom's treating neurologist. But she said, you know, if you want, there are a couple more tests that could be done. And so when you hear something like that, you're like, well, if they can be done, well, then they should be done because we need all of the information that we possibly can have. Charlie Orinstein and his family went ahead with a couple more tests and they kept waiting and talking and waiting until they agreed on what to do next and will continue in just a moment. I'm Dick Gordon from APM, American Public Media. This is the story.