tv Inside Story Al Jazeera January 3, 2014 11:30am-12:01pm EST
america. inside story is next, and check us out at aljazeera.com. decision-making, while in texas it's a 33-year-old woman in her second trimester of pregnancy. when is life over? who gets to say, and who has to pay? that's the "inside story." hello, i'm ray suarez. dying in america can be complicated, expensive and accompanied by questions that are hard to answer. if a person is unconscious and unlikely to ever be conscious
again but their heart is beating, their fate can hinge on family members, the state where they live, hospital rules, legal documents and the struggle to understand their wishes in the absence of key documents. as a nation the united states already spends a lot of money on people whose lives are almost over. one out of every $4 spent by medicare, more than $125 billion is spent on the tiny minority of patients in their last year of life and costs don't just fall on the public system. many families are shocked by the out of pocket costs that accompany keeping a dying loved one alive. two cases, two very different situations bring end of life decision-making into focus this week. on december 9 she had a con sill electricity and adenoid removal.
she began to bleed heavily from the nose and mouth and went into cardiac arrest. her family is fighting the hospital saying she is alive. >> i hate it that they refer to her as just a body, because that is my child that they're talking about. they don't even use her name. >> jahi m mcmath remains on a ventilator and they hope for recovery. a judge has ruled children's hospital of oakland must keep her breathing until january 7th. >> the hospital filed a series of motions against the mcmath family attorney motions because we want the court and public to know that this young lady is sadly deceased and nothing is going to bring her back. >> the mcmath family wants their daughter moved to a new facility and has gone to court to keep her on the ventilator until that
facility can be found. now the terry schiavo life and hope network is working with the mcmath family to find a way to keep her on life support. from 2003 to 2005, the teri schiavo case captured the nation's attention. she had been in a vegetative state for 15 years after a prolonged legal battle, schiavo's husband won the right to remove her feeding tube. another case puts the wishes of a family at odds with state law. paramedics were expecting their second child when marlese suffered a pulmonary embolism that left her brain dead. because his wife is pregnant, texas law she must be supported until the baby can be delivered. the fetus is now 18 18 weeks old
and could be delivered by c-section at 24 to 28 weeks. the jumi mcmath and this case raise questions about the right-to-die and how we deal with the end of life in an aging america. these cases are rereigniting our conversations over end of life decisions. when does life end? who has the authority to withdraw life support and who has to pay for it? joining us now to discuss these questions is arthur cap lynn, the director of medical ethics at new york university. from san diego wendy patrick an ordained minister who is a deputy district attorney. from sacramento michael weinberg, senior policy adviser for the bay area council. a trade group with
kaiser permanente. has our technology moved so far ahead we could keep bodies alife and also detect whether brains are working in a way that blurs the line between the state of being alive and the state of being dead? >> well, you know, ray, the issue is certainly fueled by technology, but we've had issues throughout our history of humanity in deciding when someone is truly dead. it was always a terrible fear even when someone's heart stopped that they might be buried prematurely. edgar alan poe made a career out of it. people wanted coffins with exploding lids because they knew errors were made. today's technology certainly exacerbates the problem, but at the end of the day i don't think we had that problem in either of the cases we're discussing. we know what the medical facts are pretty clearly death has come. how we want to cope with that reality, that's a different matter. >> wendy patrick, is it as cut
and dried as that? you heard the attorney for the hospital saying, we want the court to understand she is deceased and nothing can bring her back. >> well, of course, thou shall not kill, right? that's one of the issues at the center of this debate. is she, in fact, already dead or not? there is, in fact, some disagreement even in the medical community as to the end of death. what is brain death really? does it really signify the end, and how do you we explain the series of medical miracles that have happened over the years, some of which have involved people waking up after having been declared brain-dead. in fact, several cases within the last decade that are reigniting this controversy of is she really brain dead or a possibility of revival? >> does that mean that all the tools and the metrics that we use to detect whether someone is, in fact, alive are not useful in cases like these? >> you know, i think it's all of the above, because just in the
last couple of years there's been some brain-dead patients that have had second opinions and third opinions. we're a society of multiple opinions. the time period in this case really sort of bears on this issue as well. she hasn't been in a coma or brain dead for 20 years. it's been two weeks. that is another thing that has some people questioning, should we wait a little longer before we absolutely want to decide there's no hope of resuscitation in any event? >> michael weinberg. in this heart-breaking case, she's 13 years old and we're not as often faced with that kind of situation. but we are a country that's about to have a demographic wave break over our heads, and there will be tens of millions of new people in the last stages of their life. is this something we've got to come to some common wisdom about? we can't keep everybody alive. >> absolutely. i think that this tragic situation really represents
something of a teaching moment. her situation and the other situation we're talking about today are unusual, but we all die. only 7% of us want every measure used to prolong our lives, yet, when we get to the end of life, it generally doesn't come out that way. so hopefully we can use this as an opportunity to really address these very important medical issues. >> mike, do too many people leave it to chance what happens to them? are there not enough americans with end of life directives, durable powers of attorney and so on? >> yes, absolutely. advanced directives are essential for people to have. unfortunately, they're not always followed, and it is important to have them on file. for family members to really understand that and to stick to that so that people can have the death that they want. >> well, art kaplan, earlier in the conversation you sounded pretty certain that both the
people that we're talking about are deceased. wendy patrick didn't sound nearly as certain. how do we define "death"? is there a good thumbnail description of what is death? >> well, i think death occurs when the ability to maintain vital functions, heartbeat, respiration, temperature regulation, digestion can't be controlled by the brain. so if your heart and lungs stop, you're dead. if your brain has lost all electrical activity, you're also dead. the reason i'm so certain that both of these people sadly are dead is that there's not vagueness about how they came to be in the conditions that they're in. sometimes if somebody drowns or we have an unknown period of time without oxygen, you can get into disputes about whether brain death has occurred. little n
lack of oxygen. the woman in tekz pregnant was without oxygen for more than 30 minutes. there's no mistaking brain death in those cases. in both of them, independent experts, i think in the mcmath case, five different tests have shown no brain activity. so there is sometimes room for argument and dispute, but not in these cases. i think that we hahat we have here is a little bit of a lack of trust and anger showing at the family saying, my daughter went in the hospital, and look what happened. in the other case the state of texas saying fetal rights trump what the husband and that mom may want. >> we're going to take a short break. when we return we'll talk about the march lease monday noz case and how texas has intervenes for the delivery of a young baby now a fetus at 18 weeks of gestation. this is "inside story."
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to handle in actual practice when you're dealing with human beings faced with terrible tragedy? >> you know, that's a great way to put it. the issues we're talking about today, they really transcend legality, don't they? we're talking about a mix of ethics, morality, theology, and, of course, all the legal rules. we're also dealing with an enormous amount of emotion. you have the hospital saying, you know, this is a corpse. you have the family saying, you know, she's warm. she's responding. the heart's beating. there's every sign of life is there, and so we have this battle between emotion and logic. we've also got this battle between where -- how are we going to decide whether or not somebody is dead. with medicine progressing at the rate that it is, who is to say that in a year from now we won't have figured out a way to restart the brain like we restart the heart. we've made so many incredible advances in the last decade alone that you can see that that's what fuels some of this
hope that, you know, let's wait a little longer and make absolutely sure there isn't anything we can do. >> in the case of marlese munoz, we have a state deciding that munoz's fetus has almost citizen rights. there's a state interest in protecting those rights. that in some ways overrides the wishes of ms. munoz's own family. is that unique to texas? do we see that across many states? >> we have seen in a lot of difrn states putting the interest of the fetus ahead of the interest of the parents, especially in situations where it might be dangerous. as a prosecutor i see this frequently. when you have somebody taking drugs or addicted or doing something putting the feeths at risk, some of the states have appointed lawyers for the unborn in order to make sure they're protected in being born healthy. so this interest in the fetus is really a sign of times, and
we're seeing it not just in cases like this which, of course, is tragic but in a locality of different kinds of cases as well. >> michael weinberg, big medical institutions have to wrestle with this kind of thing all the time. are we getting to a place where there's a national consensus on any of these, or are we looking at a country that's what like a patchwork quilt when it comes to this, even when there's a universal desire to lower health care costs, to spend less money on the end of life and that kind of thing? >> yeah. there is enormous variety among hospitals in terms of how they treat folks during the end of life. even within a state like california where the laws are the same and the cultural prevailing attitudes might be the same. a lot of that has to do with how the hospitals make their money, and it's important that with all these ethical, legal, moral questions swirling around that the hospitals have the right financial
incentives to make sure they're providing the exact right amount of care rather than excessive, intensive interventions. >> what do they want? predictabili predictability? something closer to a one size fits all rules so they know how to proceed where there's conflict? will that help? >> no, i don't think you can put in a one size fits all rule. i think that you can and we need to have a cultural conversation about this. for example, about 1 in 10 patients in icu beds in the united states are receiving what the physicians in their own judgment, not according to some sort of rule, consider to be futile care. this is costing folks about $4,000 a day, although it varies wildly, and we have to remember that there are finite resources and we have to decide as society how to spend them. it isn't just an issue of what's
going to happen to some young woman that we can wait weeks or months or years. the question is what do we do with the rest of those resources? >> dr. kaplin, is it made more possible to say do everything to help my father, brother, cousin, aunt? because in most cases we don't pay for it personally. >> absolutely, yes. if you had bigger co-pays when doctors said treatment was few file, if you had come out of your own pocket, the costs of those icu care beds, you'd find more reluctance to spend the college tuition on 89-year-old grandpa that has had four heart attacks and the basically the doctors are saying just can't live very much longer. that said, it's also the case that we are a society that has very am
bif lent attitudes by it. we want to trust them and hope there's a breakthrough you can do everything. the best play to be resuscitated if you die from cardiac arrest is on television. we did a study here. about 90% of people did better. in reality, in a hospital when a heart stops, 6%. >> how do we find that sweet spot, wendy patrick, between doing as some people say everything possible, and yet when you ask them about their own wishes, they say, oh, no heroic measures? we seem to be as dr. kaplin suggests more than a little am bif lent about the questions. >> these cases today increased the ambivalence. the reason is we've had a lot of dialogue, which is always a good thing, but it's really kind of surrounded this issue of how do we know when to give up hope? when we plan our own advanced directives, how do we know what's available or possible by
the time we reach the end of our lives? some people are probably after watching all the news footage of very tragic cases really rethinking what they want their own advanced directives to look like. do they want to revise them every year? do they want to have a point -- appoint somebody to keep track of the latest developments that might add to the kind of hope we have when we reach the end of our own lives. so it's a fascinating topic and one that actually we should be thinking about a lot more than we do. what do we want to happen to us at the enof our own lives. >> we need to take a break, and we'll continue our conversation in a moment. i want to talk a little bit more about what role money could and should play in the conversation. this is "inside story." stay with us. >> an exclusive "america tonight" investigative series >> we traveled here to japan to find out what's really happening at fukushima daiich >> three years after the nucular disaster, the hidden truth about
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welcome back to "inside story." i'm ray suarez. we're discussing the end of life. the ethical, moral, religious decisions we face and the costs those decisions have for us all. still with us is arthur kaplan at nyu and from san diego wendy patrick an ordained minister and a deputy district attorney. from sacramento michael weinberg, senior policy adviser for the bay area council, a trade group that includes kaiser permanente and blue shield of california. if i was to suggest we make all the decisions based on cost, i would be dismissed as heartless, craven, and an awful person. yet, if i was to suggest we keep everybody ali in the hope somebody will wake up, that would be considered ruin ous and
illogical. what role should money play in the conversations about it and the decisions we make for ourselves and others? >> yeah. not easy questions today. i think one of the first things i want to emphasize is that it isn't always entirely about money. there have been studies of a lot of patients in end of life care showing that a high degree of intervention not only gives them a terrible quality of life but shortens their life. this isn't just a question of rationing where does the money go? there certainly is -- there are finite resources, and so making sure that the doctor's professional opinion is considered, making sure that the family's wishes are considered is important. so when we do have very, very sad but unfortunately relatively straightforward cases like the one in oakland, that certainly needs to be an opportunity for people to talk about the fact
that this is a place where we need to make a more rational decision. >> wendy patrick, what role should money play in these deliberations? >> you know, it reminds me -- i don't want to date myself. it reminds me of the pinto litigation with the exploding gas tanks where we were talking about the cost of a life. that's what we're talking about again when we start, you know, really breaking it down into resources and expenditures. there's just no way we can general generalize. we have a 13-year-old girl, for example, in gentlemjahi's case and the person with four heart attacks. it's impossible to generalize across the board to come up with a figure. i understand that some people think it's heartless to really sort of break it down into financial aspects, but necessarily that's one of the things. that's one of the components that goes into these very tough decisions that we're talking about today. no easy answers.
>> dr. kaplan, as i noted in the beginning, 1 out of every 4 medicare dollars being spent in the last year of a patient's life. in many cases we don't know it's the last year until it is. money obviously plays some role in how we think about these questions. >> it's interesting. money plays a role, but i'll tell you, in end of life care it doesn't drive policy. we certainly have been spending a fortune on battling death right to the wire. we yell about money more when it's lifestyle or prevention or other things, but we're a society, americans particularly like the technology and believe in rescue. i'm going to say what we need to do here is probably concede that medicine and its doctors and its nurses are going to have to practice by the clear, bright line of when death comes we stop. that's going to be one area for which it doesn't matter what it costs. what matters is medicine agenci's job
is done. that's getting lost battle in these cases. the doctors have said death has come. no more to do regard willings of cost. i think we have two confirmed deaths and we ought to think hard about how we're treating what we're doing as a response to that. >> so the youth, dr. kaplan, the jahi mcmath doesn't militate in favor of trying a little longer? >> i wish it did. given her cause and event and what was observed and what we know about why she has no brain activity, i don't think her youth is going to matter one bit. >> you know, we've heard some word about the conflict between the family and hospital. wendy patrick, i wonder whether enough is done on the front end to make everybody aware of the risks, the possibilities. is there an open enough channel of communications? this will be our last comment for today, between sick patients, hospitals and families? >> that is an excellent question because remember what young jahi went to the hospital for.
she didn't go in to have a heart operation. she went in for a tonsillectomy, a relatively simple procedure in most cases. the communication up front, and the liability issues are wide open here. i'm sure there are things in place, and it will remain to be seen what happens as a result of this. you bring up such a great point. you can imagine parents and family members across the nation are now going to be just grilling their health care providers to make sure that they know every possible outcome of every possible operation because this is just one of those freak accident kind of cases where something happened. we still don't know what that led to this result, but i think you're absolutely right that that conversation on the front end is going to be ten times as long. >> wendy and michael and dr. kaplan, thanks for joining us, and have a great new year. this is the end of this edition of "inside story." thanks for being with us.
welcome to al jazeera america, i'm del walters. these are the stories we're following for you. a major winter storm slamming the united states. secretary of state john kerry trying to advance the middle east peace talks. plus the latest hurdle for the affordable care act. it is now official the first winter storm of 2014 moving away from new york city but not after dumping several inches of snow in the big apple. the