Josie's Story: A Mother's Inspiring Crusade to Make Medical Care Safe

By Sorrel King

The “wrenching but inspiring” true story of a tragic medical mistake that turned a grieving mother into a national advocate (The Wall Street Journal).
 
Sorrel King was a young mother of four when her eighteen-month-old daughter was badly burned by a faulty water heater in the family’s new home. Taken to the world-renowned Johns Hopkins Hospital, Josie made a remarkable recovery. But as she was preparing to leave, the hospital’s system of communication broke down and Josie was given a fatal shot of methadone, sending her into cardiac arrest. Within forty-eight hours, the King family went from planning a homecoming to planning a funeral.
 
Dizzy with grief, falling into deep depression, and close to ending her marriage, Sorrel slowly pulled herself and her life back together. Accepting Hopkins’ settlement, she and her husband established the Josie King Foundation. They began to implement basic programs in hospitals emphasizing communication between patients, family, and medical staff—programs like Family-Activated Rapid Response Teams, which are now in place in hospitals around the country. Today Sorrel and the work of the foundation have had a tremendous impact on health-care providers, making medical care safer for all of us, and earning Sorrel a well-deserved reputation as one of the leading voices in patient safety.
 
“I cried . . . I cheered” at this account of one woman’s unlikely path from full-time mom to nationally renowned patient advocate (Ann Hood). “Part indictment, part celebration, part catharsis” Josie’s Story is the startling, moving, and inspirational chronicle of how a mother—and her unforgettable daughter—are transforming the face of American medicine (Richmond Times-Dispatch).

• Language: English
• Publisher: Open Road Integrated Media
• Release date: Sep 14, 2010
• ISBN: 9780802198983

Book preview

1

I was draining the spaghetti at our home in Richmond, Virginia, Josie sat in her swing playing with her little blue bear.

The phone rang and I could hear the excitement in Tony’s voice when I picked up. A few weeks earlier he had been asked to run his bank’s sales trading desk. It was a great opportunity for a thirty-two-year-old, but meant moving to Baltimore, where the company was headquartered. He was there now, in search of the perfect home. He had called to tell me he had found it.

The house is old and definitely needs some work, but the land around it is beautiful, he said.

So, is it a total dump or what? I asked, pouring the spaghetti sauce onto the noodles.

Well, yeah sort of, he admitted. He told me it had been a barn in the 1800s and then, in 1920, it had been converted into a house. It’s got green shingles and huge windows with that old, wavy glass that you like. If we want it, we need to sign the contract today.

But what about the inside? I asked.

We can check it out during the inspection. If we wait until then, we’ll lose it. It’s the land. There’s something about it that’s kind of magical. It reminds me of Bruce Farm.

Bruce Farm? It reminds you of Bruce Farm?

Yeah, it does. It really does, he said. You’re going to fall in love with this place.

In 1939, my mother’s parents, in search of a summer escape from the city life of Washington, DC, found it when they stepped foot onto an old farm that sat at the top of the Blue Ridge Mountains in Loudoun County, Virginia. The huge stone house with flagstone terraces, called the Big House, was surrounded by sprawling open lawns of Kentucky bluegrass. Fieldstone walls separated the manicured lawns from the pastures that were grazed by Black Angus cattle and horses. But the thing that took my grandparents’ breath away when they stood on the farm for the first time was the view. From the front porch, I came to see and love what they saw that day: a pale green lawn gently sloping down to a stone wall, above which a panoramic view of multiple shades of blue burst as far as the eye could see, making you feel as if you were looking over the ocean. With a slight squint, you could see dairy farms, little towns, and country roads. With a telescope you could see the Washington Monument in the solid, earthy valley. This was God’s country, and its name was Bruce Farm.

Bruce Farm was where my mother and her sister spent their summers and weekends, and as children my siblings and I did, too. It was a place where we were taught, like my mother had been, the meaning of hard work. Our mornings were spent weeding the vegetable garden, mucking out stalls, creosoting fences, and blazing trails. When the work was done we’d pull on our bathing suits, lace up our work boots, and run as fast as we could, with towels flying like superhero capes, across the lawn, over the stone wall, and down the dirt road to jump into the cool pond. Bruce Farm held a special place in all of our hearts.

Tony had been to Bruce Farm, and it got to him the same way it got to me. So, I could tell, as he described what he saw walking around the property in Baltimore, that he had fallen for the place for the same reasons that he knew I would, and that no matter how dilapidated the house was it would become our new home.

Josie, it looks like we’re going to live in an old green barn. What do you think about that? I said, plopping a zwieback biscuit on the tray of her swing. She liked the Swiss cardboard-like crackers and sucked on them until they became mushy enough to squeeze in her fists. When she wanted a fresh one, she’d throw the wad of mush at Trapper, the smelly, thirteen-year-old Lab that no one in the family paid attention to anymore except Josie, who adored him. He’d catch the mush that came flying his way and she’d laugh from her swing, kick out her feet, and dangle her chubby zwieback-encrusted fingers in front of him. He’d lick them clean.

Josie was the youngest of four, our caboose. When I was a little girl, I always wanted to have four children. Maybe because I was one of four it was the perfect, even number, not too big, not too small. I loved being part of a big family. Everyone always had someone to play with; no one was ever left out. A life like The Brady Bunch or Eight Is Enough was right up my alley: the more confusion, the more chaos, the better.

With the birth of each of our children, driving home from the hospital was like Christmas morning. Everything was magical. But with Josie, there was more. It was July 3, a typical sweltering, humid, Virginia summer day. My mother insisted on driving, so the three of us—Tony, two-day-old Josie, and I—sat in the back seat as she slowly—ten miles below the speed limit, holding her breath, gritting her teeth, gripping the steering wheel—made her way down the highway.

I looked at Josie’s tiny cheeks as she lay swaddled in the pink blanket that the hospital had given us. She had brown eyes and lots of brown hair with a cowlick that threw part of her hair straight up. Somehow, we had wedged her into the car seat without waking her. I was making mental notes, thinking that I had better tuck this away in the memory bank because this was it. No more babies. Josie completed us. I looked at Tony, who was smiling as he gazed down at Josie, probably having the same thought. Jack, Relly, and Eva were at home waiting for their new little sister. Soon we would all be together, at home for the first time. Four children. Perfect.

Richmond was home for me, where I had grown up and where my parents still lived, along with my brother, Mac, and sister Mary Earle. My younger sister Margaret was right up the road in Washington, DC. Tony and I had spent the previous year building a house in the country just outside of town, on a pretty slice of land next to my parents. From our house the children could walk down a little hill and then up a little hill and be at their grandparents, Big Rel and Pop’s doorstep.

We had loved our home with its dark gray shingles and front porch that faced the western sky; nothing but horse pastures and hay fields framed our view as the sun set every evening. I had planted a bed of perennials and a tiny Carolina jasmine vine with hopes that the vine would climb up the front pillar of the house and shade the porch with fragrant yellow flowers. We had lived there for a little over a year when Tony was offered the promotion in Baltimore.

Our life in the countryside of Virginia was perfect, but Tony and I both agreed that we were too young to say to ourselves: this is where we’ll be forever. The children were not yet entrenched in school and so we decided to take a chance. It would be an adventure, we told ourselves. We can rent the house in Virginia out and if we don’t like Baltimore we can come home, Tony promised me. And so we decided to leave our family and friends and the home that we had worked so hard to build, and start a new life in Baltimore.

A few weeks after Tony had signed the contract, we drove to Baltimore to look at our new house—a house I had never seen. My parents took care of Jack, Relly, and Eva, and we took Josie so that I could continue nursing her. Tony and I had been to Baltimore together once before and had spent no more than a few hours with the realtor, driving around the neighborhoods, trying to get a feel for the place. Here we were, buying a house, knowing practically nothing about the city.

It was early October when we turned onto Kayhill Lane, in Baltimore. Through the changing leaves I saw a rolling lawn topped by a pretty, green-shingled farmhouse, shaped like a saltbox, with a gambrel roof and an awkward haybale-pitching window in the center.

In the mailbox we found a note from the current owner.

Dear Tony and Sorrel,

I hope this old house provides you with many happy memories. In the early 1900s, it was a barn and was called Ashline.

Sincerely,

Elizabeth Cunningham

A house with a name. This was going to be good. I strapped Josie into her front carrier and we headed in with the realtor.

It was inspection day and lots of people scurried about carrying clipboards. The living room was amazing: high ceilings, an old mantelpiece, and a bay window flanked by huge windows, each with twelve panes of beautiful, old, wavy glass, just like Tony had said. It helped that Mrs. Cunningham, who hadn’t moved out yet, had good taste, and this room was a showcase of her antiques and artwork. The dining room was equally as elegant, with two large French doors that opened out onto a redbrick terrace. This was definitely a grown-up house, and I was not quite sure what we were doing in it. I was beginning to wonder why no one else had bought the place.

The realtor saved the worst for last—the worst being the rest of the house. The kitchen was tiny, split into three little sections. There was no place for a kitchen table and hardly any room to cook. Most appalling of all, there was green carpet everywhere. As we moved upstairs the situation did not improve. The bathrooms had various wires sticking out, the bedrooms were small, and the hallways were slanted, giving the doorways a cockeyed look. The basement had signs of water damage. Ashline was not looking so hot anymore.

Do you think there’s any way we can get out of this? I whispered into Tony’s ear.

It’s not so bad. We can live with it and then fix it up, he said as Josie reached for him. He took her from me and led me outside. You’re going to love this part.

Hearing Tony, the realtor took his cue. Don’t you love it? he asked a little too enthusiastically, leaning close to me with bright, excited eyes. I’ve got the name of a great contractor who can fix some of this stuff, he added, holding the front door open for me.

The land was spectacular and as I walked around looking at the old boxwoods, the pretty dogwoods, the tulip poplars, the ash tree that longed to have swings hanging from its branches, and the rolling lawns I could see why Tony had fallen for the place. Along with the house came a little barn that backed on to Lake Roland, an old city reservoir that had lots of walking paths around it. The view out of every window made you feel as if you were in the country, yet the schools were five minutes away and there was a Starbucks practically within walking distance.

Should we go for it? Tony asked, handing Josie back to me.

As we stood on the redbrick terrace looking over the lawn, I could feel a hint of Bruce Farm about the old place. I told him I was in if he was.

What do you think of your new house, little monkey? Tony said, squeezing Josie’s yellow-socked feet as he leaned down to give her a kiss on the cheek. He put his arm around me and we stood there, the three of us. I think we’re gonna like it here, he said.

As we headed to the car the inspectors informed us that we better take a good look at the Terminix contract because there was definitely some termite damage in the front portion of the house.

Don’t worry, the realtor said. My contractor does termites, too.

2

We settled into our new life in Baltimore. Jack, Relly, and Eva were happy at their new school, Tony was enjoying his job, and I stayed busy at home with Josie, trying to fix up the old house. Although I was liking Baltimore, I missed Richmond terribly. It was a happy surprise when, one day in late January of 2001, we pulled into the driveway to find a green Explorer with Virginia plates parked in front of the farmhouse. Hey guys, what’s that license plate say? I asked.

Five-year-old Relly leaned up front to get a closer look. Bbb-iiii-gggg, she said, sounding out each letter as her kindergarten teachers had taught her. Rrrr … eeeee …

Jack, her brother, who was a year older, quickly unrolled his window and craned his neck to get a closer look. He was not about to let her beat him to it.

Jack, let Relly figure it out. She’s almost got it, I said, as I pulled the dark blue Suburban up next to the Explorer.

Big Rel! It says Big Rel. That’s Big Rel’s car. Big Rel is here! he blurted out.

Big Rel, that’s right! Relly added excitedly as she struggled to climb out of the car. She and Jack raced to the house as three-year-old Eva trailed behind, trying her best to keep her blue fleece blanket up off the ground with one hand while sucking a finger on her other. I unbuckled seventeen-month-old Josie from her car seat and followed them into the house, carrying all of the backpacks, coats, and snack wrappers that they had left behind. My mother—or Big Rel as the children had nicknamed her—had surprised us with a visit.

My mother was, and still is, a beautiful woman. In her younger years people said she looked like Jackie O. Some said she was prettier. I know I should have called, she said, bending over to hug the children, then standing up to take Josie from me, but Pop was out of town so I thought I’d drive up and see what you guys were up to. The children sat on the sofa with their grandmother and began telling her about their new school, their new bedrooms, and how I had let them paint the old kitchen cabinets before the workmen took them out and put them in the Dumpster.

We don’t have a kitchen anymore, Jack said.

We get to go out to dinner all the time, Relly added as Eva, still sucking her finger and holding her blanket, wedged herself onto Big Rel’s lap next to Josie, who tried unsuccessfully to push her away.

She hadn’t been to see us since we had started renovations on the old green-shingled farmhouse, which was still a work in progress. I gave her a tour, pointing out where new walls would be going, where doors and windows would be placed, and where the new kitchen would be. She carried Josie, stepping over two-by-fours and piles of plywood with Jack, Relly, and Eva following behind.

This looks like more work than building a house from scratch, she said. How on earth are you going to live like this?

Let’s just finish the tour, I said, leading her through the framing of the family room, mudroom, and bathroom.

We showed her the old, still-intact dining room, which was now serving as kitchen, family room, dining room, and play room.

Isn’t this nice and cozy, I asked as I began laying kindling and logs in the fireplace. It’s like living in a cabin. I struck a match and lit the fire.

How long will this take? she asked.

I don’t know, six months or so.

She looked suspiciously at the makeshift stove and the milk crates filled with flour, sugar, and cereal boxes. I recognized this look, her head cocked, brows furrowed, and mouth twisted; it was the same one she had used when I was a teenager and wore feather earrings and ripped jeans.

The children sat down to color and start their homework as Josie pushed the ON button to her little music cube and began her knee-buckle dance. She had gotten the toy for Christmas and loved dancing to the "I love you, you love me" Barney song. After ten minutes of it being played over and over it began to drive us all crazy. We had searched for the volume control but there was none.

Jack marched over, grabbed the toy from Josie, and turned it off. Josie shrieked, grabbed a handful of his hair, and burst into tears. Screaming, Jack tried to dislodge himself, but Josie pulled harder. I pried back her little fingers and released Jack from her iron grip. She cried until I picked her up and let her push the button back on.

You’re spoiling her. You should put her in time-out, Jack said.

You’re right, but she’s so little, and look how cute she is. You used to do the same thing when you were her age, and you turned out okay.

Big Rel announced she was going to take a bubble bath and that whoever showed her where there was a tub that actually worked would get to pour the bubbles in. They all raced upstairs, leaving me alone with the Barney song pulsing in my ears.

The children loved sitting on the floor and talking to Big Rel as she lay back in the bath in her skirted bathing suit, covered up to her neck in bubbles. Eva and Relly brought in their Barbies—the ones that had not yet had all their hair cut off—for shampooing. Big Rel let them pour more bubbles in and told funny stories. This time it was even more of a treat because she was using a bathroom that had never been used before. It was across the hall from Josie’s room and had been closed for renovations. There wasn’t much in it that worked other than the old tub. Josie brought in all of her bath toys including her favorite, a little blue airplane.

At about six, Tony arrived with take-out Thai food and was opening up a bottle of wine when my mother reappeared with the children all in their pajamas. Big Rel, it’s good to see you, he said, handing her a glass of wine. What do you think of the house?

I think you all have your work cut out for you, she said, taking a sip of the wine as they stood together in front of the fireplace.

I know, but when it’s all done it’ll be great, he said. Next year we’ll have a big Thanksgiving with you and Pop and all the cousins.

Josie wiggled off my lap and walked over to her music square. Jack and Relly were fed up with the song, and as it started to play they went upstairs to our bedroom to watch a cartoon.

My mother adored Tony and when the two were together I was often a fly on the wall. I listened to their conversation, sometimes interjecting, as I dished the Thai food onto paper plates.

Where’d Josie go? asked Tony.

We hadn’t noticed that the music had stopped.

I think she went upstairs to watch TV, I replied.

I was walking up the steps to check when I heard Josie let out a piercing scream. I started running. My legs couldn’t carry me fast enough. She was standing next to the bathtub, screaming, with her eyes squeezed shut and arms jutting out from her sides. She was soaking wet. I ripped off the pajamas. Her skin was bright red and starting to blister. I grabbed a towel, wrapped her in it, and looked in the tub. I saw the water, and the airplane. I stuck my hand in. It was hot, scalding hot. I screamed for Tony to call 911.

I tried to piece together what had just occurred. Josie must have followed her siblings upstairs and, instead of joining them to watch Rugrats, she had taken a detour to the bathroom to find her blue airplane. She had probably wanted to see it float again, so she turned the knob closest to her little arm. The one with the H on it. Then she must have climbed in with her airplane. I felt my throat tighten. I had taken my eyes off her.

The ambulance arrived and the paramedics took Josie from me, laid her down, and unwrapped her. The skin on her legs and arms was red and oozy. She lay crying as the paramedics wrapped her in gauze. They put her in the ambulance and I

jumped in, too, screaming for Tony to get me a bottle of milk. It was her bedtime, and she always had a bottle before going to sleep. He shoved the bottle in my bag and handed it all to me. I’ll follow you down there, he said. The ambulance doors slammed shut.

As the ambulance backed out of the driveway I could see the children and my mother through the window. They were sitting on the floor by the fireplace and she was handing Jack a board game. They were scared and confused, and their grandmother was trying to comfort and distract them.

Everything is going to be just fine, she was probably saying. Josie’s going to a hospital and some nice doctors are going to fix her, and she’ll be home soon. Let’s play Chutes and Ladders, and I’ll make some hot chocolate. Eva, you can go first since you’re the youngest.

They must have been relieved. Of course Josie was going to be fine. Big Rel said so. It was as if time had stopped in that room, as if nothing else existed beyond the windows in the cold dark.

3

When we arrived at Johns Hopkins Bayview Medical Center we were met by two police officers, who walked alongside me as we headed toward the emergency room. They began asking me questions, but as I stopped to answer them I watched Josie and the paramedics disappear around a corner. I ran down the hall, chasing them, yelling to the police officers that I had to be with my daughter.

I knew very little about hospitals but one thing I did know was that Johns Hopkins was the best. I had never been in an emergency room before. It was a narrow room divided into sections by curtains. While we waited for the ER doctor, a nurse gave Josie a lollipop with pain medication. She quietly sucked on it while I stroked her head. I could hear the doctors, nurses, and paramedics in the surrounding bays taking care of other patients, one with a gunshot wound, one with severe chest pains, and another who had been in an automobile accident. The medical staff spoke quickly, the tension in their voices seeming to rise and fall each time a paramedic brought in a new patient. Controlled chaos surrounded me as Josie

Reviews for Josie's Story

[steve02476 · Rating: 5 out of 5 stars]

Excellently written and full of important discussions about how we live and die.

[kavinay-677830 · Rating: 5 out of 5 stars]

In a way, this is a brutally tough read. But that's because Gawande does an excellent job of making you comprehend the helpless sense of imprisonment that besets the elderly and terminally ill.

The concept of the patient's conditions for treatment, "I want to be able to watch football and eat chocolate ice cream," is a profoundly simple but effective way to diminish the burden on your loved ones. There's so much in this book along these lines and while the subject matter is grim, it fills a massive void in end of life wisdom that I doubt many of us would otherwise encounter until it's too late for our loved ones.

[paroof · Rating: 4 out of 5 stars]

A well-written book on an important topic. I found both the brief history of nursing homes and assisted living facilities quite enlightening. Gawande acknowledgement that the topic of mortality is difficult for everyone, including physicians, is important.I highly recommend this book, but especially so for those of us with elderly parents or who are caregivers.

[tuusannuuska-1 · Rating: 5 out of 5 stars]

"The ultimate goal is not a good death but a good life - all the way to the very end."

Personally, I'm not at all good at facing my own or other people's mortality. This book takes a thorough look at the reality of facing the fact that you won't live forever, and in some examples in the book, not even all that many months. The focus is in ensuring that what time you have left, you use on what matters most. And especially on the value of realising when it is more beneficial to just live as fully as possible for as long as you are able, as opposed to resorting to desperate measures that will only prolong pain for everyone.

I'm not going to say this was an enjoyable read, because I ended up crying for a lot of it, but this is a very thoughtful and thought provoking read that will more than likely stay with me for a long time. (Full disclosure, this also gave me a lot of anxiety.

[castlelass · Rating: 4 out of 5 stars]

“THIS IS A book about the modern experience of mortality—about what it’s like to be creatures who age and die, how medicine has changed the experience and how it hasn’t, where our ideas about how to deal with our finitude have got the reality wrong.” – Atul Gawande

We do not like to think about our mortality but assessing in advance about what is most important to us is extremely relevant to how we spend our last days, assuming we are fortunate enough to avoid accident or sudden death. Gawande draws upon his medical background, experiences with end-of-life situations, research, and case studies to make a case for investigating what the patient wants rather than dispensing information and letting the patient decide, which is what is often done now. Some people value quality of life over taking extraordinary means to survive a short time longer, often at the cost of more pain and suffering.

The author makes a strong case for increasing individual freedoms in assisted living and nursing home arrangements, recommending earlier palliative care, and training doctors and other medical professionals in asking the right questions to help the patient make informed choices. He begins to discuss allowing individuals end-of-life decisions but does not go into much depth. Though it is obvious this book is written by a doctor, Gawande does a good job of avoiding medical jargon and explaining his perspective in straight-forward manner. He takes the subject matter to a personal level by sharing his father’s decline and eventual death, and how his family handled it. He advises holding those uncomfortable but necessary conversations with loved ones before a crisis arises.

I particularly liked the list of questions to ask in dealing with a terminal situation. I also appreciated learning more about hospice and that it is not solely related to imminent death, as is widely believed. Though it’s not pleasant to read about death and dying, this book contains valuable and pragmatic advice. I found it informative and worthwhile.

[library_lin · Rating: 5 out of 5 stars]

After watching both my grandmothers, several aunts, and an uncle die from dementia, I’m concerned about end-of-life care because the solution of warehousing mentally and physically impaired older adults is not an adequate solution. The family can continue to work while knowing their elders are “safe.” But it does nothing to increase the quality of life that the safety allows.No one reaches age 60 without encountering cancers, heart attacks, and other disabling diseases in loved ones or yourself. For instance, I’ve lost a father, several uncles, and several aunts to cancer alone. Their ends are agonizing to watch.In Being Mortal, surgeon Atul Gawande confronts these and other issues of aging and fatal diseases with directness and honesty. He explains why the western health industry has wound up in its current state. But he, like many others, is troubled by the system’s inadequacies and unintentional cruelty towards those it aims to help.In this book, he offers many refreshing examples of alternatives, like adding animals, children, and gardens to the elderly’s environment. He suggests letting those living out their final years make bad decisions for their lives. After all, they deserve the dignity of choosing how to live as they grow increasingly infirm. The biggest fear most have is losing their independence in daily life. He also explains why he is a big fan of hospice.This book is well-written, clear, and full of stories that most of us can relate to. Some of his real-life examples are horrible to contemplate, like the stage IV lung cancer detected in the mother of a newborn baby. The book was published in 2014, so some of it is likely outdated. I would love for Gawande to revise it. Nevertheless, I highly recommend it to anyone who will face end-of-life choices one day, and that includes us all.

[jpe9 · Rating: 4 out of 5 stars]

Everyone should think about the issues of mortality raised by Gawande in this book!

[terryweyna · Rating: 5 out of 5 stars]

My father died a year ago just a few days after his 89th birthday. It made me start thinking about my own mortality, now that I've reached the age of 65. So I picked up this book.It is a revelation. Gawande has so much to say about the limits of medicine and the importance of knowing what you really want from your last days in this life. Doctors, he says, tend to give you information and then ask you to make a decision, and their information tends to be limited to ways to extend your physical life, rather than how to make you happy in your final days. Maybe that third course of chemotherapy isn't really what you want if it poses little possibility of extending your life meaningfully and makes you so sick you can't enjoy your family in the time you have left.I recommend this book unreservedly. It's not a dry treatise at all; Gawande fills his book with stories while imparting a ton of strategies for older people and dying people. I'm so glad I read it, and I think you will be, too.

[dele2451 · Rating: 5 out of 5 stars]

This should be as essential to medical school as knowing Grey's Anatomy and using a stethoscope. As a cancer survivor I wish I would have been given a copy of this book the day I was diagnosed.

[lynnb_64 · Rating: 4 out of 5 stars]

This is a well-written, thoughtful book. And once I got past the chapter that explained that my teeth will fall out as I age and my soft tissues will harden as they absorb calcium from my weakening bones, it wasn't nearly as depressing as I'd feared. The idea that people should determine for themselves what "quality of life" means and how much they value it over living because science and medicine enables it was, in one way, revolutionary to me. But, in another way, it wasn't. I'd have reached this conclusion on my own if I'd thought about it. But many of us don't think about it, or wait until it's too late and that's why this is an important book. Another thing this book showed me is that death is not a universal experience. Yes, we all die, but we do it differently.The one thing I found lacking in the book was discussion of dementia. It is increasingly present in our society and it makes conversations about quality of life much more difficult, if not impossible.I think the book was also interesting as a look into the author's personal development as he learned how to be the best doctor he could be.My biggest take-away is that the Golden Rule (do unto others as you would have them do unto you) isn't all that great. It should be do unto others as they would like.

[cataloger623 · Rating: 5 out of 5 stars]

The epilogue of Being Mortal sums itself by saying its about the struggle to cope with the constraints of our biology, with the limits set by genes and flesh and bone. Medical science has given us remarkable power to push against these limits.., but again and again I have seen the damage we in medicine do when we fail to acknowledge that such is finite and always will be. We think our job is to ensure health and survival, But is really to enable well being. What is your understanding of the situation and its potential outcomes? What are your fears and hopes? What are the trade-offs you are willing to make? What is the course of action that best serves this understanding?

The epilogue is the best summation of the book. Dr Gawande uses his case studies to illustrate the challenges that both doctors and patients face as they deal with aging. The book covers impact of our industrialized urban culture on how we care for our aging parents. He takes the reader to origins of the nursing home industry, its evolution to the assisted living movement and finally the hospice movement. He does an excellent job in explaining what difficult discussions need to be done between both the patient and doctors and between the patient and their family. Finally he tackles end of life issues including assisted suicide.

I found the book engaging and readable. Dr Gawande does not use medical jargon. The book reads like a biography of his father taking us from his initial illness to his death. During this journey Dr Gawande intersperses dissuasions of his other patients to further illustrate his points.

[mahallett · Rating: 5 out of 5 stars]

death sounds terrible in this book but it's about what you can deal with and what you cannot.

[ssperson_1 · Rating: 4 out of 5 stars]

4.5 stars

Hooooboy, this book is kind of tough, especially the first part. The litany of things that naturally happen to the human body as it ages is pretty damned depressing. And that's if everything goes well. If you have any sort of illness or infirmity, it just gets worse.

Thankfully, it progressed to a happier note, namely that we need to de-medicalize aging and death. Stop and consider that just because there is a medical procedure/treatment/etc. for an illness, that doesn't mean we should use it. There's no one right answer for everyone. But I liked what the author learned from the Hospice people, about asking the individual what they want out of their life right now, and how they want their end to be handled.

I think this should be required reading for every human, but especially those with elderly relatives who will reaching this point, and the tough questions will need to be answered.

I listened to the audiobook, and the narrator was very good.

[drfuriosa · Rating: 3 out of 5 stars]

This book brought up a lot of interesting points and challenged me to think about end-of-life conversations differently. The writing style is a bit dry in the first half, and it could be hard to understand where Gawande's ideas were going at times.

[runningbeardbooks · Rating: 4 out of 5 stars]

Sobering. Good companion read to Never Say Die by Susan Jacoby

[kristelh_15 · Rating: 5 out of 5 stars]

This book was not anything new to me having studied aging in undergrad and medical sociology in grad school but it was a great review and reminder and well written. I also have experienced many of the topics and if I haven't experienced them fully, I will be as I approach those last last years of my own life. I have lived through the nursing home boom, the assisted living and have also been involved with hospice during the end stages of my own parents lives. Both of my parents came to live with me (the daughter of the family) and lived out their final days in our home. I did not live close enough to them to let them stay in their own home which did grieve my mother. I was able to be at my dad's bedside as he let out that final breath. I also agree that assisted suicide is the opposite of success and a failure. The goal should be a good life to the very end and not a good death. The dying role is to share memories, pass on wisdom and keepsakes, settle relationships, establish legacies, make peace with God, and ensure that those who are left behind will be okay. (pg249). Part of being able to have these opportunities is to know how to ask the right questions and not let the medical authority be in charge of the decisions. They can offer us information and they can give us options but if they are not as astute as the author is they might not ask the right questions. We need to be prepared to help direct those questions so that we can live our lives well. The author didn't always ask the right questions but he learned. He also had to be "listening". Some of the questions he would ask is "what were the person's goals, what the fears for the future were. Most really wanted time to be at home and do things that they most enjoyed. A lot of people end up choosing treatments that add to the pain, decrease quality of life and offer very little if any additional time. Quotes:"..we've decided that they (medical) should be the ones who largely defind how we live our waning days. For more than half a century now, we have treated the trials of sickness, aging, and mortality as medical concerns. Its been an experiment in social engineering, putting our fate in the hands of people valued more for their technical powers than for their understanding of human needs". I think this is the big failure even in this time of pandemic. We have allowed once again the medical to dictate how our family members will live and die without their family. How awful. There is nothing that justifies this. Family and a life lived well is the most important thing in my opinion. We will never get a chance to make it up to our loved ones either. We will not get those chances back.

[susandennis-139327 · Rating: 5 out of 5 stars]

This was a fascinating read. Gawande strips out the boring and hones in on the reality of dying the best way possible. He describes examples with what was done right and what was not and why and leaves you with good questions to ask yourself about how to know what matters for you and your loved ones in the end.

[jerry.yoakum · Rating: 5 out of 5 stars]

Good things to keep in mind as we age.

[markwhiting-479218 · Rating: 5 out of 5 stars]

Excellent.

[being_b-1 · Rating: 5 out of 5 stars]

I wish I had read Gawande's books before I had to see my husband through the wringer of medical treatment and hospitalisation. In deciding on treatments, it eventually became clear that the doctors' priorities for him were different than our own priorities. My husband survived and is mostly recovered, but the specter of future illness, debilitation, and hospitalisation looms. Being Mortal does a good job of parsing how the medical treatment model of illness and health can fail in cases of chronic ill health and mortality, and what we might use in its place.

[al9g · Rating: 4 out of 5 stars]

As a pastor, which also carries responsibilities as a caregiver, I have asked the question on more than one occasion, do we keep people alive because they have a quality of life that can be enjoyed, or because we can? Modern medicine is a godsend of miracle cures and health restoring technology but interspersed with that is questions about longevity and care and how we as caregivers and as a culture address these issues. In a well written book with personal anecdotes and stories from his experience as a medical professional Gawande addresses these issues and more. In an engaging style of narrative storytelling he moves us from our earlier cultural understandings of elder care to our modern systems and helps the reader explore and reflect on the differences between longevity and quality of life. It is both deeply interesting read as well as an invitation to consider what the future holds for care for those we love who are advancing in age. Well worth the read!

[bookworm12_1 · Rating: 5 out of 5 stars]

This is an incredible example of nonfiction. It’s so well written that even though I wasn’t sure I was interested in the subject matter at first, I couldn’t put it down. The author is a doctor and discusses end-of-life care. He cites research, his own experience with patients, and his experience with his father‘s death. It’s a powerful book, driven by real examples of hospice and nursing care, mixed with the history and cultural differences. It was hard to read about the people who chose active assisted living housing over emergency medical intervention. They were able to live full lives while others went through painful procedures that treated problems instead of preventing them.The conclusion was that our society has a hard time dealing with mortality. We strive to prevent death, even when it means destroying quality of life. There was so much better results for the people who embraced preventative care and acceptance of terminal diagnosis. Highly Recommended!“Old age is a continuous series of losses.”

[carmenere_1 · Rating: 5 out of 5 stars]

What an amazing and enlightening read! Dr. Gawande begins this book by reminding the reader how things used to be, back to the days when aging parents would move in with one of their children or the unmarried child would continue to live as well as care for aging parents. He also illustrates this point when he discusses an elder in his own family back in India. Extended family members would be there to accommodate his needs and he would be revered for his wisdom, often consulting him for making major life decisions. Fast track to current times. Nuclear families have replaced large families. Children are far less likely to remain at home let alone in the same city. What happens to our elders today?The options are live independently, assisted living or when that's no longer feasible, a skilled nursing facility. Gawande explains each option, its pros and cons. He then touches upon a subject that is not pleasant but must be considered. When does intervention become too much? When does too much intervention effect a persons quality of life?Gawande proceeds to discuss the options an individual has available to them for end of life care. Hospice and palliative care don't necessarily mean the end is in sight. It is about enjoying the time you have left. Sometimes, Gawande, writes of patients he's worked with to lay out the options while allowing them to make informed decisions. Very interesting and thought provoking book. Read it.

[erwinkennythomas · Rating: 5 out of 5 stars]

Being Mortal critiques the medical profession and the way it treats older and terminally ill patients. Atul Gawande deals with these issues and writes quite candidly about such patients whom he himself at times was unsure how to treat. He questions some medical procedures which doctors are using to keep patients alive. And he explains how doctors and palliative care workers can help ailing and dying patients.

[greeniezona · Rating: 5 out of 5 stars]

This book has been on my shelves for ages, since Book Riot Quarterly included it in one of their boxes. Then a few months ago my friend recommended it. When my new doctor had me fill out a Five Wishes form and I spent a couple of days thinking about end of life decisions, I knew this had to be the next book I read.This book was exactly what I wanted at that moment. Really a quite thorough introduction to end of life care -- starting from why modern medicine is sometimes so ill-equipped to deal honestly or well with end of life, then running through several strategies and fixes people have attempted to make end of life more humane -- what was successful about them and what were some of the obstacles they faced, especially in bringing these solutions to the culture at large.Told through several examples of real people, the book also scaffolds what end of life decision making processes look like -- with input from the person dying, their family, and their doctors -- giving all sorts of examples of how to go through this process from any of those roles. Certainly no one looks forward to making these decisions for themselves or for a loved one, but I feel like just from reading this book I will have more ideas what questions to ask, what possible options to look for, and to be more ready and open to the conversations.One of those books that truly, clearly needs to be more widely read.

[pdebolt_1 · Rating: 4 out of 5 stars]

This is a difficult book to read because it deals with end-of-life issues in a frank way. Aging and death are in everyone's future, and this remarkable author reveals what medicine and and cannot do through myriad examples. Its messages are powerful.

[jean_roberts-980215 · Rating: 5 out of 5 stars]

Highly recommended.

[auntmarge64 · Rating: 4 out of 5 stars]

The author, a general surgeon, has spent his professional career trying to do what he was taught: fix his patients physically. Quantity of alternatives, not necessarily quality of life. It was assumed that longevity was worth any inconvenience and pain. A few years ago he began researching end-of-life care options with the goal of improving the lives of his elderly and end-stage patients. He consulted patients, geriatricians, pioneers in independent care programs, and hospice organizations, and provides the reader with a look at traditional nursing homes (and their history), home care and institutional alternatives, and trade-offs made by patients and families. His own father's illness and death provided him with a chance to put to use some of the techniques he'd learned. The nursing home chapters describe typical (and nightmarish) conditions, and it was all I could do to continue. But once the book turned to the alternatives being developed, I found myself less traumatized thinking of my own future. While traditional medical care might stress the goal of prolonging lives, this often leads to situations that are the opposite of what patients really want, which is, typically: avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete. (These issues become priorities not only to old people but to younger people who find themselves facing illness and end-stage disease.) In nursing homes, where the emphasis is on keeping patients physically safe, patients can feel imprisoned, without privacy or the right to make decisions about how to spend their time and with whom.Doctors are traditionally trained to offer fixes, including those which are more and more experimental or unlikely to help. They are not taught to suggest there might be more meaningful alternatives, and sometimes the end of treatment. The author learned to ask very ill patients several questions, which even he, with all his new knowledge and desire to improve matters, found extremely difficult to do:At this moment in your life:1. What do you understand your prognosis to be?2. What are your concerns about what lies ahead?3. What kinds of trade-offs are you willing to make? How much are you willing to go through to have a shot at being alive, and what level of being alive is tolerable to you?4. How do you want to send your time if your health worsens?5. Who do you want to make decisions if you can't?I was profoundly moved by the range of these questions and the responses they elicited. Clearly, patients aren't always thinking about the same things as other patients, or their families, or their health care workers. One striking result was that that families and doctors, finding themselves at a crisis moment in the patient's life, didn't have to make the hard decisions - the patients had already said what they wanted. An excellent overview of possibilities for anyone concerned with these issues.

[anitatally · Rating: 4 out of 5 stars]

A must-read for anyone with aging parents.

[adzebill · Rating: 5 out of 5 stars]

This book made me cry several times; contemplating one's own aging and mortality, and having Gawande narrate the end-of-life stories of his patients and his own father, was sobering and thought provoking