I'm always pleased to have the opportunity to express my views on these matters, but in this particular case, it was a particular honor. Because I agree that is important. to consider and appreciate the wrenching experience has the families have dealing with the loss of a loved one and struggling with the important decisions. Which families often are compelled to make in these circumstances? I also agree that it is too often that we forget that these cases involve the real life struggle of people coping with family loss. unfortunately I think that way too often view termination of treatment. As a sole or primary means to release the families from their burn. I just don't believe that's true. And that's why I appreciate what the quillons have done. And their determination to offer real and substantiv help the families in the circumstances by finding a by founding a hospice in their area. This is the approach I have taken. In 1982. I found at the hospice of the Wabash Valley in my community. Put your serve thousands of families and patients in our five County area. Over the last 10 years. Helping them the families and the patients deal. What's the Exquisite trauma of the loss of a loved one? The hospice recognizes as we too often do not recognize. That there are more patients when you have a terminally ill patient, then then the individual patient him or herself. What does the family? Needs to be treated as a patient. the with the onset of a disability or a terminal illness What's that on set? The family feels lost and Grieves? It doesn't begin at death, but it begins. at the beginning and if they need help. And the hospice philosophy is to provide that help. from the beginning through the dying process and after death No. Also an approaching this conference, of course, I recognized that I often have found myself and the other side. of many of these families in court now that led one of my colleagues just suggested my role here was to come here and bring a wet blanket. Another one, perhaps more accurately describe my role as as coming here to play David. Excuse me coming here to play Daniel and I think George is here to play The Lion. I actually think that that I was invited here for more important reason. Because I agree that there are a lot of people that have been left out of this debate. And there is still. A very important group of people whose voices are not being sufficiently hurt. That is people with disabilities. No, I think it is clear that many people and perhaps many people who are attending this conference have found it easier to accept death. Then they have disability. And I have found myself in court representing people and organizations that represent people and are made up of people with disabilities who believe that people with disabilities have a life worth living. I've been on briefs and represented the Spina Bifida Association of America the national Down syndrome Congress passed which is the association of persons with severe disabilities Association for retarded citizens of the United States adapt, which is why self group made up of people with disabilities and many other groups. They have taken a very strong stand in this area. They've adopted formal positions. Which opposed the withdrawal and nutrition hydration? Prompt people with disabilities in the kinds of cases that we are discussing. Nobody had done so based upon two propositions. The first is that people who are disabled are entitled to the equal protection of the laws for their basic needs. That a disabled person has his or her own rights and interest which are entitled to be protected under the law. And secondly these organizations and people with disabilities object to the devaluation of the lies of persons with disabilities not by their families. But unfortunately by the courts and the laws that flow their front. To them and to me it is not a question of the goodness of the decision maker. but the goodness of the decision that is the question. It's not who decides. What is decided and what are the justifications for? Now I'm trying to reach a good decision. Your new start I believe was seeking the best decision maker. So it is quite right I think for our law to say. what to give a presumption strong presumption two family members who go to get State authority to exercise authority over a family member in the when you have an adult child. I think that's quite proper quite right. But the inquiry, you know doesn't end there in my view. It's and it's also not the motive or intent. That is determinant of either. It's what is being decided and what's the nature of the decision? No, I understand and sympathize totally with Joe Cruzan statement quote. I don't give a damn. I didn't give a damn where it would lead in the quote. I understand that. He was in court trying to relieve his own personal situation and do the best that he could do for his daughter. And I understand his position. But I but I don't agree for the rest of us. That is the rest of us should care. What happens in that case? Because when that case is brought. It's not simply relieving a personal situation. It's creating law. and law governs Remy other people than the people in that dispute organ that situation law is generally applicable. and if we say Families have the authority to choose death for a family member in the Cruzan case. We're saying that for millions of families that may be good news or bad news, but it's the truth. We are creating law that is generally applicable. and the irony in this well, we recreate General all we have we have to be realistic. about the circumstances not of that individual case only but the situation generally and the irony is that over the last 20 years. Our society has been in the process of adopting a whole planet P plenty of laws. That address the problem of adults being abused by their families. We've created adults don't use laws and in nearly every state we've adopted quote rights of nursing home patients and nearly every state would simply reflect reflect the sober recognition. That families and Healthcare Providers don't always act in the best interest. Are there dependent family members? That's what Society has said that we ought to adopt standards or mechanisms of protection. It would be applicable in those circumstances. so for me I don't think that I know better. But I do think that there is a role for society to place limits on the decisions that one person makes for another. now the context of these cases because I think that's important. The question was asked yesterday. What do you say to those people who believe that medical treatment should not be stopped at any cost. That's not my position. No as I understand it the positions that have been arguing in court. Because I think we are addressing a limited class of patients. Lobster not important because they're limited they are. But a limited class and that is severely disabled patients who will live indefinitely with minimal care. We're not talking about patients who are terminally ill in the understandable sense that they are in the process of dying and with or without medical treatment. They will die. Anyway, we're not talking about patients who are in pain. We're talking about patience and we're not talking about patients with respect to medical treatment that is futile in the again understandable since then it will have no effect in terms of cure on Miele rayshun of disease. Or that is ineffective. What is unduly burdensome? We are dealing with patients that will live in definitely but in a severely disabled state. and the proposition that is whether we are dealing with is whether or not We should take a step. That won't inevitably cause their death. the US Supreme Court in the Cruzan decision talked about the withdrawal of food and water talked about its quote dramatic consequences in the quote a decision quote, which all agree will result in death in the club. They called the decision to withdraw food and water as a quote choice between life and death and of punk quote a decision to terminate a person's life. Immigration we are talking about cases in which the patient him or herself has not made a decision for him or herself. That's why I believe this is a limited. circumstance the does not draw in the question the authority of families to make a I won't even go to determine or to be involved in many decisions about their family member. Or the authority of a competent patient to make a decision, which I believe is entitled to much more weight. That's what I'm talkin about a category of patients in which Brock has been chosen by another. the other thing about this context is is it there is in these in these circumstances? A duty to provide care that is there is often a numerous state laws are there was a 20-page brief filed by the nursing home in the Lawrence case setting forth all of the different statutes in Court decisions. Which require the provision of nutrition hydration to Sue and Lawrence? So we have a generally applicable requirement for this dependent person. The care food and water specifically be provided. But in these cases that the proposition is should there be an exception? So that leaves me talk to to what I believe is at stake in these cases. the first Is that we are making an exception or the proposition that should we make an exception? From the general duty to provide care in this circumstance. And if so, what is the justification for it? The justification that the courts commentators yeah in the circumstances. Is a devaluation of that of that person's life based upon disability. Of course in New Jersey Supreme Court put us on this road. Where they look disgusting the Quinlan case the states. interest in preserving a life of Karen Ann Quinlan They said quote the state's interest in preserving life diminishes. As the prospects for Recovery them. And because she would not be returned to a quote cognitive and sapience state and the quote the state had no interest in preserving her life. What do they say? Aren't they just simply saying? Did she is severely disabled? I will come out of it. That's what you think. Are they saying that because of the degree of her disability? The state has no interest in her life. Aren't they discounting the value wing? her life based upon her disability Miami there any state interest in protecting life was reduced when a patient's persistent vegetative state means that there is no Health in the true sense and that's no life to protect. She's severely disabled. I won't recover. So the state normal who has an interest in protecting life of all of us. Each and every one of us in this room. They have no interest in her. now The second thing that's a steak. It seems to me is whether or not we're going to treat these patients as having rights and interests of Their Own. not derivatives of the family or part of the family but an interest of Their Own I would suggest they have two interests of their own one is in their bodily integrity and autonomy, which gives them the right to consent to or refuse medical treatment. And finally as the Cruzan US Supreme Court case set forth. The patient has an interest in her own life. It's a personal interest her. and it is our to the extent that we are prepared to recognize that someone has their own rights and interest is the extent to which we treat them as a person. I finally What's at stake is the authority of one person over another? as a US Supreme Court in Cruzan pointed out There's a big difference between a decision by a competent patient. for yourself and a decision for someone else and this really gets us to the to the night of the issue. Because it's my view that what is being suggested is. Look for all practical purposes. And contrary to our develop into standing and recognition of people as individuals and persons. But in this circumstance one should have unlimited authority over another. We have no other area of the law with this proposition would be seriously considered. The most the closest analogy if you will is relationship between parent and child when the child is in their minority. Parents have not only the right and Authority but is constitutionally protected authority to supervise their upbringing and education. Does that mean that they have unlimited Authority? River authority to the trim to guide their religious training and practice do they have the authority then as a Jehovah's Witness to refuse a blood transfusion for the child. The answer has been no. Is the New Jersey Supreme Court said because while a parent has the right to make a martyr of themselves to their religious beliefs, they do not have the authority to make a martyr of their child. Do they have the authority to determine the education of the charge certainly do they have the authority to say the child shut out the educated at all? No. And other required to provide for the basic needs of their child. Because we recognize the children are individual persons that have rights an interest. And then no persons Authority even a parent in a parent-child relationship has that at Absolute Authority so that brings us Full Circle The Challenge is it seems to me? What is the justification? in these cases for withdrawing food and water In these cases, but not in others. And which leads me to The View that while we want the best decision maker and could find them. The Thirst third parties do not have unlimited Authority but that the law should provide limits to the authority as they do in other areas and one of those limits would be the right to choose to.