What I’d like to do with the time we’ve got is to spend a little bit of time talking about the family of Nancy Cruzan and her story. It helps me in talking about these issues is to try to figure out a way to put Cruzan into some historical context. There are a variety of ways to do this, but one way I’d like to do this… I teach from time to time at the Law School at the University of Kansas. One of the classes I teach is called Law and Bioethics so let’s start with the exam that I gave last year. Last question, twenty-minute essay question and for you students, I know you did not attend the class where we talked about it and you didn’t read the text. That actually puts you in the same boat with two people who took the exam, so you can’t get out of it that way. But here’s the question on the Law School exam. Well-known, much beloved local rabbi driving down the New Jersey turnpike has a horrible car accident. Ambulance arrives, resuscitate the rabbi, take him to the hospital; it’s not just any hospital. This hospital is a new joint venture between the states of Pennsylvania and New Jersey. And it turns out the hospital is straddling the state line between those two states and as fate would have it, the bed that they take the rabbi to in the ER is in fact, straddling the state line. The medical team does everything they can as to bring about recovery without success. They do the various clinical tests that the medical team would do to see if there is brain activity, cornel reflex, other tests – nothing. They do two separate electron cephalograms, flat-line, no electrical activity. But, the rabbi’s heart, his lungs, continue to function with all that we can bring to bear in the modern day ER. Dejected. The doctor walks out just as the rabbi’s brother opens the door, rushes in, sees the doctor, and says, “Oh my God doctor, my brother – is he dead?” What do you think? You have twenty minutes.

It’s an upper-level Law School exam so of course the answer is going to be “it depends”. In Pennsylvania, he is most certainly dead. In New Jersey, he may or may not be dead. Depending on what the attending physician knows about the tenants of the rabbi’s faith. Depending on what’s written in his chart about his own beliefs. Depending, and this depends on how you read the law, on what his brother says as he rushes into the ER. The point isn’t to study the niceties of how some states have put religious exceptions into our definition of death. Isn’t it amazing that that could be a serious law school question? It is to me. When I started law school in 1979, there wasn’t a class at my law school called Law and Bioethics. My guess is this is probably one of the few places in the country where there was such a class. For most of recorded time, when you were dead, you were dead. Your heart, your lungs, your brain all stopped at the same time. Medical technology changed that equation and legislatures and lawyers came in behind that, changing the definition of how we define that.

Second question and I know we’ll get a split on this one. How many of you used to watch Dr. Kilder? And some of the students are going “What?”. It was a medical show. Dr. Kilder was the kind of doctor that you would want; his success rate was unbelievable, but every now and then Dr. Kilder would have a case where things looked bad. He would turn to a nurse and say, “Go get the bird”. Anybody know what he was talking about? Some of the senior doctors do. One of the first versions of a respirator or ventilator invented by a doctor from California named Forest Bird. It looked like a green lunchbox on a stand. In Kansas City, a large city in the Midwest, at a large teaching hospital in the late 60’s there was a bird respirator in use in that hospital that did not have an automatic switch. Student doctors and nurses would sit in three hour shifts with the machine and a patient and every five or six seconds, flip a switch, blast a burst of air in the body and turn the machine off. How often do you think the questions about prolonged use of medical technology came up in that setting? They didn’t.

We wanted for most of recorded time, we wanted everything of what the doctor could give us, because it wasn’t much. Fast-forward to a couple of years ago, Journal of Nature article: this doesn’t deal with end of life, but it is the most telling example I know of the advance of medical technology. Operation at Mt. Sinai Hospital, a doctor doing gallbladder surgery. The reason it was in the journal was he was doing the new robotic surgery, so not standing over his patient, but in a little bit of capsule, operating joysticks with rubber bands around his fingers to help him manipulate the instruments, looking at a screen. And his patient wasn’t his outside his capsule, she was overseas in France. They called it the Limburg Operation after the first trans-Atlantic flight. I’m forty-nine today, God-willing, I’ll be seventy-nine in thirty years. If we’ve gone from the Bird Respirator to the Limburg Operation in thirty years, what kind of choices am I and my alleged eighty-million baby boomer colleagues going to have about medical treatment? I think we’ll be talking about this as a society all the time. And at the base of that discussion, when we talk about where the law, and medicine, and technology intersect in some way will be the family of Nancy Cruzan and their story.

Many of you, I know, know the basic story. It starts out like a lot of tragic stories with a phone call in the night from the state trooper. Family rushing to the hospital and then slowly over time hope fading. In the Cruzan’s case, Nancy was in a single car accident. We don’t know what caused the accident. We do know the basic path across the centerline, went off the side of the road, hit several small saplings, hit a mailbox. Was apparently going fast enough that she shot up a culvert and cleared the road because there were no marks on the road, smashed a fence on the other side, the car flipped and she was thrown thirty-five feet beyond that point. From the point where she left the road to the point where the car stopped was almost three football fields, so we know she was going very fast. Neighbors someway down the road heard this commotion, woke up, came running out, took in the scene, ran back, woke his dad, dad came running out, ran back yelled to his wife to call the highway patrol. She did. Some time later, ambulance and state trooper arrived.

As we reconstructed that night and really years later, as part of getting ready for the first trial in Cruzan, I concluded it could well have been thirty minutes, perhaps longer that she without oxygen before she was revived. At the near least, it was at the teens. Every part of her brain that made her uniquely Nancy Cruzan was gone by the time the EMT’s; was not coming back. EMT’s knew none of that when they revived her that night. Family knew none of that when they sat in the ER waiting for some news on the various emergency surgeries going on. Their education about anoxia came over a long, long period of time and in the same way, if you asked them, “When did you lose hope? When did you start to believe that your daughter and sister was not going to recover consciousness?” They couldn’t tell you. Visiting Nancy in the various hospitals and institutions simply became their life. Became what they did. But they did reach a point years after this accident, where tentatively they began to talk as a family about what their options were and what Nancy would want.
They realized they were down to two choices, both bad. Nancy very predictably had moved from a full coma, a couple weeks after the accident, her eyes opened and she moved into a kind of unconsciousness that the doctors described as the vegetative state and after three to six months, that diagnosis was changed to the persistent or permanent vegetative state. Some portions of her brain stem, that which controls her reflexes survived the accident. Her eyes would open, move around the room, at time they would appear to fix on someone, then they would move again. She could very slightly move badly paralyzed limbs. Her nails bent in to the point that her parents would wedge her hands back and put a pillow in to stop the nails from cutting into her wrists. The only technology in addition to good nursing care that was keeping her alive was the feeding tube that the family had consented to within weeks of the accident. Doctors said that she would never recover consciousness and that she could live thirty years in that condition. That was one choice. The second was to seek removal of that tube and have that hand in the death of their child. The accident had taken away good choices.

As they talked about those choices, it drew clear to them that they if Nancy could speak, she would tell them she wanted the feeding tube removed. They were not a family of means, they began scouting around for lawyers who could take on the cases of public service or pro-bono case. I had just recently moved back to Kansas City. I began practicing in D.C., just up the road. Just moved back to Kansas City and joined a firm, one of the senior guys in that firm took this case, agreed to take the case. In a cautionary tale I always give to new law students, he called me and said, “It’s not any big deal about a half-date trial”. The issues look interesting and I said sure and off we went. We had an three day trial in Southern Missouri with the Attorney General of the state and the Department of Health in which we won. They appealed that case directly to the Missouri Supreme Court where we lost in a 4-3 decision. And we decided to petition the U.S. Supreme Court to hear the case, not necessarily hopeful that they would. As many of you may know, the Supreme Court takes a very small percentage of all appeals that are filed there. In almost every case, it says, “We will not hear your case” and the lower court decision stands. And they had turned down in the past from New Jersey, the Quinlin case and two other so-called “right-to-die” cases. So we were not hopeful that they would take Cruzan, but they did. And from that day, this blue-collar family found themselves moving very uneasily right into the center into a national debate about what was right for their daughter and their sister.

At all appellate court levels, but especially at the Supreme Court, groups with an interest in a case can file papers with the court. They’re called “friends of the court briefs” where they say here’s who we are, here’s our expertise, here’s how many people we represent, here’s how we recommend you decide this case. If the Central Virginia Care Initiative wanted to file at a case that’s up there right now, if it had an interest, it could. In Cruzan, there was almost twice as many of those kinds of briefs filed as had been filed in Roe v. Wade, the first abortion case. Many, many groups supporting the family - American Medical, American Nursing, American Hospital Association, many ethics groups, many national religious groups. Almost exactly the same number of groups on the other side including medical ethics religious groups, the state of Missouri, the United States government made the decision to become involved in the case at that point and they opposed the family as well, U.S. Conference of Catholic Bishops. So there were powerful forces in society on both sides of this question with this family caught in the middle of that decision-making.

The court decision came down in 1990. Was a little something in there for everyone. Of the nine justices, five wrote his or her own opinions. It was a five to four decision. The court did say for the first time that all of us: conscious, competent adults have a federal Constitutional right to make decisions about medical care. Had never said that directly before. Importantly, for people interested in the issue, the court also said that a feeding tube is a medical treatment like respirator, like dialysis. It’s a technology that’s taken the place of a nature function that’s been lost, typically intended as a bridge to recovery. But, closer to home, the court also said there is nothing in the federal Constitution which requires a state, in this case, Missouri, to defer to the parents of an adult to make medical decisions for that adult once she fell incapacitated. If Missouri wanted to say, “We only want to know what Nancy Cruzan’s wishes were, her own wishes,” it could. That did not violate the federal Constitution. From our point of view, it was a hard day. That phone call to Joe Cruzan was a hard phone call that day.

The court did give us a path to have a second trial based on new evidence, which we did the following fall. Again, the trial court ruled in the family’s favor. This time the case was not appealed. Within minutes of receiving that court order, Nancy’s tube feeding had been removed at the state hospital and we were moving her into the hospice wing of the hospital and then over the course of the next ten days, we saw protestors arrive down in rural, mountainous Southwestern Missouri. Satellite television trucks out front. At one point, they tried to gain access to Nancy’s room. Several were arrested. The facility was locked down. By the end of some days, there were as many as thirty-two police officers in the small hospital between the family and the protestors.

So a story that started out like a lot of sad stories in the beginning. By the end, wasn’t ordinary at all. It was really unique in our culture. The family throughout, but most especially at the end, tried to keep their focus where they thought it should be which was on their family and they drew together. If you’ll indulge me, I want to read one passage from the book from near that time, from the end of the story because I think it helps fill out who these people were and what their story means. This is from Christmas Day of 1990- this is a hard part of a tragic story. This will put us at the bottom of the valley and then we’ll spend a couple minutes before I close hopefully climbing out. Because I think the Cruzan story is ultimately a story of hope and a call to arms for the rest of us, but first this.

By late afternoon, the nurse who came on after Angela could not detect Nancy’s blood pressure. Her breathing had become slightly more rapid and she was less reactive to stimuli. At 5:05 PM, Dr. Davis downgraded Nancy’s condition from serious to critical. Yet her appearance remained peaceful. The trembling of the day before had stopped and by now, even her neck had grown less rigid. The family sat around Nancy’s bed talking, holding her hands, and praying. When the new nurse arrived at midnight, Joyce (that’s Nancy’s mother) asked that she not turn Nancy or try to take her blood pressure. Joyce didn’t want Nancy to be disturbed any further. Joe (Nancy’s father) kept falling asleep in a chair and Joyce made him go across the hallway to rest in a bed. She told him they would come get him if anything changed. Kris (that’s Nancy’s sister) was lying on the floor in a camping mat that Uncle George had brought from Colorado, dozing on and off. George sat in the chair doing the same. Joyce stayed awake. Around 1 in the morning, Nancy’s breathing grew more labored. At about 1:15 AM she spat up about a tablespoon of dark, foul-smelling liquid. Joyce cleaned it away and called out to Uncle George, “George, go get Joe”. Joe walked back into the room with his uncle, startled out of an uneasy sleep, Joe’s hair going in several directions. George left to go get coffee to leave the Cruzan’s alone. The three of them stood around Nancy’s bed. Nancy’s breathing grew weaker. For the next hour and a half, they held her hands, kissed her, and told her they loved her. Joe put his forehead on Nancy’s and whispered, “Everything will be okay.” Around 2:30 AM, Nancy’s breathing grew more labored. A book one nurse had given, Joe called it, fish out of water breathing. Joe cradled Nancy’s head in his arms. Joyce stood right next to him holding Nancy’s hand. Kris stood across the bed rubbing her other hand. At 2:47 AM, Nancy’s breathing stopped. Joe reached his hand in Nancy’s face and pulled her eyelids closed. Uncle George looked back into the room and saw the end had come. He walked down to the nursing station and said, “I think it’s over”. Fifteen minutes later, Joe reached me, “Bill.” “Hi Joe” I said not fully roused from a sound sleep. “It’s over,” he said his was voice clear and steady. “Thank God,” I said. He told me about the last few hours. “What are you going to do now?” I asked. He paused for a time. The question harder than it sounded. “I guess we’ll all go home,” he said.

Now if we did just stop there, you would have heard a little bit of a tragic story like a lot of tragic stories around us. Joe Cruzan always said that life can turn on a dime. One minute his life is fine then a car tire goes off the road and it’ s changed forever. Cruzan of course meant more than that to the rest of us. When it was first in the news in ’87 into the early 90’s, we saw an increase in the focus on the issues it raised that we hadn’t seen before. The federal government led by Senator John Danforth from Missouri seeking to correct what he saw as a problem that came out of his state passed the Patience Self Determination act where we’re told about healthcare planning when we go into medical institutions. Many states, including Missouri, passed laws seeking to address Cruzan. But I think more importantly than the law, people heard the story of Nancy Cruzan and it caused them to stop for a second. Like Terry Shiloh has today, like Karen Quinlan before. To stop and talk with our loved ones about a topic that we don’t often talk about: what our views are, what our values are, what would we want were we in Nancy’s Cruzan’s shoes. I’m not going to do it to you guys, but I know based on a statistically significant sampling of talking with medical groups everywhere that if I said how many of you have an advanced directive, some hands would go up and then a lot of heads would go like this, like the principal was at your school. You’d think I got the form, I mean to have that talk. Even lawyers, even medical providers, we just don’t necessarily tackle this topic because it’s easier not to. Let me just come to the end and close and give you the example of my family because if you’ve taken this time out from lunch to come listen to a lawyer talk briefly about death and dying, you’re probably going to be the instigator in your family and with your own patients. I don’t go home every Thanksgiving and say, “Mom I’m home, let’s update the death and dying talk”. But I did do it once. I did show up with the forms and said we’re going to have this talk. Sometimes it’s the adult children who are hesitant. Sometimes it’s the parents who are hesitant. In my family, it was my mom. She said, “I really don’t want to have this talk with you kids. You know what I want”. I said, “Mom we’ve got no idea what you want”. She said, “You’ll figure it out when the time comes”. I said, “Great, that’s helpful”. So we started in our discussion with my siblings. They obviously followed the Cruzan case. That was a natural place to start the discussion.

My experience has been that if you can start the stories as opposed to abstract concepts - if you’re comatose, do you want blood products – that doesn’t mean anything to most of us. But if you can start with stories, the first story virtually always leads to a second story and then another. In our family, the discussion led to a neighbor across the street from my sister whose father had Alzheimer's. Clear path downhill ahead of his dad. They never talked about either the big or the little decisions with Alzheimer's. And he and his siblings we terribly conflicted about do we treat pneumonia, do we insert a feeding tube, and on and on and on. Our decision continued. We came to the natural ending. Tried to draw my mom in without success and I said, “Mom maybe we shouldn’t worry about what happens to you because you don’t seem to be worried about it, but think about this: your last act on earth is going to be a lapse into some kind of coma probably and then word will get out that the Cruzan family lawyer did not even have his own mother’s affairs in order. So the last thing on earth you’re going to do is embarrass me. Do you want to do that?” and she said, “Give me that form”. And she signed the form and made me her health care proxy and then we talked a little bit about Nancy and about the neighbor. And we talked a little bit since, not in the detail that my wife and I have talked when we walk the dog and probably will never be that detailed. Because this is what I do and so people around me have just talked about it more than others. But when the time comes for us to make those decisions for my mom, if 2.5 million of us die in this country every year and if the AMA is right that most of those deaths occur in an institution and as a result of a decision, the idea that nature is taking its course has fallen by the technological wayside. So when that times comes for my mom, I’ll have the piece of paper, I’ll have the healthcare proxy which says I get to decide, but I think much more importantly, I’ll be armed as her advocate and have an idea of what’s right to do for her. And I think that is a gift we give to people we care about: to our patients and to our families. If you have that talk at a time when everyone’s relatively healthy, before the crisis comes, then it truly is a gift.

Let me close with the last line of a review of the book done by the American Bar Association because it’s the way I know the Cruzan family likes to think about their story: “In the end, Long Goodbye leaves the reader with the hope and the belief that this path cleared once is made forevermore welcoming for the rest of us who are all traveling their way”.