The Ventilator

[0] From NPR, this is Hidden Brain.

[1] I'm Shankar Vedantam.

[2] In 1950, a three -year -old girl from Tennessee contracted polio.

[3] Within days, Diane O'Dell couldn't walk.

[4] Then she couldn't breathe.

[5] Her life was saved by a miraculous, monstrous device, the iron lung.

[6] You are listening to the breath of life, as it is pumped by these tank respirators called iron lung.

[7] Over the years, new types of respirators allowed many polio patients to escape the iron lung.

[8] Not Diane.

[9] She had a spinal condition that made it her only option.

[10] So she stayed flat on her back and capsulated from the neck down in the long, noisy cylindrical tube for 58 years.

[11] In an interview shortly before her death, Diane said people often had the same blunt reaction about what they would want in her situation.

[12] Most of them say, I'd rather be dead.

[13] I couldn't live that way.

[14] I'd rather be dead.

[15] Nobody would rather be dead.

[16] They think at the spur of the moment, but there's always tomorrow.

[17] There is always tomorrow.

[18] Diane saw her choice very differently than the people looking in from the outside.

[19] It's one thing to say you would not want to live for 58 years.

[20] in an iron lung.

[21] But that is not the choice that confronted Diane.

[22] The choice was always, Do you want to see tomorrow?

[23] Today we look at how one family grappled with the same question.

[24] Over the decades, they talked deeply about the choices they would want to make in the face of an incurable illness or terrible injury.

[25] But when the time came to act on their beliefs, they discovered a question they hadn't considered.

[26] What if the seemings, rational choices you prefer when you're healthy no longer make sense to you when you're actually confronting death.

[27] Life, death, and our future selves this week on Hidden Brain.

[28] The Great Dining Hall at Kenyon College in Ohio looks like the interior of a church.

[29] Stained glass windows, soaring arches, huge oak tables.

[30] This is where John Rinka first met Stephanie Bowman.

[31] came strolling in with this magnetic force behind her.

[32] And her hair was long in Auburn, and she was striding, and she looked very confident.

[33] It was 1969.

[34] John was a senior, Stephanie, a freshman.

[35] A few days later, John ran into her again at a frat party.

[36] They started talking over beers.

[37] The conversation flowed and never really stopped.

[38] By the end of the evening, they'd shared a kiss and made plans to see each other again.

[39] She was just really, really fascinating and beautiful and different from anybody I'd ever met.

[40] And I just wanted to be around her.

[41] John was a force himself.

[42] He was one of the top college basketball players in the nation, which was extraordinary because he was only 5 '9.

[43] But he had a special gift.

[44] focus, and an immense capacity for hard work.

[45] He was known for his offensive skills and killer jump shot.

[46] That year was magic for both of them.

[47] John set a scoring record that remains on the NCAA books, averaging more than 40 points per game.

[48] Stephanie reveled in the feeling of being on her own for the first time.

[49] They were thriving.

[50] Both felt it.

[51] After graduation, John moved to Boston for a coaching job.

[52] Stephanie made regular trips to see him.

[53] Maybe she was concerned about me being out there, you know, single in Boston.

[54] I don't know.

[55] What John did know was that Stephanie made him happy.

[56] Stephanie decided she'd rather be with John than in college.

[57] She wanted to elope, and John agreed.

[58] On an April morning in 1971, they walked into Cambridge City Hall and said their vows before a justice of the peace.

[59] She was impulsive.

[60] I was game.

[61] I loved her.

[62] All I knew was that I wanted to be around this person because I thought life would be full.

[63] John was 22.

[64] Stephanie was 19.

[65] The fullness of life lay before them.

[66] Four years passed.

[67] It was now in 1975.

[68] John and Stephanie had left Boston and were living near Washington, D .C. to be close to Stephanie's ailing father.

[69] Stephanie was now a nurse.

[70] She worked in a hospital on a kidney transplant unit.

[71] John taught English and coached basketball at a local high school.

[72] Over the Christmas holidays, they flew to Milwaukee to celebrate the New Year with the Rinka clan.

[73] John hoped the visit would ease lingering tension around their City Hall marriage.

[74] John's dad had not been happy about it.

[75] On New Year's Eve, they all went out for a big dinner.

[76] And when we got home, turned New Year's, dad went to bed.

[77] Steph said, I'm going to go up.

[78] I stayed up with my mom.

[79] and talked.

[80] Quarter to one, my dad walked into the room and said, I feel awful.

[81] He was pale and struggling to breathe.

[82] Luckily, there was a nurse in the house.

[83] I went and got Stephanie.

[84] Stephanie came in and Mr. Rieke, Mr. Rieke, get down on the floor.

[85] And he was almost ready to pass out, so she got him down on our dining room floor.

[86] And she said, quick, call 911, call 911.

[87] John's dad stopped breathing.

[88] Stephanie started CPR.

[89] I could hear it counting.

[90] One, two, three, four, five, six, seven, eight, nine.

[91] Then she'd breathe.

[92] One, two, three, four, five, six, seven, eight.

[93] And she just kept at it, you know, and just kept at it.

[94] Until they came and relieved her.

[95] One, two, three, four, five, six, seven eight.

[96] That night, Stephanie saved John's father's life.

[97] But on the ambulance right, to the hospital.

[98] He suffered a second heart attack, and then another one in the ER, which led to a stroke.

[99] Finally, the doctor stabilized him.

[100] But as the family gave thanks, Stephanie pulled John aside.

[101] She warned him that his father might be forever changed.

[102] This is where I heard quality of life, and this is where I heard her espound about, you know, people, there's a point where people's life isn't worth living.

[103] And of course, these were shocking to me. think about that.

[104] That's where I really started to look at this and I looked at my father.

[105] And I thought, wow, okay, what's his life going to be like?

[106] Chester A. Rinka lived for another 10 years for which John is grateful.

[107] But the energetic baseball coach, the vibrant history teacher, he disappeared that night in the hospital.

[108] The man who reemerged was frail and vulnerable.

[109] It imprinted on me even more this idea of what happens after these moments when medicine can intervene successfully.

[110] The experience marked the beginning of an ongoing, decades -long conversation between John and Stephanie.

[111] They began to consider what it means to save a life at all costs.

[112] The questions they were discussing have long occupied patients, families, ethicists, and philosophers.

[113] What makes life worth living?

[114] Is there a point at which you can be alive, but not really, alive?

[115] Who decides when you reach that point?

[116] What if my definition of quality of life is different than yours?

[117] Over the years, there were other times when Stephanie and John's musings on life and death became urgent and real.

[118] Stephanie's father died of a heart attack.

[119] They lost a son right after he was born.

[120] They got to see life at its worst, but also at its best.

[121] They had four healthy sons.

[122] Stephanie loved being a mom, and John felt he'd found his calling as a teacher and a coach.

[123] They moved a lot, but to them, it was always an adventure.

[124] By 1995, they were living up in the mountains of North Carolina in an area known for both its beauty and poverty.

[125] Their old farmhouse looked out on a two -lane winding road.

[126] We're just about half a mile from what was called Laurel Gap.

[127] One Saturday afternoon, John was puttering around outside.

[128] Stephanie and the boys were inside.

[129] Suddenly, a car sped by, going way too fast.

[130] And then I heard the squeal of the tires, and then I heard the, you know, very clear and obvious crash into a tree.

[131] Stephanie heard it too.

[132] She flew out of the house and ran to the car.

[133] Inside were three teenagers.

[134] The two up front were okay.

[135] saved by the airbags.

[136] But the young man who had been in the back hadn't been wearing a seatbelt.

[137] And he was wedged underneath a dashboard.

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

[139] 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.

[140] Stephanie did what she'd been trained to do, what most of us would do in a moment like that.

[141] Do whatever it takes to try and save a life.

[142] Get to tomorrow.

[143] She moved slowly to get him out so that he could breathe, and then she sat there and held him until the ambulance arrived.

[144] But after the emergency cruise left, Stephanie didn't celebrate.

[145] All she could think of was is, John, I hope he's not paralyzed.

[146] I just hope he's not paralyzed.

[147] I hope I didn't make it worse.

[148] Some weeks later, John was at work one day at the local high school.

[149] And this kid came up to me while I was standing in the hall and said, please thank your wife for saving my life.

[150] It was a young man from the car crash.

[151] He'd not only survived, he was fine.

[152] It was the happy ending they'd all wished for.

[153] It showed John and Stephanie that heroic medical measures to save a life often do make sense.

[154] Stephanie had given another human being decades of tomorrows.

[155] There were other times, however, when Stephanie worried that the miraculous tools of modern medicine produced more harm than good.

[156] In her work with patients, Stephanie saw cases where medicine saved a life, but left a person in unending pain or on permanent life.

[157] support.

[158] When was the suffering too much?

[159] 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.

[160] Stephanie was always clear on what she would want in the same situation.

[161] She didn't want to live if it meant her quality of life was gone.

[162] She would say, John, just shoot me. Don't ever let me get to that point.

[163] just shoot me. I heard that.

[164] I heard that.

[165] I don't know how many times.

[166] She said the same to her oldest son, Jason, even when he was just a kid.

[167] 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.

[168] I don't ever want to end up like that.

[169] And that is a lot for a kid to take in.

[170] But I do distinctly remember her saying, this on multiple times.

[171] Don't, I don't ever want that to happen to me. Don't ever let that happen.

[172] Okay, mom.

[173] So it was clear.

[174] Everyone in the family knew it.

[175] 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.

[176] That was what she wanted.

[177] It was now 2008.

[178] Stephanie was 56 and John was 59.

[179] They had moved yet again, this time to Wilmington, North Carolina.

[180] John was still coaching and teaching.

[181] Stephanie had a nursing job two hours away in Raleigh.

[182] She worked weekends.

[183] One Sunday evening in June, John was reading in the living room, waiting for his wife to return.

[184] When she walked into the house, he says, she didn't bother with a greeting.

[185] She got right to the point.

[186] John, there's something wrong with my speech.

[187] I said, no, there's not.

[188] No, John, there's something wrong with my speech.

[189] I can feel it.

[190] I thought, well, Steph, I can't hear it.

[191] I mean, trust me, if I heard it, I would tell you.

[192] Okay.

[193] Stephanie let it go.

[194] But clearly, it was still on her mind.

[195] Whenever she had a free moment, she would go online.

[196] And try to diagnose what this could possibly be.

[197] An endocrinologist found a benign growth on her thyroid.

[198] But when Stephanie asked if it might be causing the speech problem, he responded bluntly.

[199] No, no, no. That's either mycinea gravis, multiple sclerosis, or ALS.

[200] None of those options was good.

[201] ALS seemed like the worst.

[202] It's a fatal neurological disorder that eventually shuts down muscle control, including the ability to walk, talk, even breathe.

[203] But it's extremely rare and affects men more than women.

[204] The odds were in Stephanie's favor.

[205] Still, even the idea of it terrified her.

[206] One night, as she was driving to Raleigh, she passed a billboard for the annual walk for ALS.

[207] And she called me immediately.

[208] I said, hey, Steph, what's up?

[209] John, what if I have ALS?

[210] I said, calm down.

[211] No, John, what if I have ALS?

[212] And I could hear the panic in her voice.

[213] I kept saying, oh, Steph, really, think about the odds.

[214] Come on, let's just see.

[215] And I did my rational thing that I had always done with her.

[216] I laid it out, you know, what the odds were.

[217] I'm doing it for myself as well, you know.

[218] And, but that had told me it was on her mind.

[219] They knew they'd have to keep searching for answers, but decided to wait until after Christmas.

[220] Finally, in February 2009, Stephanie made an appointment with a neurologist.

[221] John remembers that drive to the clinic.

[222] She's extremely somber, and she's listening to this mournful music.

[223] Shadows are falling, and I'm running out of breath.

[224] Keep me in your heart for a while.

[225] The music was from Warren.

[226] Zeevon's last album, which he made as he was dying.

[227] You know, this is a haunting mood.

[228] Let me see that crazy sun.

[229] The neurologist had two tests planned.

[230] One is done with electrodes on the surface of the skin.

[231] And they run a charge and they see what the reaction to that charge is.

[232] That measures that reaction.

[233] The neurologist didn't detect any problems.

[234] 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.

[235] The doctor started on Stephanie's right leg.

[236] And she inserts the needle and runs the charge.

[237] And Steph goes, how was that one?

[238] one.

[239] She goes, good.

[240] She goes up to the next point on the right leg.

[241] And she inserts the charge.

[242] And Steph goes, how was that one?

[243] Well, not that good.

[244] She goes to the third insertion.

[245] And Steph said, how about that one?

[246] No, not good.

[247] The neurologist continued inserting needles into Stephanie's abdomen, arms, even below her tongue.

[248] and got this full array of slow registration of muscle response.

[249] Stephanie was sobbing through the rest of that.

[250] She was just sobbing, trying to muffle.

[251] Then the neurologists delivered the words they knew were coming.

[252] She believed Stephanie had ALS.

[253] There's no hope.

[254] And every day you get worse.

[255] John and Stephanie drove home and started calling family.

[256] Stephanie was eventually diagnosed with a type of ALS that affects swallowing and speech first.

[257] She was told she most likely had somewhere between two and five years to live.

[258] So in typical Stephanie fashion, she got on with the living right away.

[259] She made a cross -country road trip with her two older sons, Jason and Matthew.

[260] They drove to L .A., 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.

[261] She took a cruise to the Caribbean with a friend.

[262] And then when she came back, she got in a van and took two of her sons down to Florida.

[263] They went to the Everglades and the Keys.

[264] They swam and snorkeled and collected shelves.

[265] And whenever they could, John and Stephanie went to a beach right near their home.

[266] A beautiful beach, Fort Fisher.

[267] You could walk it for miles.

[268] And that she loved.

[269] She just, that was her church.

[270] John had to make some changes as well.

[271] He retired from his job and got a long overdue hip replacement.

[272] He wanted to be healthy and strong for his wife because he was going to be there for her every step of the way.

[273] He knew exactly what he was aiming for.

[274] The most comfortable life, enjoyable life, until it's time to die, and then making sure she died with dignity.

[275] Dignity, peace, calm, they were all what I was working towards.

[276] Most of that first year after the diagnosis was good.

[277] It was nearly impossible to tell that Stephanie was dying.

[278] The only signal that something was wrong was her speech.

[279] People could now hear what for so long only she could hear.

[280] What did you notice about her speech?

[281] Slight slurs.

[282] Just slight slurs.

[283] You know, like one too many drink slurs.

[284] You know, you know, nothing significant.

[285] But as the months wore on, she began to have trouble swallowing.

[286] We were more and more buying frosties and milkshakes, yogurts.

[287] They asked their sons to come home and live with them.

[288] Because she wanted her sons around them.

[289] So they were all in the house.

[290] In August of 2010, 16 months after Stephanie received the diagnosis, she and John went on a cruise.

[291] Near the end of the trip, they spent a day on a little island.

[292] John sat on the beach while Stephanie snorkeled.

[293] He knew it was probably the last time she would ever do this.

[294] She stayed out a long time, just floating there in the warm blue water.

[295] It was kind of one of those moments that made you feel good and made you feel sad at the same time.

[296] When they returned, Stephanie had a catheter placed in her chest so John could give her twice -daily infusions of an experimental drug.

[297] drug.

[298] Her swimming days were over.

[299] She was getting weaker and thinner.

[300] But still, they were together.

[301] John remembers with pleasure their aimless afternoon drives.

[302] And we would play Stephanie's music.

[303] She loved to listen to Richie Havens.

[304] By the end of 2010, Stephanie could no longer really talk.

[305] But they still went to the beach.

[306] John would hold her arm, and Stephanie would search for shark teeth.

[307] I would bend down and pick it up and show it to her and she'd either nod her head.

[308] She was making sound 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.

[309] We ended up with over 7 ,000 shark teeth by the time this was over.

[310] On one of those beach outings, the winter of 2010, Stephanie was walking a few steps away from John.

[311] Suddenly, she toppled over.

[312] I was stunned because I had never seen her fall.

[313] She couldn't throw her hands out.

[314] She just fell.

[315] The best description would be as if you tipped over a sack.

[316] And there was a thud and a jar as she hit.

[317] And it was like a totally helpless fall.

[318] It's hard to imagine what it was like for Stephanie.

[319] losing control of her body.

[320] John tried to keep everything positive to focus on what was good in their lives.

[321] I was very reticent to make anything that was uncomfortable brought to her attention at that time.

[322] In John's mind, there was no need of it.

[323] We weren't dying that day.

[324] So there were no deep discussions.

[325] Everything was positive, everything was for comfort and everything was for peace.

[326] It was not talk about death 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 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'd shake her head, no. And they wouldn't go there, you know.

[327] So that was a little bit of a surprise to me. But again, I was hanging my head on.

[328] She knows what she's going to do.

[329] It was one thing to talk about end -of -life issues when they were hypothetical.

[330] All those years of conversations they'd had were earnest and serious, but they were intellectual.

[331] Now, death was in the room with them.

[332] Talking about it no longer felt brave and rational.

[333] It felt cruel.

[334] The abstract had become vivid, and that changed everything.

[335] It was also the case that there was little time or space to sit down and have an actual conversation.

[336] Everyone was overwhelmed by the daily challenges that kept piling up.

[337] John and Stephanie's youngest son was still in college.

[338] Bills kept pouring in.

[339] equipment required tending, and Stephanie kept getting sicker.

[340] Among other things, she was losing weight fast.

[341] When it became critical, in February 2011, she had a feeding tube inserted.

[342] Every two hours, I was feeding her.

[343] You know, there's just so much.

[344] And in amidst all this, you want her to be comfortable.

[345] The feeding tube had been a big decision.

[346] Some ALS patients choose hospice, where the focus is on controlling pain and suffering, not extending life.

[347] But Stephanie was still smiling at John's awkward efforts at nursing, and they were still taking those long walks on the beach.

[348] She'd have her long tube tucked in her pants, and when we got back from our walk at the beach, we'd 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.

[349] and I'd recline her a little in her front seat, and I would feed her.

[350] One of the biggest challenges turned out to be not the feeding tube, but the mucus.

[351] As the disease took its toll, Stephanie had a harder and harder time swallowing and coughing.

[352] Those actions need muscles, too.

[353] So fluids and mucus simply flowed down her throat, sometimes into her lungs.

[354] Because she had no gag reflex, she would grab a tissue and put it down in throat as far as she could go and then let the tissue moisture suckered up.

[355] 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.

[356] 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.

[357] I didn't see how much she wanted to live.

[358] And I think, to be honest with you, she was not preparing herself for death.

[359] 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 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 to nothing he went to bat and there was his mom waving her hands and acting like victory was within reach.

[360] It was completely out of proportion to the stakes involved and what was happening in the game and that was pretty much her in a nutshell.

[361] You know, there was always a chance to do something up until the end.

[362] 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.

[363] So maybe in Stephanie's mind, she thought there would be a way to turn this disease around.

[364] maybe a new drug or a clinical trial with positive results.

[365] The thing is, you never know for sure what is going to happen.

[366] Sometimes you save a kid from a car crash and he's paralyzed from the neck down.

[367] Another time, the kid you save shows up a month later, totally fine, and thanks you for saving his life.

[368] But in that moment when you have to decide what to do, you don't know which way it's going to go.

[369] You have to guess.

[370] The Rinka family had to make one of those guesses on a Wednesday at the end of June 2011.

[371] John and Jason were watching TV.

[372] Stephanie was in her recliner.

[373] She seemed to be struggling to clear her throat.

[374] Jason asked if she was okay.

[375] She indicated she wasn't.

[376] She said no. And then Jason, do you have to go to the emergency room?

[377] And she gave one of her really weak thumbs up.

[378] They rushed her to the ER.

[379] Doctors got right to work, suction out her lungs.

[380] They were full of fluid.

[381] She was drowning.

[382] As soon as her lungs were cleared, they began to refill.

[383] And then they started running the tube down again.

[384] John stayed close to Stephanie as a respiratory therapist cleared her lungs a second time.

[385] 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 take you and put you on a ventilator, do you want that?

[386] Now, this came out of the blue.

[387] Jason Rinka was there, too, not quite believing what he was hearing.

[388] He said, they're going to have to check the tube, and they're going to have to plow mucus, and you're going to have to be, you know, you're permanently going to be attached to this machine.

[389] It's going to do your breathing for you, and it's not going to be pleasant.

[390] This was not how John or Jason had imagined this moment arriving.

[391] But here it was.

[392] The question that put to the test, John and Stephanie's core beliefs.

[393] The choice was clear.

[394] Either Stephanie went on a ventilator and continued to live, or she didn't, and would die.

[395] And she nodded yes.

[396] And that's when my jaw dropped.

[397] Stephanie wanted to be put on life support.

[398] What?

[399] No. I just want to say, no, she doesn't.

[400] No, she doesn't want that.

[401] She said, yes.

[402] The procedure would have to be scheduled.

[403] John decided he'd bring it up with her again in the morning.

[404] Stephanie struggled to breathe all night.

[405] But then she finally got some sleep near dawn and when she woke up.

[406] She seemed to be in pretty good spirits.

[407] And I returned to the question.

[408] I said, Steph, I don't know if you remember last night, but they asked you if you wanted to go on a ventilator.

[409] be traked, get a trachea, and go on a ventilator.

[410] And I looked at her, you didn't mean that, did you?

[411] She shook her said, yes.

[412] In a very slow nod.

[413] I said, let me get this straight.

[414] You want to go on a ventilator.

[415] Yes.

[416] I'm in a place where I never thought I'd go.

[417] And remember, I had prepared for death.

[418] It was on my mind every day.

[419] So I was much further down the road than she was, and certainly much further down the road than my sons were.

[420] John thought that with a little time, Stephanie would choose the course she had always wanted.

[421] But the same day, Stephanie went into respiratory failure.

[422] She was rushed to the ICU and then into surgery.

[423] She emerged, attached to a ventilator.

[424] I did not ever in a million years think that this would happen.

[425] John says if Stephanie had been unconscious when they first could, 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.

[426] He would have said, hospice.

[427] I would have felt like I did the right thing.

[428] And had they done that and we got to 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 think I could have kept her peaceful, and I think she could have left in dignity, peacefully, and not having brought upon her self and her family just misery.

[429] 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.

[430] She had seen too many patients in misery.

[431] Don't let that happen to me, she'd said.

[432] But at the hospital, it was almost as if he didn't have one mother.

[433] He had two.

[434] There was the rational mom, the experienced nurse.

[435] And then there was the mom who was fighting for breath, wanting to live until tomorrow.

[436] Jason knows why he stayed silent.

[437] We weren't ready, and she wasn't either.

[438] What I didn't consider at the time was that you might never be ready.

[439] until it's to an unbearable point.

[440] This is hindsight.

[441] At that moment, they were all caught up in the momentum of what was happening.

[442] While Stephanie was recuperating in the hospital, John and the boys prepared the house.

[443] They turned the dining room into what looked like an ICU.

[444] There was a hospital bed, tubes and monitors, a generator, and medical supplies.

[445] We had all the gauges that read are vital signs.

[446] There was a blood pressure reading.

[447] There was a heart.

[448] heart rate monitor.

[449] There was a O2 set reading from her finger that was constantly monitoring her oxygen saturation in her blood.

[450] Three weeks after she was hooked up to the vent, Stephanie came home, and Anturaj came with her.

[451] For the first three days, insurance covered the cost of round -the -clock respiratory care.

[452] It gave every one time, not enough, but some, to learn how to monitor the the new machines and to suction out Stephanie's airways.

[453] She was able to communicate a little using an iPad.

[454] On the fourth day, the vent team packed up and left.

[455] One nurse, Paula, remained on duty.

[456] Well, it was about, let's say, 10 o 'clock at night.

[457] We're on our own for the first time, so we're not comfortable with anything.

[458] You know, nothing's routine yet.

[459] And then, almost immediately, something went wrong.

[460] And Stephanie, her O2SAT starts to drop.

[461] What does that mean?

[462] Her oxygen saturation in her blood.

[463] Okay, so we better suction her.

[464] The suction device was not easy to use.

[465] It demands that you, of course, dislodge the trache and you run the tube down her trache, but there is a hole at your thumb that you have to cover to create the vacuum.

[466] John tried to suction her out.

[467] The nurse tried too.

[468] Nothing's happening.

[469] We're not getting any, we're not getting any mucus through it.

[470] Stephanie's oxygen levels kept dropping.

[471] All four sons were in the room now.

[472] Jason was standing near the end of the bed, watching, but unable to do anything.

[473] And at some point, she started, I guess it was like choking.

[474] Although with the trache, it's somewhat different.

[475] and she started to turn, I want to say it was almost, she started to turn blue.

[476] John Dial 9 -1 -1.

[477] He frantically tried to explain what was going on.

[478] The Rinkas lived near a local firehouse, so help arrived quickly.

[479] Two firefighters and five medics poured into the small room.

[480] 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.

[481] So the room, I believe, had 11 people in it.

[482] By that point, Stephanie's oxygen had nearly bottomed out.

[483] She needed desperately to have her lungs cleared.

[484] But the medics couldn't figure out how to do it.

[485] One of the men took the suction, and I'm trying to remember if Paula showed him, but he knew how to get into the trache.

[486] No, but he couldn't operate the suction tube because he said it wasn't one like, I'm not used to this, I'm not used to this, kind of suction tube.

[487] 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.

[488] And when I sensed that there was no reaction to that, that's, for want of better terms, I kind of lost my temper.

[489] I said, give it to me. I probably didn't even say it that nicely.

[490] give me it and then probably my next word or give it to me god damn it i have this weird determination anger um what you're kidding me give me that we're not just going to sit around and watch or 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 force fully went in there, and I would suction it and pull it out.

[491] Stephanie was still blue.

[492] And kind of splailed out on the bed.

[493] She looked like you walked into a room, and there was a person who was about to expire.

[494] And this is in some ways what you absolutely did not want for Stephanie, right?

[495] This just seemed like this isn't how it should end.

[496] Finally, something gave away.

[497] The suctioning began to work.

[498] They got the mucus out.

[499] So we put her immediately, back on the ventilator.

[500] The trache was hooked up.

[501] Her airway was clear.

[502] Um, so she was now breathing again.

[503] Her oxygen levels quickly went back to normal.

[504] Her color returned.

[505] As quickly as the crisis had started, it ended.

[506] The EMTs packed up.

[507] One of them patted John on the back as he left.

[508] I didn't look at them and I went back into my room.

[509] I sat down.

[510] I had one of those office swivel chairs.

[511] I leaned back in it and I said, what the hell have I done?

[512] What the hell just happened?

[513] What is going on?

[514] What did I just do?

[515] Did I save a life?

[516] No. I brought a person back to this life.

[517] For Jason Rinka, one of the hardest parts was the realization that tomorrow would be even worse.

[518] 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.

[519] After that night, Stephanie lived on, kept alive by machines.

[520] But something had changed.

[521] She didn't use her iPad anymore.

[522] She didn't watch TV.

[523] I asked doctors, do you think there was brain damage because she lost so much oxygen?

[524] Eh, we don't think so.

[525] It wasn't that long of a time, blah, blah.

[526] can't believe that.

[527] Every day, they did what needed doing.

[528] John would play music and hold Stephanie's hand.

[529] He would talk to her about their sons.

[530] She would just lay there in a kind of half -stupor.

[531] I would come in in the morning at five 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.

[532] There's a little railing, you know, on these hospital beds.

[533] And I'd reach down and I'd put her hand in my hand and hold it.

[534] And she could lift her hand, like from her elbow, she could lift her hand about six or eight inches.

[535] And the only thing she'd ever do was, would take my hand, and she'd kind of bounce it off the mattress.

[536] And I could never figure out what that meant.

[537] I still had that feeling, did I betray her?

[538] I still had that feeling, what's going to end?

[539] How is this, how can we get this to end?

[540] I still had that feeling, How long does this go on?

[541] And I watched my sons have to do everything for their mother.

[542] No, 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.

[543] That's hard.

[544] That's a real heavy lift.

[545] And that's also an indignity.

[546] That's their mom.

[547] Finally, in mid -October, three and a half months after Stephanie had been put on a ventilator, a hospice nurse stopped in to check on her.

[548] This same nurse had come before.

[549] Each visit, she'd spent time alone with Stephanie.

[550] Her job was to find out whether Stephanie was ready to die.

[551] 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.

[552] On this visit, she stayed with Stephanie a long time.

[553] And she came out, And she said, John, I believe, I am satisfied that your wife wants to go to hospice.

[554] For John, the words brought relief.

[555] He signed the paperwork immediately.

[556] It was agreed that Stephanie would go to hospice on Monday.

[557] They would have one last weekend with her at home.

[558] Each of the boys spent some time alone with her.

[559] And then it was John's turn.

[560] And 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.

[561] I can assure you of that.

[562] Late that night, a nurse came by and started a morphine drip.

[563] Stephanie lapsed into unconsciousness.

[564] The next day, the boys and John stayed close.

[565] 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 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.

[566] On Monday, Stephanie was transferred to hospice.

[567] 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 night count John had picked it out himself a few minutes later the nurse came out Mr. Rinka I'm sorry I think your wife is dead and I got up and I walked into the room, and she was.

[568] I mean, you could tell right away.

[569] I could tell right away that she was no longer alive, that Stephanie Rinka was no longer.

[570] 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.

[571] John now sees Stephanie's illness as a two -part event.

[572] There was before the ventilator, I would relive any one of those days.

[573] I would relive anyone happily.

[574] Any of them.

[575] Pick anyone randomly.

[576] I will be glad to relive it.

[577] I will enjoy it.

[578] I will savour it, much as I did just then.

[579] And then?

[580] There's after the ventilator.

[581] There's not one day, not one, after the time she said to go.

[582] on the vent, and now one day you could pay me enough money to go back and visit.

[583] Jason Rinker feels the same, but he says the ordeal has left him with some insight into dying.

[584] I think the mistake is in thinking that we know how we're going to react to everything.

[585] Do you know, if I were to ask you, you know, at the end of your life, would you like to suffer for two and a half years, or would you prefer to go out peacefully on your own terms and hospice?

[586] I can't imagine anyone saying, well, I would take the suffering.

[587] But when you're in that moment, and I've thought about this so many times, she wasn't necessarily thinking rationally.

[588] She was thinking about, well, tomorrow, you know, we can deal with the trick tomorrow.

[589] We're going to deal with it tomorrow.

[590] You know, I'll have tomorrow.

[591] I'll have the next day.

[592] Not right now.

[593] Jason says that when he imagines himself confronting a terminal illness, he understands the dilemma his mother faced.

[594] I know what I would say now.

[595] I would say I don't want to go through that.

[596] I don't want to be traked.

[597] I don't want to be a burden on my family.

[598] I don't want to suffer anymore.

[599] 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 four -year -old daughter.

[600] And being asked, are you ready to leave this?

[601] you know, or across from my wife and being told that this is it.

[602] So are you ready to say goodbye to these two people that you love so much?

[603] 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.

[604] 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.

[605] We believe that with forethought and planning, we can force suffering to yield to rationality and logic.

[606] Many of us succeed, but many families discover that reason is puny in the face of death.

[607] Despite our best intentions, despite all that we know and understand, fear and confusion and love conspire to me. make neat choices messy and easy decisions difficult.

[608] We come to realize there isn't just one person inside each of us.

[609] There are many, and these different versions of ourselves have very different desires.

[610] This week's show was produced by Jenny Schmidt and Parth Shah.

[611] It was edited by Tara Boyle and Thomas Liu.

[612] Our team includes Laura Querell and Raina Cohen.

[613] Special thanks to Ken Campbell at NPR member station W .H. you are in Wilmington, North Carolina.

[614] Our unsung hero this week is Joanna Petrescu.

[615] Joanna works in a lab researching ALS.

[616] We reached out to her with questions about the disease and the medical equipment that's used to help patients and their families.

[617] Thank you for sharing your thoughtful insights, Joanna.

[618] For more Hidden Brain, you can follow us on Facebook and Twitter.

[619] If you like this episode, please be sure to share it with a friend.

[620] 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 .hidnbrane .org.

[621] Again, that's news.

[622] dot hiddenbrain .org.

[623] I'm Shankar Vedantam, and this is NPR.