The Ventilator: Life, Death And The Choices We Make At The End Many of us believe we know how we'd choose to die. We have a sense of how we'd respond to a diagnosis of an incurable illness. This week, we have the story of one family's decades-long conversation about dying. What they found is that the people we are when death is far in the distance may not be the people we become when death is near.
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The Ventilator: Life, Death And The Choices We Make At The End

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The Ventilator: Life, Death And The Choices We Make At The End

The Ventilator: Life, Death And The Choices We Make At The End

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SHANKAR VEDANTAM, HOST:

From NPR, this is HIDDEN BRAIN. I'm Shankar Vedantam. In 1950, A 3-year-old girl from Tennessee contracted polio. Within days, Dianne Odell couldn't walk. Then she couldn't breathe. Her life was saved by a miraculous, monstrous device - the iron lung.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON #1: You are listening to the breath of life as it is pumped by these tank respirators called iron lungs.

(SOUNDBITE OF IRON LUNG PUMPING)

VEDANTAM: Over the years, new types of respirators allowed many polio patients to escape the iron lung. Not Dianne - she had a spinal condition that made it her only option. So she stayed flat on her back, encapsulated from the neck down in the long, noisy, cylindrical tube for 58 years.

(SOUNDBITE OF MUSIC)

VEDANTAM: In an interview shortly before her death, Dianne said people often had the same blunt reaction about what they would want in her situation.

(SOUNDBITE OF DOCUMENTARY, "POLIO REVISITED")

DIANNE ODELL: Most of them said, I'd rather be dead. I couldn't live that way. I'd rather be dead. Nobody would rather be dead. They think in the spur of the moment, but there's always tomorrow.

(SOUNDBITE OF MACHINE WHIRRING)

VEDANTAM: There is always tomorrow. Dianne saw her choice very differently than the people looking in from the outside. It's one thing to say you would not want to live for 58 years in an iron lung, but that is not the choice that confronted Diane. The choice was always, do you want to see tomorrow?

(SOUNDBITE OF MUSIC)

VEDANTAM: Today, we look at how one family grappled with the same question. Over the decades, they talk deeply about the choices they would want to make in the face of an incurable illness or terrible injury. But when the time came to act on their beliefs, they discovered a question they hadn't considered. What if the seemingly rational choices you prefer when you're healthy no longer make sense to you when you're actually confronting death?

(SOUNDBITE OF MUSIC)

VEDANTAM: Life, death and our future selves, this week on HIDDEN BRAIN.

(SOUNDBITE OF MUSIC)

VEDANTAM: The great dining hall at Kenyon College in Ohio looks like the interior of a church - stained-glass windows, soaring arches, huge oak tables. This is where John Rinka first met Stephanie Bowman.

JOHN RINKA: Stephanie came strolling in with this magnetic force behind her.

(SOUNDBITE OF MUSIC)

JOHN RINKA: And her hair was long and auburn. And she was striding. And she looked very confident.

VEDANTAM: It was 1969. John was a senior, Stephanie a freshman. A few days later, John ran into her again at a frat party. They started talking over beers. The conversation flowed and never really stopped. By the end of the evening, they'd shared a kiss and made plans to see each other again.

JOHN RINKA: She's just really, really fascinating and beautiful and different from anybody I'd ever met.

(SOUNDBITE OF MUSIC)

JOHN RINKA: And I just wanted to be around her.

VEDANTAM: John was a force himself.

(SOUNDBITE OF WHISTLE BLOWING)

VEDANTAM: He was one of the top college basketball players in the nation, which was extraordinary because he was only 5-foot-9. But he had a special gift - focus and an immense capacity for hard work. He was known for his offensive skills and killer jump shots.

(CHEERING)

VEDANTAM: That year was magic for both of them. John set a scoring record that remains on the NCAA books, averaging more than 40 points per game. Stephanie reveled in the feeling of being on her own for the first time. They were thriving. Both felt it. After graduation, John moved to Boston for a coaching job. Stephanie made regular trips to see him.

JOHN RINKA: Maybe she was concerned about me being out there, you know, single in Boston. I don't know.

VEDANTAM: What John did know was that Stephanie made him happy. Stephanie decided she'd rather be with John than in college. She wanted to elope, and John agreed.

(SOUNDBITE OF MUSIC)

VEDANTAM: On an April morning in 1971, they walked into Cambridge City Hall and said their vows before a Justice of the Peace.

JOHN RINKA: She was impulsive. I was game. I loved her. All I knew was that I wanted to be around this person because I thought life would be full.

VEDANTAM: John was 22. Stephanie was 19. The fullness of life lay before them.

(SOUNDBITE OF MUSIC)

VEDANTAM: Four years passed. It was now 1975. John and Stephanie had left Boston and were living near Washington, D.C., to be close to Stephanie's ailing father. Stephanie was now a nurse. She worked in a hospital on a kidney transplant unit. John taught English and coached basketball at a local high school.

Over the Christmas holidays, they flew to Milwaukee to celebrate the new year with the Rinka clan. John hoped the visit would ease lingering tension around their city hall marriage. John's dad had not been happy about it. On New Year's Eve, they all went out for a big dinner.

JOHN RINKA: And when we got home, turned New Year's, dad went to bed. Steph said, I'm going to go up. I stayed up with my mom and talked. Quarter to 1, my dad walked into the room and said, I feel awful.

VEDANTAM: He was pale and struggling to breathe. Luckily, there was a nurse in the house.

JOHN RINKA: I went and got Stephanie. Stephanie came in and - Mr. Rinka, Mr. Rinka, get down on the floor. And he was almost ready to pass out, so she got him down on our dining room floor. And she said, quick, call 911. Call 911.

VEDANTAM: John's dad stopped breathing. Stephanie started CPR.

JOHN RINKA: I can hear her counting - one, two, three, four, five, six, seven, eight, nine, 10, 11. And then she'd breathe. One, two, three, four, five, six, seven, eight, nine - and she just kept, you know, and just kept at it till they came and relieved her. One, two, three, four, five, six, seven, eight. One, two, three, four, five, six, seven, eight.

VEDANTAM: That night, Stephanie saved John's father's life.

(SOUNDBITE OF MUSIC)

VEDANTAM: But on the ambulance ride to the hospital, he suffered a second heart attack and then another one in the ER, which led to a stroke. Finally, the doctor stabilized him. But as the family gave thanks, Stephanie pulled John aside. She warned him that his father might be forever changed.

JOHN RINKA: This is where I heard quality of life. And this is where I heard her expound about, you know, people - there's a point where people's life isn't worth living. And of course, these were shocking to me to think about that. That's where I really started to look at this. And I looked at my father, and I thought, wow. OK. What's his life going to be like?

VEDANTAM: Chester A. Rinka lived for another 10 years, for which John is grateful. But the energetic baseball coach, the vibrant history teacher - he disappeared that night in the hospital. The man who reemerged was frail and vulnerable.

JOHN RINKA: It imprinted on me even more this idea of what happens after these moments when medicine can intervene successfully.

VEDANTAM: The experience marked the beginning of an ongoing, decades-long conversation between John and Stephanie.

(SOUNDBITE OF MUSIC)

VEDANTAM: They began to consider what it means to save a life at all costs. The questions they were discussing have long occupied patients, families, ethicists and philosophers. What makes life worth living? Is there a point at which you can be alive but not really alive? Who decides when you reach that point? What if my definition of quality of life is different than yours?

Over the years, there were other times when Stephanie and John's musings on life and death became urgent and real. Stephanie's father died of a heart attack. They lost a son right after he was born. They got to see life at its worst, but also at its best. They had four healthy sons.

Stephanie loved being a mom, and John felt he'd found his calling as a teacher and a coach. They moved a lot, but to them, it was always an adventure. By 1995, they were living up in the mountains of North Carolina in an area known for both its beauty and poverty. Their old farmhouse looked out on a two-lane winding road.

JOHN RINKA: We're just about half a mile from what was called Laurel Gap.

VEDANTAM: One Saturday afternoon, John was puttering around outside. Stephanie and the boys were inside. Suddenly, a car sped by going way too fast.

JOHN RINKA: And then I heard the squeal of the tires. And then I heard the, you know, very clear and obvious crash into a tree.

(SOUNDBITE OF TIRES SQUEALING)

VEDANTAM: Stephanie heard it, too. She flew out of the house and ran to the car. Inside were three teenagers. The two up front were OK, saved by the airbags. But the young man who had been in the back hadn't been wearing a seatbelt.

JOHN RINKA: And he was wedged underneath the dashboard.

VEDANTAM: Stephanie realized immediately that the young man's head was bent down to his chest in a way that meant he couldn't breathe.

JOHN RINKA: So she had to decide - now, she told me how conflicted she was with this. She had to decide - if I remove him from this position so that he can get air, am I going to cause permanent damage to what might be broken - neck, probably.

(SOUNDBITE OF MUSIC)

VEDANTAM: Stephanie did what she'd been trained to do - what most of us would do in a moment like that. Do whatever it takes to try and save a life. Get to tomorrow.

JOHN RINKA: She moved slowly to get him out so that he could breathe. And then she sat there and held him until the ambulance arrived.

(SOUNDBITE OF SIRENS)

VEDANTAM: But after the emergency crews left, Stephanie didn't celebrate.

JOHN RINKA: All she could think of was just, John, I hope he's not paralyzed. I just hope he's not paralyzed. I hope I didn't make it worse.

VEDANTAM: Some weeks later, John was at work one day at the local high school.

JOHN RINKA: Then this kid came up to me while I was standing in the hall and said, please thank your wife for saving my life.

(SOUNDBITE OF MUSIC)

VEDANTAM: It was the young man from the car crash. He'd not only survived, he was fine. It was the happy ending they'd all wished for. It showed John and Stephanie that heroic medical measures to save a life often do make sense. Stephanie had given another human being decades of tomorrows.

There were other times, however, when Stephanie worried that the miraculous tools of modern medicine produced more harm than good. In her work with patients, Stephanie saw cases where medicine saved a life but left a person in unending pain or on permanent life support. When was the suffering too much?

JOHN RINKA: We discussed euthanasia, you know, because she had witnessed a lot of things in which she thought, you know, it might have been better for that person to die.

VEDANTAM: Stephanie was always clear on what she would want in the same situation. She didn't want to live if it meant her quality of life was gone.

JOHN RINKA: She would say, John, just shoot me. Don't ever let me get to that point. Just shoot me. I heard that. I heard that I don't know how many times.

VEDANTAM: She said the same to her oldest son, Jason, even when he was just a kid.

JASON RINKA: Whenever we would discuss somebody that she'd seen in the emergency room or seen in the hospital, I distinctly remember her telling me, I don't ever want to be like that. I don't ever want to end up like that. And that is a lot for a kid to take in. But I do distinctly remember her saying this on multiple times. Don't - I don't ever want that to happen to me. Don't ever let that happen. OK, Mom (laughter).

VEDANTAM: So it was clear. Everyone in the family knew it. If, for some unlikely reason, something terrible happened to their strong and healthy mother, if her quality of life was gone, if she was unable to live with dignity, they should let her go. That was what she wanted.

(SOUNDBITE OF MUSIC)

VEDANTAM: It was now 2008. Stephanie was 56, and John was 59. They had moved yet again - this time to Wilmington, N.C. John was still coaching and teaching. Stephanie had a nursing job two hours away in Raleigh. She worked weekends. One Sunday evening in June, John was reading in the living room, waiting for his wife to return. When she walked into the house, he says, she didn't bother with a greeting. She got right to the point.

JOHN RINKA: John, there's something wrong with my speech. I said, no, there's not. No, John. There's something wrong with my speech. I can feel it. I thought, well, Steph, I can't hear it. I mean, trust me. If I heard it, I would tell you. OK.

VEDANTAM: Stephanie let it go. But clearly, it was still on her mind. Whenever she had a free moment, she would go online.

JOHN RINKA: And try to diagnose what this could possibly be.

VEDANTAM: An endocrinologist found a benign growth on her thyroid. But when Stephanie asked if it might be causing the speech problem, he responded bluntly.

JOHN RINKA: No, no, no. That's either myasthenia gravis, multiple sclerosis or ALS.

VEDANTAM: None of those options was good. ALS seemed like the worst. It's a fatal neurological disorder that eventually shuts down muscle control, including the ability to walk, talk, even breathe. But it's extremely rare and affects men more than women. The odds were in Stephanie's favor. Still, even the idea of it terrified her.

(SOUNDBITE OF MUSIC)

VEDANTAM: One night, as she was driving to Raleigh, she passed a billboard for the annual Walk for ALS.

JOHN RINKA: And she called me immediately. I said, hey, Steph. What's up? John, what if I have ALS? I said, calm down. No. John, what if I have ALS? And I could hear the panic in her voice. I kept saying, Steph, really think about the odds. Come on. Let's just see - and then I did my rational thing that I had always done with her. I laid it out - you know, what the odds were. I'm doing it for myself as well, you know? And - but that had told me it was on her mind.

VEDANTAM: They knew they'd have to keep searching for answers, but decided to wait until after Christmas. Finally, in February 2009, Stephanie made an appointment with a neurologist. John remembers that drive to the clinic.

JOHN RINKA: She's extremely somber, and she's listening to this mournful music.

(SOUNDBITE OF SONG, "KEEP ME IN YOUR HEART")

WARREN ZEVON: (Singing) Shadows are falling, and I'm running out of breath. Keep me in your heart for a while.

VEDANTAM: The music was from Warren Zevon's last album, which he made as he was dying.

(SOUNDBITE OF SONG, "KEEP ME IN YOUR HEART")

ZEVON: (Singing) ...Doesn't mean I love you any less. Keep me in your heart for a while.

JOHN RINKA: You know, this is a haunting mood, let me say that.

(SOUNDBITE OF SONG, "KEEP ME IN YOUR HEART")

ZEVON: (Singing) ...And you see that crazy sun, keep me in your heart for a while.

VEDANTAM: The neurologist had two tests planned. One is done with electrodes on the surface of the skin.

JOHN RINKA: And they run a charge, and they see what the reaction to that charge is. That measures that reaction.

VEDANTAM: The neurologist didn't detect any problems.

JOHN RINKA: Steph has this tremendous sigh of relief, as do I. And then we get to the other test, in which they run a probe subcutaneously and then registers with an electric current response.

VEDANTAM: The doctor started on Stephanie's right leg.

(SOUNDBITE OF MUSIC)

JOHN RINKA: And she inserts the needle and runs the charge. And Steph goes, how was that one? She goes, good. She goes up to the next point on the right leg, and she inserts the charge. And Steph goes, how was that one? Well, not that good. She goes to the third insertion. And Steph said, how about that one? No, not good.

VEDANTAM: The neurologist continued inserting needles into Stephanie's abdomen, arms, even below her tongue.

JOHN RINKA: And got this full array of slow registration of muscle response. Stephanie was sobbing through the rest of that. She was just sobbing, trying to muffle.

VEDANTAM: Then the neurologist delivered the words they knew were coming. She believed Stephanie had ALS.

(SOUNDBITE OF MUSIC)

JOHN RINKA: There's no hope. And every day, you get worse.

VEDANTAM: John and Stephanie drove home and started calling family.

(SOUNDBITE OF MUSIC)

VEDANTAM: Stephanie was eventually diagnosed with a type of ALS that affects swallowing and speech first. She was told she most likely had somewhere between two and five years to live. So in typical Stephanie fashion, she got on with the living right away. She made a cross-country road trip with her two oldest sons, Jason and Matthew.

JOHN RINKA: They drove to LA - rented a car and drove back cross-country. And they stopped at the Grand Canyon. And they stopped at Goblin Valley in Utah, places we had been to before.

VEDANTAM: She took a cruise to the Caribbean with a friend.

JOHN RINKA: And then when she came back, she got in a van and took two of our sons down to Florida.

VEDANTAM: They went to the Everglades and the Keys. They swam and snorkeled and collected shells.

(SOUNDBITE OF MUSIC)

VEDANTAM: And whenever they could, John and Stephanie went to a beach right near their home.

JOHN RINKA: A beautiful beach - Fort Fisher. You can walk it for miles. And that, she loved. She just - that was her church.

(SOUNDBITE OF SEAGULLS CALLING)

VEDANTAM: John had to make some changes as well. He retired from his job and got a long-overdue hip replacement. He wanted to be healthy and strong for his wife because he was going to be there for her every step of the way. He knew exactly what he was aiming for.

JOHN RINKA: The most comfortable life, enjoyable life, until it's time to die, and then making sure she died with dignity. Dignity, peace, calm - they were all what I was working towards.

VEDANTAM: Most of that first year after the diagnosis was good. It was nearly impossible to tell that Stephanie was dying. The only signal that something was wrong was her speech. People could now hear what, for so long, only she could hear.

What did you notice about her speech?

JOHN RINKA: Slight slurs - just slight slurs, you know? Like, one-too-many-drinks slurs, you know - nothing significant.

VEDANTAM: But as the months wore on, she began to have trouble swallowing.

JOHN RINKA: We were more and more buying Frosties and milkshakes, yogurts.

VEDANTAM: They asked their sons to come home and live with them.

JOHN RINKA: Because she wanted her sons around. So they were all in the house.

VEDANTAM: In August of 2010, 16 months after Stephanie received the diagnosis, she and John went on a cruise. Near the end of the trip, they spent a day on a little island. John sat on the beach, while Stephanie snorkeled. He knew it was probably the last time she would ever do this. She stayed out a long time, just floating there in the warm, blue water.

JOHN RINKA: It was kind of one of those moments that made you feel good and made you feel sad at the same time.

VEDANTAM: When they returned, Stephanie had a catheter placed in her chest so John could give her twice-daily infusions of an experimental drug. Her swimming days were over. She was getting weaker and thinner. But still, they were together. John remembers with pleasure the aimless afternoon drives.

JOHN RINKA: And we would play Stephanie's music. She loved to listen to Richie Havens.

(SOUNDBITE OF SONG, "FREEDOM")

RICHIE HAVENS: (Singing) Freedom, freedom, freedom, freedom, freedom...

VEDANTAM: By the end of 2010, Stephanie could no longer really talk. But they still went to the beach. John would hold her arm, and Stephanie would search for shark teeth.

JOHN RINKA: I would bend down and pick it up and show it to her. And she'd, you know, nod her head, you know, or - she made - she was making sound. Yeah - you know, like that - you know, like a slurred speech of yes or no. And if it was a shark tooth, I'd put it in my pocket. We ended up with over 7,000 shark teeth by the time this was over.

(SOUNDBITE OF MUSIC)

VEDANTAM: On one of those beach outings the winter of 2010, Stephanie was walking a few steps away from John. Suddenly, she toppled over.

JOHN RINKA: I was stunned because I'd never seen her fall. She couldn't throw her hands out. She just fell. The best description would be as if you tipped over a sack. And there was a thud and a jar (ph) as she hit. And it was like a totally helpless fall.

VEDANTAM: It's hard to imagine what it was like for Stephanie, losing control of her body. John tried to keep everything positive - to focus on what was good in their lives.

JOHN RINKA: I was very reticent to make anything that was uncomfortable brought to her attention at that time.

VEDANTAM: In John's mind, there was no need of it.

JOHN RINKA: We weren't dying that day.

VEDANTAM: So there were no deep discussions.

JOHN RINKA: Everything was positive. Everything was for comfort. And everything was for peace. There was not talk about death.

VEDANTAM: There was not talk of death. That conversation they'd been engaged in for decades receded. In fact, the only time the subject was raised was when they attended ALS clinics at the hospital.

JOHN RINKA: Every time we were there and the subject of living will came up or, you know, death arrangements, it was a question asked. Would you like to go over your arrangements? And she'd say, no. She shook her head no. And they wouldn't go there, you know. So that was a little bit of a surprise to me. But again, I was hanging my hat on she knows what she's going to do.

VEDANTAM: It was one thing to talk about end-of-life issues when they were hypothetical. All those years of conversations they'd had were earnest and serious, but they were intellectual. Now, death was in the room with them. Talking about it no longer felt brave and rational. It felt cruel. The abstract had become vivid, and that changed everything.

It was also the case that there was little time or space to sit down and have an actual conversation. Everyone was overwhelmed by the daily challenges that kept piling up. John and Stephanie's youngest son was still in college. Bills kept pouring in, the medical equipment required tending, and Stephanie kept getting sicker. Among other things, she was losing weight fast. When it became critical, in February 2011, she had a feeding tube inserted.

JOHN RINKA: Every two hours, I was feeding her. You know, there's just so much. And then amidst all this, you want her to be comfortable.

VEDANTAM: The feeding tube had been a big decision. Some ALS patients choose hospice, where the focus is on controlling pain and suffering, not extending life. But Stephanie was still smiling at John's awkward efforts at nursing and they were still taking those long walks on the beach.

JOHN RINKA: She'd have her long tube tucked in her pants. And when we got back from our walk at the beach, we would get in the car. And I drove off to the side. And I'd get out, and I'd fix up the liquid and do what I had to do in the back. And then I would take her tube out, and I'd recline her a little in her front seat, and I would feed her.

VEDANTAM: One of the biggest challenges turned out to be not the feeding tube, but the mucus. As the disease took its toll, Stephanie had a harder and harder time swallowing and coughing. Those actions need muscles, too. So fluids and mucus simply flowed down her throat, sometimes into her lungs.

JOHN RINKA: Because she had no gag reflex, she would grab a tissue and put it down her throat as far as she could go and then let the tissue moisture suck it up. She would throw it in a box and accumulate dozens and dozens of tissues because she would do that until she felt she was clear.

VEDANTAM: John says the fact that Stephanie would do this - put her own hand down her throat to clear out the congestion - was a clue, if he'd been able to see it.

JOHN RINKA: I didn't see how much she wanted to live.

(SOUNDBITE OF MUSIC)

JOHN RINKA: And I think, to be honest with you, she was not preparing herself for death. All of her effort went into her living. And I'm not going to say she was afraid to die. I'm going to say she wanted to live. And there's a big difference. She wasn't working out of a panic. She was working out of a determination.

VEDANTAM: In a way, she had always been like this. Her son, Jason, remembers when he was in the fifth grade playing in a baseball game. His team was down something like 8-0. He went to bat, and there was his mom waving her hands and acting like victory was within reach.

JASON RINKA: It was completely out of proportion to the stakes involved and what was happening in the game. And that was that was pretty much her in a nutshell. You know, there was always a chance to do something up until the end.

(SOUNDBITE OF MUSIC)

JOHN RINKA: You know, there was no giving up. And there was no - it was never too late. And things could always turn around and happen for you at any time.

(SOUNDBITE OF MUSIC)

VEDANTAM: So maybe in Stephanie's mind, she thought there would be a way to turn this disease around - maybe a new drug or a clinical trial with positive results. The thing, is you never know for sure what is going to happen. Sometimes you save a kid from a car crash and he is paralyzed from the neck down. Another time, the kid you saved shows up a month later, totally fine, and thanks you for saving his life.

But in that moment, when you have to decide what to do, you don't know which way it's going to go. You have to guess. The Rinka family had to make one of those guesses on a Wednesday at the end of June, 2011. John and Jason were watching TV. Stephanie was in her recliner. She seemed to be struggling to clear her throat. Jason asked if she was OK. She indicated she wasn't.

JOHN RINKA: She said, no. And then Jason - do you have to go to the emergency room? And she gave one of her really weak thumbs-up.

VEDANTAM: They rushed her to the ER. Doctors got right to work suctioning out her lungs.

(SOUNDBITE OF MACHINE SUCKING)

VEDANTAM: They were full of fluid.

JOHN RINKA: She was drowning.

VEDANTAM: As soon as her lungs were cleared, they began to refill.

JOHN RINKA: And then they started running the tube down again.

VEDANTAM: John stayed close to Stephanie as a respiratory therapist cleared her lungs a second time.

JOHN RINKA: The tech or the respiratory therapist asked her - didn't consult me, didn't say anything, just kind of spoke over her and said, Mrs. Rinka, if we have to trach you and put you on a ventilator, do you want that? Now, this came out of the blue.

(SOUNDBITE OF MUSIC)

VEDANTAM: Jason Rinka was there too, not quite believing what he was hearing.

JASON RINKA: He said, they're going to have to check the tube. And they're going to have to pull out mucus. And you're going to have to be - you know, you're permanently going to be attached to this machine that's going to do your breathing for you. And it's not going to be pleasant.

VEDANTAM: This was not how John or Jason had imagined this moment arriving, but here it was - the question that put to the test John and Stephanie's core beliefs. The choice was clear.

(SOUNDBITE OF MUSIC)

VEDANTAM: Either Stephanie went on a ventilator and continued to live, or she didn't and would die.

JOHN RINKA: And she nodded yes. And that's when my jaw dropped.

VEDANTAM: Stephanie wanted to be put on life support.

JOHN RINKA: What? No. I just wanted to say, no, she doesn't. No, she doesn't want that. She said, yes.

VEDANTAM: The procedure would have to be scheduled. And John decided he'd bring it up with her again in the morning. Stephanie struggled to breathe all night.

JOHN RINKA: But then she finally got some sleep near dawn. And when she woke up, she seemed to be in pretty good spirits. And I returned to the question. I said, Steph, I don't know if you remember last night, but they asked you if you wanted to go on a ventilator, be trached, get a trachea and go on a ventilator. And I looked at her. You didn't mean that, did you? She shook her head yes in a very slow nod. I said, now, let me get this straight. You want to go on a ventilator? Yes.

(SOUNDBITE OF MUSIC)

JOHN RINKA: I'm in a place where I never thought I'd go. And remember, I had prepared for death. It was on my mind every day. So I was much further down the road than she was, and certainly much further down the road than my sons were.

VEDANTAM: John thought that with a little time, Stephanie would choose the course she had always wanted. But the same day, Stephanie went into respiratory failure. She was rushed to the ICU and then into surgery. She emerged attached to a ventilator.

(SOUNDBITE OF MUSIC)

JOHN RINKA: I did not ever, in a million years, think that this would happen.

VEDANTAM: John says, if Stephanie had been unconscious when they first got to the hospital and they'd asked him whether they should put her on a ventilator or choose hospice, he would have had no doubts. He would have said hospice.

JOHN RINKA: I would have felt like I did the right thing. And had they done that and we got the hospice, and she managed to regain consciousness, I would have talked to her. And I would have told her what was occurring. And I think I could have kept her peaceful. And I think she could have left in dignity, peacefully, and not having brought upon herself and her family just misery.

(SOUNDBITE OF MUSIC)

VEDANTAM: Jason Rinka has asked himself many times why he didn't follow his mother's long-standing instructions on what she wanted at the end of her life. She had seen too many patients in misery. Don't let that happen to me, she'd said. But at the hospital, it was almost as if he didn't have one mother. He had two. There was the rational mom, the experienced nurse. And then there was the mom who was fighting for breath, wanting to live until tomorrow. Jason knows why he stayed silent.

JASON RINKA: We weren't ready, and she wasn't either. What I didn't consider at the time was that, you know, you might never be ready until it's to an unbearable point.

VEDANTAM: This is hindsight. At that moment, they were all caught up in the momentum of what was happening. While Stephanie was recuperating in the hospital, John and the boys prepared the house. They turned the dining room into what looked like an ICU. There was a hospital bed, tubes and monitors, a generator and medical supplies.

JOHN RINKA: We had all the gauges that read her vital signs. There was a blood pressure reading. There was a heart rate monitor. There was a O2 set reading from her finger that was constantly monitoring her oxygen saturation in her blood.

VEDANTAM: Three weeks after she was hooked up to the vent, Stephanie came home. An entourage came with her. For the first three days, insurance covered the cost of round-the-clock respiratory care. It gave everyone time - not enough, but some - to learn how to monitor the new machines and to suction out Stephanie's airways. She was able to communicate a little using an iPad. On the fourth day, the vent team packed up and left. One nurse, Paula, remained on duty.

JOHN RINKA: Well, it was about, let's say, 10 o'clock at night. We're on our own for the first time, so we're not comfortable with anything. You know, it's - nothing's routine yet.

VEDANTAM: And then, almost immediately, something went wrong.

JOHN RINKA: And Stephanie...

(SOUNDBITE OF BEEPING)

JOHN RINKA: Her O2 set starts to drop.

VEDANTAM: What does that mean?

JOHN RINKA: Her oxygen saturation in her blood - OK, so let's - we better suction her.

VEDANTAM: The suction device was not easy to use.

JOHN RINKA: It demands that you, of course, dislodge the trach. And you run the tube down her trachea, but there is a hole at your thumb that you have to cover to create the vacuum.

VEDANTAM: John tried to suction her out. The nurse tried, too.

JOHN RINKA: Nothing's happening. We're not getting any mucus through it.

VEDANTAM: Stephanie's oxygen levels kept dropping. All four sons were in the room now. Jason was standing near the end of the bed watching but unable to do anything.

JASON RINKA: And at some point, she started - I guess it was like choking, although with the trach, it's somewhat different. And she started to turn - I want to say it was almost - she started to turn blue.

VEDANTAM: John dialed 911. He frantically tried to explain what was going on. The Rinkas live near a local firehouse, so help arrived quickly. Two firefighters and five medics poured into the small room.

JOHN RINKA: My sons were there standing kind of in a semicircle at the end of the bed behind them, so they were kind of squished near the end of the room. So the room, I believe, had 11 people in it.

VEDANTAM: By that point, Stephanie's oxygen had nearly bottomed out. She needed desperately to have her lungs cleared, but the medics couldn't figure out how to do it.

JOHN RINKA: One of the men took the suction, and then - I'm trying to remember if Paula showed him, but he knew how to get into the trach now. But he couldn't operate the suction tube because he said it wasn't one like - I'm not used to this kind of suction tube. There was a pause, as if I was expecting somebody else to say, oh, let me see it, or someone else to have an alternative, which - I can't imagine what it would be.

And when I sensed that there was no reaction to that, that's - for want of better terms, I kind of lost my temper. I said, give it to me, and I probably didn't even say it that nicely. Give me it. And then probably, my next words were, give it to me, goddammit. I have this weird determination, anger. What? You're kidding me. Give me that. We're not just going to sit around and watch her die like this. This isn't right. Give me that. And I started - it's a horrible thing to say - like, jamming it down there. But I forcefully went in there, and I would suction it and pull it out.

VEDANTAM: Stephanie was still blue.

JOHN RINKA: And kind of splayed out on the bed. It - she looked like you walked into a room and there was a person who was about to expire.

VEDANTAM: And this is, in some ways, what you absolutely did not want for Stephanie, right?

JOHN RINKA: This just seemed like this isn't how it should end.

(SOUNDBITE OF MUSIC)

VEDANTAM: Finally, something gave way. The suctioning began to work. They got the mucus out.

JOHN RINKA: So we put her immediately back on the ventilator. The trach was hooked up. Her airway was clear. So she was now breathing again.

VEDANTAM: Her oxygen levels quickly went back to normal. Her color returned. As quickly as the crisis had started, it ended. The EMTs packed up. One of them patted John on the back as he left.

JOHN RINKA: I didn't look at them, and I went back into my room. I sat down. I, you know, had one of those office swivel chairs. I leaned back in it, and I said, what the hell have I done? What the hell just happened? What is going on? What did I just do? Did I save a life? No. I brought a person back to this life?

VEDANTAM: For Jason Rinka, one of the hardest parts was the realization that tomorrow would be even worse.

JASON RINKA: To know that the day that you happened to be on was the best that it was going to be, and that that would be the case for the next day, and the next day, that it would always be - the moment that you were experiencing was as good as it would ever be again.

(SOUNDBITE OF VENTILATOR PUMPING)

VEDANTAM: After that night, Stephanie lived on, kept alive by machines. But something had changed. She didn't use her iPad anymore. She didn't watch TV.

JOHN RINKA: I asked doctors, do you think there was brain damage because she lost so much oxygen? Well, we don't think so. It wasn't that long of a time, blah, blah. I can't believe that.

VEDANTAM: Every day, they did what needed doing. John would play music and hold Stephanie's hand. He would talk to her about their sons. She would just lay there in a kind of half-stupor.

JOHN RINKA: I would come in in the morning at 5 with my cup of coffee, and I'd sit down and say, good morning, sweetheart. And I would sit next to her, and I'd put my hand over - there's a little railing, you know, on these hospital beds. And I'd reach down, and I'd put her hand in my hand and hold it. And she could lift her hand, like, from her elbow. She could lift her hand about six or eight inches. And the only thing she'd ever do was - would take my hand, and she'd kind of bounce it off the mattress. And I could never figure out what that meant. I still had that feeling - did I betray her?

(SOUNDBITE OF MUSIC)

JOHN RINKA: I still had that feeling, what's going to end - how is this - how can we get this to end? I still had that feeling, how long does this go on? And I watched my sons have to do everything for their mother, you know? I always thought, you know, sons shouldn't have to hold their mother on the toilet and take care of all the things that have to be taken care of. That's hard. That's a real heavy lift. And that's a - it's - and that's also an indignity. That's their mom.

(SOUNDBITE OF MUSIC)

VEDANTAM: Finally, in mid-October, 3 1/2 months after Stephanie had been put on a ventilator, a hospice nurse stopped in to check on her. This same nurse had come before. Each visit, she'd spend time alone with Stephanie. Her job was to find out whether Stephanie was ready to die.

JOHN RINKA: I don't know what her methods were, but she would come out and say, it's my feeling that she's not open to going to hospice yet.

VEDANTAM: On this visit, she stayed with Stephanie a long time.

JOHN RINKA: And she came out. And she said, John, I believe - I am satisfied that your wife wants to go to hospice.

(SOUNDBITE OF MUSIC)

VEDANTAM: For John, the words brought relief. He signed the paperwork immediately. It was agreed that Stephanie would go to hospice on Monday. They would have one last weekend with her at home.

(SOUNDBITE OF MUSIC)

VEDANTAM: Each of the boys spent some time alone with her, and then it was John's turn.

JOHN RINKA: I sat and held her hand and told her I loved her and told her what a great mother she was and how much fun we had. And I said, you know, it's been quite a ride that you let me ride with you with, you know? And I did not mention death. I didn't say goodbye and all of those things. I can assure you of that.

VEDANTAM: Late that night, a nurse came by and started a morphine drip. Stephanie lapsed into unconsciousness. The next day, the boys and John stayed close.

JOHN RINKA: We just spent the afternoon looking at the pictures and going through this life of a mother who loved her children and who was adventuresome and gave them the gifts of creativity and the gifts of wonder and, you know, who had a - you know, had an impulsive streak that they learned to admire and, you know, was exciting. And it was just that time, you know? That's how we spent our time.

VEDANTAM: On Monday, Stephanie was transferred to hospice. The ventilator was removed. Very slowly, her oxygen levels began to drop. By the next morning, it was clear that she was near death. John stepped out of the room while a nurse put Stephanie into a clean and comfortable nightgown. John had picked it out himself. A few minutes later, the nurse came out.

JOHN RINKA: Mr. Rinka, I'm sorry. I think your wife is dead. And I got up, and I walked into the room, and she was. I mean, you could tell right away. I could tell right away that she was no longer alive, that Stephanie Rinka was no longer.

(SOUNDBITE OF MUSIC)

VEDANTAM: In the months and years after Stephanie's death, John and Jason have reflected deeply on Stephanie's final days and the choices they made as a family. John now sees Stephanie's illness as a two-part event. There was before the ventilator.

JOHN RINKA: I would relive with any one of those days. I would relive any one happily - any of them. Just pick any one random week. I will be glad to relive it. I will enjoy it. I will savor it much as I did just then.

VEDANTAM: And then there's after the ventilator.

JOHN RINKA: There's not one day - not one after the time she said to go on the vent - not one day you would - you could pay me enough money to go back and visit.

VEDANTAM: Jason Rinka feels the same, but he says the ordeal has left him with some insight into dying.

JASON RINKA: I think the mistake is in thinking that we know how we're going to react to everything, you know? If I were to ask you, you know, at the end of your life, would you like to suffer for 2 1/2 years or would you prefer to go out peacefully on your own terms in hospice?, I can't imagine anyone saying, well, I would take the suffering. But when you're in that moment - and I've thought about this so many times. She wasn't necessarily thinking rationally. She was thinking about - well, tomorrow - you know, we can deal with the trach tomorrow. We're going to deal with it tomorrow. You know, I'll have tomorrow. I'll have the next day - like, not right now.

VEDANTAM: Jason says that when he imagines himself confronting a terminal illness, he understands the dilemma his mother faced.

JASON RINKA: I know what I would say now. I would say, I don't want to go through that. I don't want to be trached. I don't want to be a burden on my family. I don't want to suffer anymore. I want to - let me, you know, end it now while my family still has these memories of me. And then I imagine being given that choice sitting across the room from my 4-year-old daughter and being asked, are you ready to leave this, you know - or across from my wife and being told that this is it, so are you ready to say goodbye to these two people that you love so much?

(SOUNDBITE OF MUSIC)

VEDANTAM: As the tools of science and medicine have made it possible for us to extend life, many of us believe we can make rational choices about when to use these tools and for how long. We imagine that we will use medical interventions only to limit the awfulness of death when, in fact, these interventions may end up prolonging it.

We believe that, with forethought and planning, we can force suffering to yield to rationality and logic. Many of us succeed, but many families discover that reason is puny in the face of death. Despite our best intentions, despite all that we know and understand, fear and confusion and love conspire to make neat choices messy and easy decisions difficult. We come to realize there isn't just one person inside each of us. There are many, and these different versions of ourselves have very different desires.

(SOUNDBITE OF BRIAN FLORES' "IRON LUNG")

VEDANTAM: This week's show was produced by Jenny Schmidt and Parth Shah. It was edited by Tara Boyle and Thomas Lu. Our team includes Laura Kwerel and Rhaina Cohen. Special thanks to Ken Campbell at NPR member station WHQR in Wilmington, N.C.

Our unsung hero this week is Joana Petrescu. Joana works in a lab researching ALS. We reached out to her with questions about the disease and the medical equipment that's used to help patients and their families. Thank you for sharing your thoughtful insights, Joana.

(SOUNDBITE OF BRIAN FLORES' "IRON LUNG")

VEDANTAM: For more HIDDEN BRAIN, you can follow us on Facebook and Twitter. If you like this episode, please be sure to share it with a friend. If you want to subscribe to my newsletter where I share personal updates about the show, news about HIDDEN BRAIN events and insights about human behavior, go to news.hiddenbrain.org. Again, that's news.hiddenbrain.org. I'm Shankar Vedantam, and this is NPR.

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