END OF LIFE CHOICES
(CART Transcripts)

Saturday Afternoon Session: 3:45pm-5:00pm:

I want if get to induction of my panelists so we can get started Starting from my right I want to introduce Karen WONG. I'm reading this cold so please know when I say it is -- almost Dr. Wong has an MED in counseling psychology has defended her doctoral dissertation and is presently completing clinical internship. She has to publications addressing end of life choice, one of which is included in the materials

>>>: Those are being handed out and still being handed out. She has published many articles... Journal of disability policy studies.

To my immediate right is fully doctor Paul speers Ph.D. He is a neuropsychology who teaches about neuropsychology and the law at the BU school of medicine. He conducts research at MIT and private practice as a consultant as well as expert testimony in probate, civil and criminal judicial matters. Paul is chairman of the board of end of life choices. I will say it again, Paul is chairman of the board end of life choice, the nation's oldest and largest right to die organization that was formerly known as the Hemlock society.

Under Paul and former chairman choices adopted a new name, expanded staffing and is now focusing on legislative advocacy at the state and national level.

To my left is Marilyn gloald man, disability rights education and defense funds. And to my farthest left is Sara -- I now name her revolution girl,, theRIANO, who we just heard her speak really wonderfully on the emerging leaders panel. She is sitting in for Diane Coleman who could not be with us this afternoon.

I would like to begin, then, with Karen, if you do not mind leading us off please. Because we are all getting a late start, I just wanted to -- if we could contain the initial commentaries to 12 minutes, I don't mean 12 minutes in total, I will give signs letting you know what is going on.

>>>: Can you hear me. Good afternoon. Thank you for inviting me. My name is Karen Wong and I'm speaking as a psychology grad student, a researcher, writer and disabled woman.

As you already know I'm not affiliated with any of the groups here, but as a disabled woman I do feel the topic under discussion has impact on my life and who owns it ultimately in the end.

Some people don't believe that the choices is ours. They argue that discrimination has rendered people with disability as vulnerable population who can be pressured to choose death even when not mentally competent to do so.

The so-called vulnerability argument publicly advanced by groups state that the fear and devaluation of disability and disabled people is so persuasive in our cultural climate that we are easily manipulated and warned down by these stereotypes to the point where death may seem like a rational choice when in fact it is not.

The implicit method of the vulnerability argument is that seems to be that we do not have the trite decide for ourselves but we cannot be trusted to decide what is in our own best interest.

Since becoming disabled, I finished my college degree, put myself through grad school, maintained a professional career and romantic relationship. I think this hardly fits the profile of somebody vulnerable to this kind of stereotyping.

The research I conducted among Internet disability groups also suggests there is a generation of us who do not feel vulnerable to social discrimination. Rather, we like to think we are savvy enough to recognize and confront this prejudice if and when we encounter it.

We find the vulnerability argument to be patronizing and owe offensive to anyone who may find themselves in terrible medical situations with diminishing quality of life. As active participants in our own health care we are increasingly concerned about not just survivability, but an equality of our remaining years. And we want the right to be supported in the decisions we make, whatever we may be.

The fatal flaw of the vulnerability argument it engages in the paternalistic stereotyping that is in the medical and mainstream establishment, not about the quality of life but about our decision making capabilities.

I'm not denying that many people with disabilities live in conditions of social deprivation and depression. The fact that a person supports avid's right of choice does not make them blind or insense toifer the realities of social discrimination, but the right to self-determination can and should be supported while at the same time working to combat the environmental conditions that may influence some people to choose death when they might not otherwise do so.

The independent living movement should be about maximizing choices, not taking them away.

In short, a life without disability -- with a disability is not inherently without meaning. However, it comes down to each one of to us determine the meaning according to our own standards. Thank you.

MODERATOR: Next we will hear from Marilyn golden.

>>>: I'm glad there is a Mike stand. I drink a lot of water when I speak and sometimes if I have to hold them both I am afraid they will get mixed up and I will electrocute myself but that won't happen today.

As Gretta said I'm with the disability rights education and defense fund, our nation's for most law and policy center on the civil rights of people with disabilities. I'm glad to have the opportunity to discuss, debate these issues wp end of life choices and others. End of life choices being until recently the Hemlock Society. Happy to do it with Sara who will take a few minutes later to address broader issues broader than the assisted suicide issues that the rest of us are discussing, broader issues of medical killing of people with disabilities.

Sara is replacing Diane Coleman in the attempt to stave life of Terry SHIAVO. More on that.

As I said Greta is in opposition in legalizing assisted suicide. In that opposition we join 10 or more prominent disability right organizations.

Organizations that are long standing and multi purposed.

Most of you have received copies of an article that I wrote on this subject and footnote one lists all those organizations, it is called why assisted suicide must not be legalized.

If you look at footnote one you see the organization we join in, adaments, NICKEL, representing all independent living centers. We are glad to see the independent living movement does oppose. AAPD, who is sponsoring this confer regs, the world institute on disability, all quite respected long existing organizations.

While you certainly can find individuals with disabilities who support legalization of assisted suicide and perhaps website or something organized around that one issue, it is note worth think that the organized disability community in its broad multi issue organizations and long-standing organizations overwhelming opposes legalization. And I'm going to do my best to explain why. But first I want to burst a few stereotypes.

You will here today, I think, that choosing assisted suicide at the end of life should be a right just as choosing abortion should be a woman's right. I am strongly pro-choice on political matters and politically I'm left leaning. I would like to show that progressive have good reason to oppose assisted suicide. Ralph Nadar prominent progressive does oppose legalization. But to understand why one has to look deeper than issues of choice and autonomy. Those words choice and autonomy are like a mantra for those who support legalization of assisted suicide. A. Doesn't always support simple choice. During Civil Rights movement restaurant owners wanted to exclude certain people, certain ethnic groups -- excuse me, they wanted the choice to exclude certain people, certain ethnic groups from their places of business.

But we did not want that kind of society. So we have to look deeper than simply choice. The next stereotype I want to challenge is that someone who is terminally ill and suffering has no legal option besides legalizing assisted suicides. That is not true. They have many. If the more well-known options of advanced directive and refusing treatment and withdrawing treatment are not enough, there is something less well-known, but very important. Is adation of the imminently dying. A process legal in every U.S. state today.

That involves sedating the dying individual sufficient to relieve the suffering and then withdrawing any treatment necessary and allowing the dying process to take its natural course.

So there are other options. You will hear today, I think, in the discussion, a lot of anecdotal stories of misery at the end of life, of why assisted suicide should be legal. So I want give you the other side. In the disability community we have so many of what I'm going to call Richard RADKE.

This is a real person. Dr. RADK is a oceanographer in Hawaii who has had miss lar disstroa if I for a long time. He tells his story after he was diagnosed 20 years ago he was very depressed. His illness progressed that he was often classified as terminally ill. Had assisted suicide been legal, he would have made that choice.

Today, living with his disability he is very happy, married, with children, retired from a successful academic career and running a charitable foundation. I'm asking are we willing to sacrifice all the Richard RADKE for the few beneficiaries that even assisted suicide supporters claim there would be. The other important concept to start with is how people should make up their mind on this crucial issue.

It is so tempting to support legalization because we think -- we each think to our receives, "if I or my loved ones are suffering some day, I want that out the be there."

But legalization of assisted suicide is significant public policy. It would be a big public policy change.

We must separate our private wishes for what we each may hope to have available for ourselves some day and rather focus on the significant dangers of legalizing assisted suicide as public policy in this suicide as it operates today.

Assisted suicide would have many unintended consequences.

Well, in an extremely small number of people may benefit, they will tend to be at the upper end at the income scale, white and have good health insurance coverage. And I think statisticked on this issue so far bear this out. >>>: At the same time large numbers of people, particularly among those less prin privileged in society would be at significant risk of substantial harm.

To answer Karen, I don't argue that ul people with disabilities vulnerables but perhaps some will be.

The first and biggest reason is the deadly mix between assisted suicide and profit driven managed health care. Health maintenance organizations, HMO and managed care bureaucrats are already overruling doctor's treatment decisions all the time.

The cost of the legal that medication generally used for assisted suicide is about 35 to 50 dollars. Far cheaper than long term medical conditions the incentive ti to save money by denying treatment is already a danger.

The deadly impact would come down hardest on socially and economically disadvantaged groups who have less access to medical resources and who already find themselves discriminated against by the health care system.

Poor people, people of color, elderly people, people with chronic or progressive conditions or disabilities and anyone who is, in fact, terminally ill will be put at serious risk.

Today does not allow lot of time for citing documentation. But later I can offer that to see if there is anyone here who needs it to see why managed care is dangerous to us.

Now, I want to talk about undiagnosed depression, which under lies most requests for assisted suicide.

Suicides requests from people with terminal illness is usually based on fear and depression.

As Dr. Herbert hen done, a leading expert on suicide stated in 1996 in testimony, a request for assisted suicide is usually made with as much ambivalence as much suicide attempts. If the doctor does not recognize that ambivalence as well as the anxiety and depression that underlie the patient's request for death, the patient may become trapped by that request and die in a state of unrecognized terror.

Most cases of depression among terminally ill people can be successfully treated. But most -- yet, primary care physicians are generally not expert in diagnosing depression.

Most doctors are insufficient judges of psychiatric disorder too much so for the psychiatric referral in the suicide bills we see in various states and also in the law in Oregon doctors are too inexpert for diagnosing that depression for psychiatric referral to be effective.

Now I want to move even further -- about the time now?

>>>: Yeah.

>>>: Okay. Then I will just say next when it is time again I want to talk more about the supposed safeguards, about therefore how it is going very poorly in Oregon. I think we will hear it is going well. But one state where assisted suicide is legal. And I what on the talk about issue in debate, the Netherland where assisted suicide and you than they ja has been practiced for 20 years -- EUTHNASIA.

>>>: I recognize this is a hot topic and I want to move on to Paul speers.

>>>: Thank you. And as was just pointed out, we are going to hear a little bit about the Oregon law because in fact Oregon is the place where physician assisted deliverance exists. Fix assisted deliverance from the perspective of our organization is not a desperate, impulsive, irrational or the suicide that is the product of depression, all of those things must be guarded against. But an act of deliverance from unbearable suffering that a diagnosed, terminally ill, mentally competent patient chooses to control their final day, rather than to be at the mercy of health care providers, HMOs or anyone else in terms of deciding when or how their treatment should be withdrawn or in some way discontinued.

That, in fact -- good law protects against the kind of abuses that I think, to some extent, Marilyn was talking about.

The Oregon law has been on the books for seven years. It provides transparency and accountability to a process that a so many people dread and don't understand.

Oregon has -- they have provided the opportunity for the terminally ill to choose control of their lives at the end. And they have taken away from the medical establishment alone and the family that keel.

That is being, in fact, exercised in many states -- in most other states in the union now under what is known and what is in fact taught in medical school as double effect. It is reasonable to treat someone in a terminal phase or tremendous pain, and if they happen to end their life at the same time that is a double effect unwanted consequence.

Double effect needed to be protected in the law and clearly under the control of the paid, something that is all the more important for disabled patients. So we would like to see more formal safeguards against this.

No one, per se, has statistics from disabled in the 98/02 report from Oregon. But they seem to show that less than 8 percent had ALS and most were cancercations or other unclassified.

Of those other unclassified only 12 percent in that category that went forward may have been patients who were disabled. But we don't know. In that category of other that is listed in the Oregon record, is not increasing it is declining.

So the argument that physician assisted deliverance, which we hear often, would increase the quote/unquote execution of the disabled, does not seem to be borne out by the statistics gathered in Oregon. Though, there is clearly discussion and controversy of whether those statistics are reliable.

However, polling data in three Harris surveys showed that, in fact, 60 to 70 percent of among the disabled participants in those samples supported the right to physician assisted deliverance.

In fact, that is why drew BUTABA and hue Gallagher formed an organization called autonomy to represent the opinion of the disabled separately from the positions that have been taken formerly by the organizations that are recognized to represent our rights. And even those organizations are now at a point where the dialogue needs to be reopened on this topic. And it needs to be reopened from our perspective, not so more people can enjoy taking advantage of this right, but, rather, so there can be safe guards in place to protect people so that if these laws go forward, which they probably will, that there can be adequate safeguards.

I cannot deny the fierce or concerns may be realistic, but some, although probably no one in this room, feared giving women the vote. Some feared giving women the right to reproductive freedom and choice. Many still fear to protect an individual's right to their own sexual orientation. And some fear providing the right of real choice and life's end to all.

I cannot speak to all of those fears. But I can speak to what end of life choices support. And that is providing safe, accurate, and helpful information about medical, palliative and hospice care as well as about self-deliverance but only where allowed by law.

And at the same time advocating for laws for competent terminally ill people so they can do everything they can to prepare themselves for death and avoid an end that no one deserves.

Choices represent mostly elderly organized around the country because we are deeply saddenned about how the medical establishment treats the terminally ill. There is too much pain and suffering and to see someone in needless agony kept in a living grave under -- against their wishes because the medical establishment says it is a a liability or what is best that saddens me and us as an organization.

We believe that competent determine minimally ill adults whether disabled or abled, and I don't know how one makes that discrimination are in the best information make their own decisions.

Currently, as you may know, there are legislative initialtives. Not started by our organization but are on going. Where we in conjunction with other right to die coalition partners are participating. This includes pending legislative in the state of Vermont where over 200 physicians have endorsed the bill similar to that in Oregon. It has received by partisan support and sponsorship.

It is created a significant public dialogue in the state of Vermont where stories appear almost weekly in the major newspapers concerning how this issue is to be addressed and how people are to be protected and safeguarded and the bell may bf heard in the next session of the legislature.

In Hawaii, as many of you may know, a bill similar to Oregon has passed for the first time in the legislature of the state. Both instances where this issue has come close before to passing and certainly in Oregon it was by referendum.

The citizens of Oregon had to tell the legislatures twice, the first time they passed the referendum by a little over 50 percent. The legislature decided they were not sure if the population was right in their vote so they kicked it back again.

The second time they said if you didn't hear us, now it is 63 percent and that begins to see what we see in the popular polling data.

And also in Maine, where there was a referendum also on this question, the vote was separated by 2 percent in the general public, after significant opposition by organized religion and various other organizations during the last few weeks.

But now, we have legislative initiative in Hawaii where a legislature representing his people has voted and passed a law. It missed by only two votes in the senate. And it can tell you it is most likely it will be reintroduced again in Hawaii. There again there are safeguards included and the safeguards are being expanded and made more strict within the law. No, it won't be a majority of people who take advantage of this.

We are looking at 129 cases in five years in the state of Oregon. The question is not whether having a choice is the thing, it is whether or not you have the right to deprive me of the choice. That is why our organization is called end of life choices.

You should know also there are a number of other states where local activists are hoping to move forward and submit similar legislation as Oregon. Some of those may be important states geographically and politically.

That is why I think as a disabled community, we misaddress this question in a constructive manner and in a manner that allows us to have the safeguard flses the laws that will protect our populations. Just as we can't define what disabilities is, the Americans with Disabilities Act certainly has enough problems doing that and it itself is under attack in many ways by the current administration. We must do our best to participate in this dialogue because these laws are coming. I may be proven wrong as a soothsayer, but that is my impression. Thank you.

>>>: Now, Sara, I know you wanted to address larger issues, do you want Sara to come and then? I think that makes sense. This is our high tech system.

>>>: It is a blessing not to have to keep my own time.

Thank you. Just to talk about what happened in Maine, Paul is right, there was a referendum in Maine in the year 2000 right at the time of the last presidential election. What happened in Maine was a perfect example of the public, the general public's typical reaction to assisted suicide proposals.

Early Paul showed strong public support before the general public was educated about the dangers of legalization.

As this -- so the public support was here and the public opposition was way down low.

As the public education occurred through the campaign, the polls steadily shifted with the opposition gaining in every single poll.

And at the time of the election, as the poll showed and as the election showed, the opposition exceeded the support. It had had time to come up, thank goodness because of the education.

So I think Maine is illustrative. I don't feel the need to address anything else that Paul said. But I do want to comment on the safeguards that are reported to be so great in Oregon and what we have seen on every assisted suicide proposal, whether referendum or bill in the last few years. They are all word for word, the same. Assisted suicide proposals with people with terminal illness, who they claim to be only effecting, is thinking that you can make a clear distinction who is terminally ill with six months to live and everyone else.

Everyone else is not supposedly eligible for asisd suicide and are safer. Owe Poe neps do not include people with disability due to their disability or based on their disability, nor people with chronic illness only people with chronic illness with six months to live. The fatal flaw is there is no clear distinction between terminal or chronologically ill or disabled.

So therefore any attempt to offer people with disabilities protection or safeguards is really words on paper. There is no such thing as a real guarantee, what these bills want to do won't be stretched far, far beyond the pro Poe nept stated intentions.

Let me throw in a concept. People say we can cook up stronger safeguards than see today.

The only safeguards that would be strong enough would be so intrusive into medical practice that I don't think pro Poe nepts would want one. That is a big subject but I will tos it out.

Back to the specifics we see in Oregon that is touted to be so wonderful.

The reason the distinction of six months is so big an issue is is it is extremely common for medical production of a short life expectancy to be wrong.

The evidence is overwhelming the productions of death are unreliable, spervelly at 6 months out.

Moreover doctors and the court frequently classic people with long term disnts as terminally ill. Any gathers of people with disabilities -- I will just try this one.

Those of you who are not terminally im here today how many have disabilities such as such that at one time you were classified by the doctors as terminally ill. We see some happens and it is not a very big group.

So the potential effect of assisted suicide is extremely broad, far beyond the supposedly narrow group that is claimed, including many people who may be mistakenly diagnosed as terminal but have many years of life ahead of them like Dr. RADKE. This pose as danger to those with -- research show that people with new disabilities go through initial derespond depth sy, but later adapt well and find great satisfaction in their lives.

That adaptation takes longer than the two-week wait period required by assisted suicide proposal and the Oregon law. In the early period when one learns the truth how good one's quality of life can be, it would be too easy to make that final choice if assisted suicide was legal.

I want to talk about general safeguards if there is time.

But speaking specifically about safeguards for people with disabilities, I actually want to ask people, who does represent end of life choice, formerly Hemlock, if he is explicitly publicly disavow Hemlock's statement from several years ago that that organization's goal is, in fact, to provide assisted suicide not just for people with terminal ill, as they claim today, but also to people with disabilities.

They have stated that a number of times in the past, they now say it is only for people who are terminally ill. I am willing to see if Paul would terminally disavow that.

>>>: Yes.

>>>: Is that time.

>>>: He can respond now -- this is what I will signature. He will finish and he will make his comments.

>>>: I think now is fine.

>>>: I would just answer by saying the comments and what was previously in the literature of the hem lock society was offensive to the disabled community. I personally found it offensive. It reflected the opinions and the perspective of one or two people who were prominent in the organization at that time and the organization now does disavow that position. We no longer support this notion. I have a hopeless illness.

THE WITNESS: Just like many of you in this room in wheelchairs. It may not be forever, at the moment it is. I don't think I have a right to physician assisted deliverance.

I would just comment on some of the other things that would be worth noting. One of the things found in Oregon and probably also in Holland that physician assisted deliverance extended life, it sends not to shorten it for people who are terminally ill.

>>>: I would note that 35 percent of people who request a he that prescription in Oregon don't use it. They don't use it because knowing they have the option allows them to endure for a longer period of time. I will not use a case example as proof but we certainly had this experience with a man with ASL in Boston wanted to declare his intention to deliver himself because he didn't have the right. In fact being involved and getting more information and knowing the option was there allowed him to live being productive until his ASL took him in his sleep.

It is not clear having an option is a way of shortening life.

Yes, there will probably be tragic cases where people who make wonderful contributions to society that would be lost if they are allowed to make that choice. But again sate choice, from my perspective. It is the same question of choice we have in this country.

We are allowed to vote. Are we always happy with the outcome? That is not clear. Depends on what you think about the current demonstration. Should we take away from the right to vote.

>>>: We should take it away from Republicans.

>>>: The other question that Maryland pro supposed whether or not we would endorse safeguards that intruded on the power of the medical societies. And I can tell you one of the things we are involved in is looking at draft legislation that would be stronger than the legislation in Oregon.

Draft legislation is currently a work in progress, the patient's choice and comfort act, it essentially takes double effect out of the hand of the physician and puts it in the happened of the patient.

So whatever it is you need to relieve your suffering, what it is you need to relieve your pain is prescribed but it is your choice whether or not you wish to exercise that double effect.

And, yes, all the qualifications and safeguards that you have to beter minimally ill and so forth. But essentially what we argue is it takes double effect away from the physician and gives it to the patient and let's them make that determination. It also helps in terms of the attorney's general assault on Oregon because physicians are no longer asked to prescribe he that prescriptions and I think it is a justified fear, will HMOs and organized insurance start prescribing he that prescription to reduce their rolls. HMOs will not honor advanced directives. They are so afraid of the liability issues. There is no such thing in this country as a good enforceable advanced directive. Even if you think you have one, you probably don't. That is another thing we see as an important priority in the debate and an important dialogue for all organizations to be involved with. Time.

>>>: I know we got started a little late, I want to make sure we get to Q and As so I'm going to ask Marilyn to finish. >>>: Just to Paul's comments he is right that in Oregon legal prescriptions have been prescribed and people didn't take them. One of the things we are worried about with this, is taking he that prescription that are prescribed not taken are lying around. Another concern.

He also mentioned the organization cooking up in legislation that would put pain control in people as happens. And I want to say I look forward against a bill that would try to do that. That would be fun.

I was going to say more about the problem with safe guards in Oregon but since they have already been discussed by Paul I don't think I have to.

It would also be interesting to talk about the me ther larnd, which is practice assisted suicide and EUTHANASIA. The only place in the world where we see people being E UTHANIZED not just for terminal illness but chronic illness not just physical illness but mental illness and with and without their concept. It is really scary.

Last to point out I don't know it is a choice for people to choose death when they don't have the choice to have good personal assistant services to relieve the burden on their family and good housing options in the community. So we are very concerned that this is not true autonomy, but fictional freedom, an act of desperation.

Let me really give the mierk to Sara who has things to say about the broader context in which the assisted suicide debate is found.

>>>: Thank you. They said I'm here to replace Diane Coleman. But I hardly think Diane Coleman could ever be replaced. I am honored to be here and present the points she asked me to you today. Real quickly. This is point and counterpoint so I have to do a couple of counter points here.

The point was made that you can't define disability. I very much argue differently. I believe that disability is a natural and beautiful part of human diversity that needs to be protected. I take pride in the disability I haven't I have an immune system disorder that is potentially terminal and also a psychiatric disability.

The other counterpoint I have to do real quick the study happening in whore Oregon was broad up, the point there is physician assisted deliverance from unbearable suffering but what the study has shown that people in Oregon who have requested physician assisted suicide have done so not out of a desire to relieve themselves from suffering, but about the fear of disability and the fear of becoming a burden. Those are the main reasons that are reported in the study and I think that is key and goes to what I'm about to talk about right now which is the larger context in which all of this is in.

You have already heard from me. I believe in meaningful choice. And in order to talk about meaningful choice you have to talk about the context in which the choices are made. So let me give you the context for the choice.

You heard me state that 90 percent of fetuses with down syndrome are aborted, there is a prelive ration of wrongful life lawsuits with parents saying their children with disabilities would be better off dead than born. The pro live ration of violence/Gaines people with disabilities in our society has just exploded.

In April of this year a 7 year old girl with a learning disability was shot in a chest while she was sleeping with a 30 caliber rifle by her mother. She was killed.

Less than three months later, an 8 year old disabled girl mysteriously died and her family put her body in a bag and dumped her on the streets.

Then in July a scientist was awarded a prestigious ethics award and he openly advocates that parents with children of disabilities should be able to killed them up to 28 days after birth.

In August a 6 month baby girl had her throat slit twice with a kitchen knife by her mother and she was killed. This is is culture that we are in right now. This is just the last six months I'm talking about; okay. I don't call this a vulnerability argument; I call this targeted death.

This is a eugenic culture and a eugenic thinking we need to call for it what it is. This is a thinking where some lives are not considered worth living.

For those of you who are history majors this should ring some bells. There was another time in history where a lot of these things were going on and that is in Nazi Germany with the enact tvment program, there was mercy killing that resulted in Ester min nation of some 200,000 people with disabilities. A lot of arguments being made today, this culture the exact same culture.

The people exterminated in Germany, many wered to death. How many people are being STARVED in hospice.

That brings us to the case of Terry SHIAVO in Florida. You may say what does this have to do with physician assisted suicides. It has everything to do with it this is the case that disability rights activists said would happen for a long time. This is the slippery slow we have been talking about.

Terry is a woman with a brain injury who is in a hospice in Florida. She has been -- she had a feeding tube that the courts just removed on Wednesday and she starve to death unless we do something about it.

This case effects everybody who is now or one day be in a position of needing guardianship or who in the case of Terry has a guardian who they did not choose. This case also brings up the standard of care. Standard of care is supposed to be clear and convincing evidence of what you would have wanted but in the case of Terry, there is no clear and convincing evidence in this case.

The other thing that Diane wanted me to bring up is lots of people who are on feeding tubes, they are on the feeding tube not necessarily because they can't eat, but because there is no staff to feed them.

Terry SHIAVO we don't know whether she can eat or not on her own, no one has given her chance, her husband, her guardian, her protector won't allow anyone to feed her. There is some key facts about this case you should know.

Number one, her husband, Terry's husband is saying that she would rather -- she said to him that she would rather die than be in the be in the condition she is in right now.

But -- there is key -- he never said he knew anything about saying this until after he got the close to one million dollar mall practice judgment that was supposed to cover the rehabilitation expenses. He gets the huge judgment and says now she says she doesn't want to live in the stage.

Her his won't let others try to feed her -- my time up?

>>>: It is about to be up.

>>>: The other thing that needs to be pointed out, a lot of people say she is in a veng theytive state. She is not this a VEGETATIVE state. She reacts to music, visitors she can say, yeah, help me. Speech pathologist have said she is just like any other severely brain injured person.

There are a couple of other key facts we need to think about here and be aware of about the dirty politic. The hospice facility where she is at that is killing her, they coordinate end of life advocacy around the U.S.

Sendly the CEO and hospice at the Florida sun coast where Terry is at, she is on the Board of Directors, the partnership for caring that coordinates funding for the rallies point.

Three, they have received 150 million dollars the Robert wood Johnson foundation has invested in end of life concerns.

Number 4, George fellows, Michael SHIAVO attorney he was on the board of the hospice until he took on the husband's case. Since that time, this attorney has reportedly pocketed most of the 700,000 dollars award for Terry's med cool care and legal fees to end her life. A lot of dirty politics here.

The main thing Diane wanted me to get across is right now this is not vulnerability. This is targeting people with advanced Alzheimer patients with severe brain injuries and people with severe mental retardation. That is who is targeted right now. We have to ask who is next. This is a tip of the iceberg, a sign of what could come. The courts are not protecting people.

They removedterryter rice feeding tube. What is the legislative branch doing? They are supporting last acts and end of life is working to expand the power of is your gates to withhold life sustaining treatments. So we can't rely on our government to protect us.

As a society -- well, first I want to encourage all of you to go the rally tomorrow, we are going to call for President Bush to give governor Bush the authority to become Terry's guardian. So that Terry can live. As a society, let us not look back as the Germans did and say, "What could we have done more? Why did we not do more?" Terry is still atoday and we need to take responsibility to ensure her and all people with disabilities right to life.

MODERATOR: All right. I know we have a late started, but I would like to go to responses from who is here. Gentleman with the white tie.

I do want to say because we are running -- because of the time, if people could keep their comments -- there question, actually, I don't know to under 10 seconds or something bizarre. If you ask a two-part question don't expect it to be answered. They told me get them out, get them out.

>>>: Jerry from NOW and I am also in BLIND.

I see an awful lot of parallellism between the people who are advocating against giving individuals the right to make decisions about ending their lives and the arguments the people who are against giving the right to make people the right to have abortions.

I find it ironic that Jeb Bush would be called upon after he tried to intervene to prevent an abortion for a mentally disturbed woman. I think we need to look at the parallellisms and clarify our thinking where we are on the issues.

I don't know enough about Terry's case to know who is right. I do have the feeling that if she is as responsive as I'm hearing today she S that somebody should be able to go in and ask her at least yes or no question that she could react to with her eyes, if she has that much physical control.

If she can control her gaze and if she can go left for yes and right for know, somebody should be able the find out what she wants. Now, it is entirely possible that her husband and attorney are fighting to prevent that and this comply cates things enormously. In which case I would certainly be in favor of the truth getting out.

>>>: I just like to comment especially on the last person who is speaking about the Terry SHIAVO case. I think set a terrible tragedy. It is not one that should be the center of our politics. What it illustrates cloorly is the importance of enforceable advanced directives.

When you fill out an application for a driver's license you should fill out an advanced directive at the same time. We need to have laws in the country that enforce advanced directives. I won't second guess her the court or her parents. I think itty pie fies why it is more important why it is more important we pay attention to end of life issue.

>>>: Here and the woman to my right.

>>>: I have a problem with advanced directives. Because once you are in the process of being in a catastrophic disability situation or you go from being, quote, able bodied to disabled and maybe you are in extreme rehab, how do you know that what you sign before you experience the process of becoming extremely disabled is the way you're going to feel when you are going through the process.

Your don't know that until you start that journey of disability and hopefully rehab. So I don't understand the value of advanced directive because the process of disability and then rehab is a very singular experience. But I myself know, because I went through it, and where I thought that I would not want to live, as I was going through the process of rehab, I realized I wanted to live.

Now, if I also had a problem with communication and not being able to communicate that to people you are killing me while I'm trying to stay alive simply before I became disabled I made that decision. I have a real problem with that.

>>>: Can we have Karen respond.

>>>: I think even with a advanced directive, as long as you are able to communicate you can always override it at the time.

But, you know, more to the point, yes, that is a concern with advanced directives, but are you going to use that as -- I mean is your argument your don't think people should have advanced directives or to make advanced directives? Because I don't think people can be deprived of that right.

>>>: They don't have to but I don't think the value, the emphasis that is being given, the value, the importance of it because that process of disability and then rehab is you don't know that until you go through it.

I just don't think it should be given that kind of importance or that legal weight that it carries.

>>>: I would agree with you entirely and I would say that is why there needs to be a dialogue on this issue and why it should be a more care careful definition of what advanced adirective needs to say.

>>>: I want to announce room assumes for those who need to leave right now. At 5:15 the networking group, mental health, mental illness, judiciary -- is that right? Queer, is congressional. It says the SU svmentdESSHANA group is not assigned to any group. If you want to meet there go there and make your own arrangement. So nothing is going on at SUSEHANA group. And at 7:45?

>>>: No, no two different groups. One is in judiciary and one is in congressional.

>>>: Queer is in congressional, mental health and mental illness is in judiciary. Then at 7:45, stop the violence, break the silence is in judiciary, global sisterhood is in SUHANA, women and fill LAN throw pie is diplomat and ambassador. And at 9:30 singing and body electric is in SUSQUANA. Mother tong tongue is congressional and befriending our bodies is in judiciary. >>>: Two things, this discussion of advanced directives brought up one thing and I will state my bias upfront I'm a lawyer. I have written dozens of advanced directives at no charge for people with disabilities particularly people with aids

AIDS.

I would strenuously disagree that when you get your driver's license is the appropriate place to sign a advanced directive. I disagree it should be done in the hospital when you go there.

It requires precisely because of the issues we discussed, a serious discussion of what you might want. Yeah, you want to pull the plug, most of us can say that, but does that include nutrition and hydration.

When easked people and I instead of giving them the usual form and said sign here, 3/4 of them said no, people feel differently about nutrition and hydration as opposed to pain medication and other things. I strongly encourage people to find someone who will work through those issues with you and not just to sign the standard form.

There is no state in this country in which you cannot write your own to say what it is you want to stay as best you know it today, which may, indeed, change. Mir Lynn, the question I had was, we know people with disabilitys are being murdered all the time by doctors today under the present system.

Wouldn't it be better to at least have the transparency that Paul mentioned so that we can look at when this is happening and why it is happening and how we can change it?

>>>: That is a good question, thank you for asking it. I think it would not be better and let me tell you why. First, let me tell eye about the Netherlands. What research is showing in the Netherland is that some 50 percent of doctor carried out assisted suicides and EUTHANASIA go unreported.

When doctors follow the guidelines of the safeguard they report. When they don't follow the guidelines they simply don't report.

We don't know in or Oregon what is the non-reporting. It is theoretical mandatory reporting. Very light weight. There is no reason to think it will help. What it will do that is scary, is so change the culture of medicine.

When a depressed person asks the doctor loathe, "Oh, my God I feel like I want to die," assuming think are terminally ill, if -- to doctor will be forced to say you have the alternative, if you make the request today and repeat it in to wees I can give you a pill that will kill you. They have to say that. We are seeing the shift in Oregon and there is a lot of scary things to say about that. So just that on your question. Should I do the comment on the other question.

You can do it now or we can take -- toe by and the woman in front.

>>>: My question is of the states that do have this and like the doctor KORVKIAN people, does anyone have the statistics of the break down in general of those that par took upon this journey?

>>>: Yes. >>>: Overwhelmingly women.

>>>: The sheet I gave you has a gender break down for Oregon.

>>>: And to the front.

>>>: I want to thank all of you, this has been a wonderful discussion.

You may think this is preverse or naive I would like the panelist to think about the things you have in common. Speaking of collaboration and coalition, you should think about how your groups can have a greater dialogue on protections of disabled people, empowerment of disabled people and offering more choices that are viable and meaningful.

>>>: Couldn't agree with you more.

>>>: That is a moderate or the's closing. You should have done it. It is not yet time.

>>>: That is a great discussion and I am never opposed to dialogue. I take part in dialogue anytime I am asked to or have the opportunity.

But what we find is -- and any of you have worked on concrete policy issues, and I'm talking about policy debate, legislative proposal, regulatory proposals that are deciding on words that effect people as lives. In addition to whatever dialogue that is going on we are certainly not opposed to participating in.

I am often involved in very specific legislative fights in particular states where hem lock end of life choices is on one side advocating for something that will, I think, cause huge social disadvantage. And I'm on the other side trying to prevent it.

You don't -- I mean it is not a time when -- you know, it is just sort of -- I don't oppose the dialogue it is just that is not the only thing I do. And if these proposals were not there I would be happy to make it the only thing I do. While the laimptive proposals are potentially possibly passing, I need to work there and it is as verts sary y'all. Policy is adversarial. It would be great to get away from that, but I think societies that have been trying to do it haven't worked that well.

I want to say in closing about a couple of things. One about a question and one about a request.

I thought it was very interesting when the gentleman who made the first point that said the arguments againsted suicide are like the arguments against abortion. And I think there were some notes and that was perhaps intended to be a convincing reason to support legalization of assisted suicide.

What I can respond to it is I think while it might be a fine point to make in a whole group of argument, if you want to pass this, if that is all you are going to stand on it is a pretty good example of a very classic simplistic statement that we see as a typical reason for people that want legalization of assisted suicide. I'm pro-choice on abortion, very much so. And I offered a number of significant and legitimate reasons that are more involved in a five second sentence and there are others that I didn't have time today.

P fer if you want the argument of legalizing assisted suicide, I hope they would address the analytical issue that is raised and actually Meade meet the concern that is expressed and not let the argument be "gee, you sound like the people that oppose abortion."

The question is to those who know a lot about advanced direction. A number of people working on the bioethics issues are in a quandary. Advanced directives got all their juice in the 80s and 90s to prevent over treatment at the ebilityd of life in the medical system, being tied to machines and so forth. Over treatment does still exist to some extent in the medical system. It now coexists with another shift toward radical under freement treatment.

Those who want to advocate for advanced directives but the model as varnsed directives that are written tend to steer you in the choices of objecting over treatment and we are desperately searching for model advanced directives who address undertreatment and say we do want to live, we do want treatment. And finding pod Dell statements that say that, is something that a lot of us would love to find.

So if you are someone who is working that and knows, I mean knows like has expertise in that kind of advanced directive please come and talk to me before we are all done.

MODERATOR: I want to thank you all for being here, Carolyn, Paul, Marilyn and Sara for being here. And thank you. Good evening.

Next up is here is going to be the networking group. Again for you who need to know mental health and mental illness in the judiciary meeting and here is queer is in congressional and no one is in SESWAHA. If you want to meet there you can. I will leave room assessment to be here.

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