taking a pulse the pitfalls of modern medicine. some of the top tracks that take place of this festival

will be held in this room so i do have these brochures if you're interested in the other speakers of related topics with the situation of modern medicine and in the political and personal situation because we have had such a great partnership to put together this program and went to think that she vanities at vanderbilt and also received support so we thank them as well. the author of today's session is katy butler author of "knocking on heaven's door" the path to a better way of death." before she wrote the book but she will be discussing her words already reached many people in the work had also been published in such diverse outlets as "the new yorker" in the best buda

writing. many suspect we heard her voice to the essay web broke with father's heart. she described i remember a the day i read it cover the story of her aging parents and how and when and why the doctors put a pacemaker in her father against their wishes. but it was the fourth most e-mail story from "the new york times" that year that is how much attention it got and how many people needed to hear that story. it picks up on that to show their readers a bigger picture part memoir impart investigated a journalism and asks a basic question has modern medicine in the frequent quest to avoid

death at all costs, literally, also created a great deal of suffering along the way? colors are deal has become a rallying cry for the 24 million u.s. caregivers adult children who are overwhelmed and overlooked by a profit driven health care system that puts the high-tech treatments before the and home health care. "knocking on heaven's door" has done a lot of attention in and people want to hear this story a best seller in san francisco ian denver and other regional list in dash she noted in recent correspondence this isn't bad for a book that has death in the title in the first time book author and also writing her first book at age 64. [laughter] [applause] i am pleased to introduce

our author katy butler speaking about "knocking on heaven's door." [applause] >> i just want to check the sound. is it working? you can hear? the book is about some complicated and difficult conversations as a culture we have not been having a and we really need to have a and conversations that are frightening and daunting also have an opportunity for deep being -- deeply spiritually satisfying to lessen the suffering that people are combing through with the last phase of their life. three-quarters of us say we want to die at home but only one-quarter of us do. and most die in hospitals and nursing homes and 1/5 of

people die in the intensive care unit this is about as heralding a death that i can imagine anyone inventing because they are either strap down or drug so they don't tear up the tubes that bind them to the earth. i think it is very important for me to make clear that i am not arguing for neglecting the people we love and the last phase of their life we have a medical system that is biased to carrying a hand against carrying. for example, my poor dad had a major stroke and 79. he was given a pacemaker that we were pressured into he needed a hernia surgery

he would not get clearance unless he had won it was a slow heartbeat but unfortunately it has long-term implications long after what looked like the no-brainer. as he descended into dementia where i had to coach him to take his slippers off before he put his shoes on and another was suffering deeply with exhaustion in the grieving as she cared for this damage man that she loved so deeply. i saw the implications of how a little medical decision can have long-term implications and to maximize everyone's suffering and i could not rest on tully wrote the book and explored

how the medical system got to this point. for example, medicare pays $7,500 for my father's pacemaker but it would only pay the family doctor who was supposed $54 to a very serious discussion of this was a good idea. my father really benefited from speech therapy in the aftermath of medicare only paid $1,500 per year in he had to prove he was improving it was not just to maintain. it is that penny wise pound foolish baez that funnels to death felice the survivors traumatized. casey people with very high rates of the anxiety llord

posttraumatic stress in this sibling conflict and labor not talking to each other so now i am on a mission to improve the way that we die. there will always be suffering but i don't think we should be tear rise to think if we don't provide the perfect as we have failed somehow but never like to use the us eliminate the unnecessary suffering as a result of in essence in the 1960's we invented a panoply of life-saving devices. pacemakers, and dialysis, respirators, like a burst of creative and

pensions. these were mostly intended to get someone over a brief temporary health crisis called the bridge technology but they became a bridge to nowhere because now they're used on people at the end of their life so people are sacrificing the possibility to have meaningful conversations prior to their death because they fight and toe the last minute the person who is dying is a prepared this is a total reversal of religious traditions up and tell me 200 the virtuous person of faith excepted the coming of death as god's will and prayed for patients in the face -- and faith and all

would help all and it would take place at home and family members, there were books called the art of dying and continued as a religious tradition to the 1800's. family members were given a script of the questions to ask andrea sure the person on the deathbed. we stopped worshiping at the altar of our religion and transferred that worship to science and technology and medicine and we lost a lot of those transitions and now we need to bring them back. this book is not a polemic there is a lot of investigative reporting that i like to think of it fundamentally as a love

story because i fell in love with the parents all over again in their last seven years as i was there long distance caregiver so i will show you some pictures of them. this is my father and mother shortly after they met on the campus of the college of south africa and they're both south africans you can see there fun-loving quality and their assessed the and the tax. my mother just ran a foot race barefoot this is a south african habit and it started to rain so she is folded into my father's army overcoat. you cannot see it in the pitcher pylos disarm in he nearly died and would have if not for penicillin which was just coming on line.

they were lovers of life into not opposed to madison. it saved both of their lives in my mother had breast cancer and survived yet they believe less is more in life stops becoming a blessing and is a burden or a curse and they did not want that to happen to them. this is me and my parents about two years after my father's stroke one year after the pacemaker went to in a and you can see my mother's exhaustion in a you can see my father's perpetual confusion. from that time on he very rarely smiled i remember him saying over and over what's happening now? party is saying?

-- what you saying? it is tragic to think his worst chapter was prolonged a couple of years by having a device in his heart that prevented him from having the most merciful death to have his heart stopped in his sleep. id you can see my total optimism that i will save the day and i had no idea what was coming down the pike for all of us. i will talk a little about a mother's death then read from the book then hopefully we can have a discussion because i feel this book is an excuse for public conversation that needs to take place.

this is my mom around the age of 60 and she remained a very beautiful woman all through her life into her old age. after my father finally did die of pneumonia in a hospice she needed open-heart surgery to fix a leaky heart valve and she thought about it very seriously we were encouraging her to do it a and she refused because it had dangers of dementia and stroke and she was not willing to run the risk at 84. she had a right to choose the nature of her death as far as i am concerned she died five was later and before that she had the opportunity to make peace with one of my brothers, apologize to be for something very minor that they made her a little

book for her birthday she said i found that little book is so beautiful and lovely. i just did not appreciated at the time. because she had the gift to know their deaths coming she could do the final tasks that i think of as i love you, please forgive me. i forgive you. thank you. goodbye. nobody deprived her or gave her false hope nobody told her everything would be flying and she would get through it. she had an opportunity not to die easy death but meaningful and i really want to get across it is not a gram attacked there is a lot of love and redemption.

so now i will read. >> on an autumn day in 2007 while visiting from california my mother made a request i dreaded and along to to fulfill she poured me a cup of tea beyond the kitchen window to card bills splash in the birdbath. her white hair gathered at her neck in her voice was low. she put a hand on my arm. please help me get your father's pacemaker turned off.

i knit her eyes and my heart knocked. directly above us that was there shared a bedroom my 85 year-old father, a retired wesley and professor, a stroke shattered and going blind suffering from dementia lay sleeping. he had a pacemaker that helped as far outlive the brain. as small and shiny as a pocket watch it had katchis heart beating for five years them blocked one pass to a natural death. i don't like describing what they we're doing to my father and mother without telling you that my parents loved each other and i loved them into another could stay in a deck hand so a silk

blouse from a federal and make to their with their own chicken stock and my father was her best friend in he never gave up easily and anything. but born in south africa he was a 21 year-old soldier in the army when he lost his left to a german shell. he married women other earn a ph.d. from oxford, a coach rugby, live would billfold for on dash floor to ceiling bookcases and sail his boat on long island sound. when i was a teenager in allied's he would wake me singing in a high falsetto

awake before the cup run strike. at night he would stay in the bedroom door way in say good night to my brothers nbc quoting farewell paid the flights of angels singing to your best. four decades later in the house where he chortled and sometimes the undercover have to coach him to take off his slippers before he put on his shoes. another put down her teacup. she was 83 and as lucid and bright and more elegant in her black jeans and sweaters and i could ever hope to be. her hand was hard on my arm. he is killing the improving

my life. she was taking care of my father 100 hours per week. i looked at her who thought -- and thought of the writer who died of tuberculosis at age 44. whenever there is someone in the family that has long been ill he wrote there are painful moments when all secretly at the bottom of their hearts they long for the death. one century after word my mother and i had come too long for the machine to fail this is a moral choice that neither my childhood nor my buddhism had prepared me. i shook when i imagine watching someone disable the

pacemaker and ship more what i imagined trying to explain it to him. at the same time i figured if i did nothing his doctors would continue to prolong what was left of his life and tell my mother went down with him. i've loved my father even as he was miserable and damaged in the years the incommunicado. of loved my mother and appointed her to have a chance of a happy widowhood i felt like my father's executioner and i had no choice. i mitt her eyes and said yes. so that is what i will read or that is what i have read. i you very interested in a conversation about questions about the book or a dilemma that you face or have faced.

i don't think these are easy questions different people will draw a line in a different place so i don't want anything that i have said or read to give you the sense this was easy these are probably the hardest moral choices but what is the loving thing to do? not what will make me feel comfortable but what is binaural responsibility as someone who loves them so deeply? what is my moral responsibility where the technology will keep going if we don't figure out how to practice discernment so

they are in trouble as a culture. think you very much. [applause] >> i am rachel. the article in the "new york times" changed a lot of things that could have happened to the end of another's life is there is a lot of decisions to make it and none of those are easy for those of us what she. somebody that is too young to die. i have the hindsight knowing how much worse it could have been i made every ready reid the article id we did have an adult paying full grown up conversations.

in hindsight the one thing i would have done differently is used outside help more. my parents worked hard and saved hard and did the right stuff because i know that is not common, i would have done that more because what i did not do was allow myself time to be my mom's daughter. because she introduced me to anybody this was my baby and not only did i lose that% but who was in relation to that person to not be introduced as my baby i would have given myself more opportunities so in hindsight what led you have done differently?

>> along the same lines. i would have asked for more help across the board include the more pressure on my brothers that were a little bit absent. of would have said this is your moral responsibility. it is that about giving to but they need us definitely. i wish to have understood more about hospice earlier in the game. lot of people our afraid of hospice because they think it is a death sentence in fact, people often now live those in get maximum treatment. this new specialty is like old-fashioned doctoring to get the help of the entire team there is more time spent talking about symptoms

, and make your daily life better and i was just on the panel one week ago with a guy as stanford he was given the internal defibrillator that shocks your heart and he asked to have it turned off. but he was transferred to use the program at a hospice they said what is wrong? why is your life not worth living? he said i want to go to my workshop to make the choice i cannot do that they gave him oxygen indigested his medication now he has a high quality of life is healthier now. there is some great irony is that sometimes when you stop trying so hard to extend the

life you kid drastically improve the quality. to not know there was palliative care that is the sixth with benefit not just for the last three days of life. >> you mentioned a false hope that i guess that the medical industry may give with devices so do you think the better death the you mentioned involves a certain amount of losing hope? if so, how would you about discussing that with the person who may not have given up hope yet? >> it is hard to a dancer like a buck -- bumper sticker. we need to adjust our

expectations of the last chapter of life period you could have the healing without extending longevity any further. so there is a difficult shift in cold in introspection about the values that need to take place. i had a conversation with my mother she refused to open neurosurgery then had a heart attack and after the heart attack the cardiologists in wanted to do the same surgery she rejected plus also a heart bypass i said i think we are grasping at straws in she was quiet in she said it is hard to give up hope. then the phone call ended then she called me back four hours later in said i want you to give my sewing machine to a woman who

release those it has no plastic parts in this all metal. [laughter] that was a hired conversation but it was true. i think we seller solves short people face the death for millennia. that fit for our family to be that blunt but not necessarily the same for your family budget could be a different conversation but at least to have an understanding we are approaching the end of a reliance it could be several months but to have the phrase in your room because we deprive people of such possible blessings if they die a completely unprepared

they cannot say their last words or cleanup what needs to be. someone said recently an a different context here is 10 miles wide in a freer is 10 miles wide bid only paper-thin but if you walk through that you could have an easy conversations and people i know have sent the book to film the vendors to allow it to be in the opener for a conversation needs to happen sometimes the kids cannot let go. >> i have to situations one is very close like your father. my mother was given a pacemaker although she was healthy in and active but had atrial fibrillation but in the end she had a stroke

anyway into lived two years in a nursing home and could not get out of bet. it was very hard for all of us to watch her to be in that condition. some of those questioned if the pacemaker delayed the debt that could have been more natural. the second situation in mother-in-law had kids aryan was treated over one year in the doctor told her if she did not have a treatment she would die within two weeks but she lived long enough to see one of her granddaughter's be buried -- married then to linklater she went with kidney failure and the doctor said i have a

hard time if they are not ready to give up when it was time it was time for her but he said if this doesn't work we will try to flush the kidneys then we will do dialysis id we said what? she has been through enough it was throughout her body and i had to say why? what are you trying to do? a few days later the flushing did work they gave her more qui mal but she died the next day. it taught me a great lesson to think about my own time coming and we're now having

conversations with our three daughters. i am now just learning about palliative care that is so much more humane. do you think as a society that one of the things as my mother-in-law the doctor told them what to do cheese steak as we hear ag we are moving away from that were becoming more aware we have the options? the amir growing in that way? >> i do think fielder generation is more desperate to authority but i have watched friends have as much

terror excuse me have this much terror of death with the inability to face it. melanoma also was gone to the body but given all that bad dues dead within two hours he was told this is suppliant of coal breaking radiation and not even a pious to say what is it like to digest the news and and what do you want? i feel both ways i do think there is questioning but the terror of death is fundamental and it is not easy for any generation. also there are very well-intentioned doctors

better in a hospice or family medicine or palliative care better quietly horrified of what is going on i get eight meals almost every day i am paid more for putting someone in intensive care than having a conversation about a less invasive approach. what can i do? and i am just a writer. [laughter] i have no idea. don't sell them short because they are well intentioned but most have no training was difficult or end of life for an advance still this conversations so it is not surprising they would revert to the reflexive most of it -- mode of treat rather than talk. >> besides your book what is the book you recommend that everybody reid?

>> i have to. my mother your mother. it would if a book written by a super geriatrician new york other of medical care giving in the last phase of life another one is a thin panel plant called a hard choices for loving people by a hospice chaplain and it goes to the moral implications and practicalities to say yes or no to these treatments like antibiotics were feeding tubes those are the two that i recommend. >> there is a statistic down there about health care cost for the last six months what

would you say about the affordable care act? >> one-quarter of medicare spending is for the last year of life. one-third of those are in intensive care 10 1/3 is a hail mary surgery so it is incredibly expensive. unfortunately the affordable care act does not address this very much. it is to ensure every petty but not a lot to build the and -- built in and to see how it is spent devil like to see that money spent in different ways of congress pay -- longer stays in

hospice not to eliminate the costs but spent differently so is awash they do try to put the $200 payment for doctors to have serious and of life conversations and that was miss characterized as a test panel they tried to kill that. it is being tried to be reintroduced now but i don't know. >> i am younger than my brothers one is a doctor one is a lawyer so i was told my dad had a 50 percent chance to make it with the cancer agent they were told there was no chance it left me in a funny position so somebody decided to cut things off but it is important to let everybody know what is going on in. >> absolutely.

i am a journalist to have 30 years' experience but you have to ask a lot of heart in the detailed questions one is a fight get the test will the change away treated? it makes no sense to get a mammogram if you don't treat with chemo any way. a friend's sister had ovarian cancer so she went into the discussion there was one round in the cancer returned and the doctor said a lot of people get a good response from another round in my friend asked what is a lot of people? it turned out to be 17% and what is a good response? an extra three or four weeks of life so you have to

unpack somebody stood up at the very time when you want to collapse into the hands of a loving community were put in a position you have to be assertive and a skeptical about the information it is a horrendous situation and if we embrace a hospice palliative care even a new profession called a decision coach to get social work help to come to terms that could be difficult information that you did not want to hear. >> my mom is a hospice nurse and has been able to guide her father threw his death by turning down over the extensive care and now her mother is at heart failure

it is helping her through that same process. imf healthy and well this writer and a personal trainer and i am curious how much is it personal memoir and also a journalistic and also the key messages that came out. >> think you. it was a very challenging book to write so i will talk is a writer. to things that make it challenging half and half or 60% story 40 percent investigate -- investigative reporting. but that is not the dominant note of the book. as a right to the ever righty challenges because you like to have a turning point of the upward message

or the hope you can just expect them to read so if you trace my father's trajectory you had a great life, a full life, a stroke stroke, then a pacemaker that he got worse and worse and worse then died. that alone is a trajectory nobody will buy to a full book. i also had to have a different thread is i had a lot of redemption and love a and healing as a result to agree to goes through this with them and a mother and i got closer. we got more sophisticated a and skeptical as medicine and then finally my mother completely rebuild.

so then it is a rebellion story like georgy and the dry again so that there was a triumph and healing and empowerment in the story even though obviously those my parents died during the course of the book. it was important to construct hope in surprise and redemption that all happened with us including the only realized as i wrote the book at the points where weaver in the deepest despair a year and totally bummed out of ideas, it is like an angel played show up from the outside. in the first case it was a caregiver cover a five-year sober, severe mental illness that prevented her from working a few hours per week , a managed mental

illness my mother was terrified to hire her about five years queeney and sober but she was a godsend but she was a rock and the wisdom and a kind of is that we desperately needed. that was part of the plot idea of the new within the course of right. >> guest: i've looked back i thought these people just showed up. that is the plot in the other question i talked about the a journalistic journalistic, one chapter of found fascinating is i read about the invention of the pacemaker the first one that went inside someone's body was put together an a cave and then they put in the components and fill it with

the proxy a hint put in the abdomen and he was in his 40's and it literally did save his life until he was in his 80s so i loved researching that chapter to write about surprise and said how transformed into a form to our experience of death with these inventions ever so well-intentioned but ms. used later on. . .