>> amy butler has written her first book, "knocking on heaven's door" the path to a better way of death. katy butler who is jeffrey butler? >> jeffrey butler was my father and your holding up a picture of him and me in a very loving position. he was a world war ii veteran. he lost his arm in the war. he had amazing debts. he builds a floor to ceiling bookcases for a living room with only one arm which was just amazing. he was a professor of history. >> where did he teach? >> he taught at wesleyan in connecticut and lived a very long, full, happy and vigorous

life. >> what were the last couple years of his life like? >> when he was 79 he had a devastating stroke but he did not die until he was 85. at a time when his death would have been a mercy and blessing because he was given a pacemaker a year after this devastating stroke and the result was frankly that his heart kept going while he descended into dementia and near blindness in missouri. and actually said to my mother i am living -- so those last five years of his life were frankly terrible. >> when the pacemaker was put in at age 80, what was the families thought about that? >> i think was the combination of ignorance and denial. there was no real conversation with a doctor about whether or not to do it or what the long-term implications of doing this would be or the moral implications or what my fathers

choices were. essentially the a doctor just said he has a slow heart be so we are putting in a pacemaker. the result was that my mother, i talked to her about it quite a bit later and she said, i was still in denial. i select hope that somehow he could recover from the stroke and i was the daughter on the far coast and quite ignorant about medicine then. i really figured it was their decision. it was up to them. if i had to do over again though i think i would have been a lot more proactive at that early stage. i would have done a lot more research. i would have understood that are what we were up against. >> if you had chosen to take out the pacemaker after two years, could you do that? >> well that's an interesting question. first of all it would not have been taken out. it could be disabled with just a little remote radio device that would deactivate it so it was actually a painless procedure.

the cardiologist associations have now put out a statement saying that it is not euthanasia, it is not assisted suicide. it's perfect the moral and legal to have a pacemaker disabled. unfortunately that statement came very late in the process for us. i think it's an area where medicine is still kind of groping for answers and doesn't really know how to even discuss these questions. maybe we as a culture, we don't really know how to do it yet, you know? >> katy butler, what did your parents, both your mom injured dad died, what did the end of their life care cost? >> is a very interesting question. neither of them had highly expensive deaths. if you look at my father's last five or six years of life you get to probably about $80,000 work of pacemaker and that kind

of stuff. my mother on the other hand, very close to the end of her life refused open-heart surgery and then she had a heart attack and the doctors again said let's do open-heart surgery. >> how old was she? >> she was 84 that point and if we had done the surgeries they recommend it would have cost medicare 80 to $150,000 but she declined all that so her death i would say was probably a 10 or 20,000-dollar death because she was in a hospice. she declined most extraordinary intervention so we got a lot of social work, lot of healing and a lot of reinsurance from the team but we didn't get high-tech expensive feudal painful interventions that so many people suffered. >> are there people who choose all methods possible to sustain life? >> yes. >> why? >> i think they're a couple of reasons. one is we just have to allow everyone their choice and their

range of autonomy as they approach their own death and i think the other reason is we have a tear in an ignorance of death now. up until 1900 people died randomly throughout their lifespan and they actually read books with titles like the art of dying. they actually considered a part of the spiritual obligation to put. themselves for their own death. so they were very good on thick substance, or avery and courage that it takes to die, to face her death at all and we really lost all that in the 1950s and 60's when we became so adept at life saving and life prolonging. >> has death become an industry? >> wow, what a question. medicine has become an industry and high-tech fixes however expenses they are can be very appropriate especially in the early stages of life. we really can't say people who would have died 100 years ago

but towards the end of life is actually unfortunately profitable for a hospital or device manufacturer to put a device in someone for whom it's totally inappropriate but to prolong a death in an icu in a way that is totally inappropriate for that particular person. >> as medical techniques advanced and advance and advance, at what point does a heart, lungs, at what point does that constitute life? >> well i think that is a really good question and again before the 1950s you couldn't preserve one oregon. you couldn't make a hard keep going without the rest of the body functioning and now we can keep in a single organ functioning or several of them at once with a person the person has no brain and perhaps no sense of self. or has the sole has already fled the body and get we are so

fixated on the idea that pink skin and a heart beating is in fact life and i think unfortunately we don't have language to discuss this. we have put simple maximum longevity on an altar instead of worshiping truelove, juror relationship's. the importance of bravery and spiritual acceptance towards the end of life so people can add meaningful deaths that don't leave their families traumatized. >> in "knocking on heaven's door" you write doctors are often consulted by suggestion by such financial strictures help shape their medical treatment but just as surely as the home mortgage promote homeownership economic incentives and disincentives along with the comfort of dying fear of being sued are accused of conducting a death panel and feelings of professional failure and courage specialist to refer patients to hospice care only days before death.

>> it's said to that true. half of the people who enter hospice are there for only the last 14 days of their life or less. for example, an oncologist who suggests yet another round of futile chemotherapy will get 6% of the price tag of that came out even if it's a 10 or 20,000-dollar chemo but if he has a two hour conversation with the family that is meaningful and deep and says i think we are at the end of the line for what chemo can do for you and i want to refer you to hospice, he will get virtually nothing for that to our conversation. why are we creating pathways that actually reward doctors for doing the wrong thing in situations where they sometimes even know what the right thing is, which is it's not a knock on doc yours. it's why do we put them in such an impossible position? >> katy butler when you talk to

doctors about this book would have their reactions? >> there a whole range of reactions from your mother was right and you did the right thing to say either i don't understand how medicine works is one my nike ad or the other one is, you don't understand how afraid we are that her family is going to sue us for wrongful death and that we don't know our patients. people come into the emergency room. we have never seen them before. we don't know if it's this katy butler family with the dnr in a and a clear living will or someone who's going to save my father is 95 but i've never discuss the end of his life with him and i wanted to keep them alive no matter what. so i think i came to understand as i wrote the book what a difficult position they are in. there is actually a phrase in hospitals called the nephew from peoria. this is the relative who flies in long distance who has not been involved in in the family karen allen says that everything

be done, everything be done to provide -- prolong the life even if the family member who was dying has a living will and clearly has said they don't want extraordinary measures. i think i have a lot more compassion for the difficult position we have put them in, yeah. >> changes in medicare's reimbursement structure could help. perhaps someday medicare will offers the choice of a plan q covering up to two years at home palliative care in exchange for the willingness not to expect medicare to pay for last ditch 35,000-dollar defibrillator etc. etc.. >> yeah. i really think frankly we need a grassroots movement of caregivers to transform how we approach the end of life and how we reimburse doctors so they can do the right thing rather than the wrong thing. >> is there such a movement afoot? >> there is actually.

there's something called the family caregiver alliance .-period-paragraph that are groping towards this territory but they are up against some of the most powerful lobbies in washington, literally. the most powerful lobbies in washington are medicine, finance and the military. those are very sophisticated forces. they understand the ins and outs of medicare and frankly we are we are a long way yet from the average caregiver understanding the ins and outs of what they are dealing with. >> katy butler's book "knocking on heaven's door" is coming out in the fall. where did this book spring from? >> had sprung from a new york time magazine article. after that it sprang from a "new york times" magazine article called, what was it? what broke my father's heart, how a pacemaker wrecked our families like. this article, published on father's day and i was afraid

that the readers would think that my mother and i had been heartless and cruel towards my father and we have just the opposite reaction. we had an explosion of e-mails and people telling us about their own family stories and a large number of doctors and nurses talking about how troubled they are by the trip to the profession into not being able to face the end of life. >> you where did the name of the book come from? >> well it's a bob dylan song that i've played over and over while i was writing this book. knocking on heavens door is a short, extraordinary piece of music that really gives you the feeling that you are in the presence of a dying person and its transcendent and beautiful and i don't know, somehow archetypal. and so i wanted to have that sense of this is not really a book about heaven. this is not a book to reassure you about the afterlife but it's a book about standing on the

doorstep in that threshold state, that state where it death is about to open its doors to you and your choice is how do you want to meet the opening of the door? >> there is a spirituality and this book. >> yes, yes. i am a buddhist but i had a strong christian anglican background. iasc due to having my father get last rites on his deathbed. i feel one of the major reasons why we are so terrified of death is that we no longer are in touch with the rituals of the end-of-life better old religions did so beautifully for us. one of the people i interviewed in the book said the purpose of religion is to guide to living through the experience of death and i think we need to somehow re-create some of those rituals because giving my father's last rites was immediately relieving

of my anxiety and suffering. it really helped me know that i have sort of lost my father and that wherever he was going, whatever form it would take, i felt that i had done the right thing and i was being reassured by an ancient tradition that was there to do exactly what that volunteer chaplain was doing for me. >> were you able to aggregate how much the u.s. spends in taxpayer dollars on end-of-life care? >> yes. >> was that easy to find? >> it was not easy to find the right statistics. there are a lot of wrong statistics floating out there but the reality is a quarter of what medicare spends is spent on the last year of life. so when you consider that people may be on medicare for 20 or 30 years, that's an extraordinary imbalance and it shows something majorly wrong with their

decision-making at the end-of-life. >> this is the preview. katy butler's new book "knocking on heaven's door" the path to a better way of death. you are watching booktv on c-span. .. i'm glad i wrote