On Death and Dying

Henry Hug

31 October 2004

First UU Church of Austin

4700 Grover Ave., Austin, TX 78756

www.austinuu.org

Listen to the sermon by clicking the play button.

Prayer

It is Halloween: the ancient time when we allow dark spirits to mingle with the light, that we might try to integrate them. All life is tinged with death, for every day we move toward that time when we shall not move at all. And so in our prayer this morning, let us acknowledge the deaths in our lives.

– Our own death. Whether it is imminent or, we hope, more distant, how do we incorporate our death as a fact of our life? What is this life like, that will end? What do we love, what do we serve, what is precious to us? What gifts do we bring? Since death must come to all, let it not stain life, but come as the inevitable ending to a life we are glad to have lived.

– The death of those we love, whether impending or past but still present in our hearts and minds. What was precious about them? What do we miss, what kind of hole do they leave in us and in the world? What sort of a gift were they, to us and to the world?

– Or the deaths of countless others, victims to wars, starvation or disease. What has their absence taken from our world? How much more complete would we have been, had they been able to flourish and bless the world with their unique gifts? What might be done to prevent the slaughter of war, and the devastation of starvation and disease?

– Or more abstractly, what of the death of dreams, and hope? What dreams have died? What hope has lost its foothold? Just name them.

Sometimes we care for ourselves and our souls simply by taking our fears and losses out of the shadows, naming them, and claiming them. May it happen for us here, this morning, now. So we pray. Amen.

HOMILY: On Death and Dying,

Henry Hug, M.D.

Thanatology is the study of death, from the Greek ‘thanatos’ meaning death and ‘logos’ study. Euthanasia means good death. How appropriate to cover this subject on el dia de los muertos.

For those of you who don’t know me, let me tell you a bit of my background. I am retired physician who practiced thoracic surgery in Michigan before moving to Austin, so you will get a physicians perspective of death.

I would like to cover three subjects. The first one is the death of the supreme thanatologist, Elizabeth Kubler Ross on August 24, 2004. The second is the case of Terri Schiavo, the Florida woman who is in persistent vegetative state and finally the Oregon Death with Dignity act.

Kubler Ross was born in Zurich, Switzerland, where she went to medical school and then came to this country in 1957 to train as a psychiatrist. She was appalled at the way hospitals handled death. She became interested in studying death when she saw her mother go through a long and painful final illness that lasted two years, and she went to England to view first hand how they comforted dying patients.

Thirty five years ago, in 1969 she wrote her first of thirteen books. It became an instant classic entitled ‘On Death and Dying’ Four years later when I bought her book, it was already in its tenth printing. I don’t know what printing you would be buying today, but I know that it is still in print and selling well.

In this book she described the five stages that people go through when they are given a fatal diagnosis and prognosis. They are: ‘Denial’ ‘The doctor must be wrong, I am not hurting anywhere, I will get a second opinion’ When the second and sometimes the third or fourth opinion confirm the original one, the patient moves on to the second stage: ‘Anger’ ‘Why me, what have I done to deserve this’ The third stage is ‘Bargaining’ ‘Dear Lord, if you spare me, I will do good works for you’. The fourth stage is ‘Depression’ when the patient can not sleep, loses appetite and show most or all of the symptoms of clinical depression. The fifth and final stage is ‘Acceptance’ where the patient is at peace with himself and with the world.

Not all patients go through all five stages, some remain in some early stage, others may retrogress before moving forward.

Did you know it is possible to go through all five stages in five minutes? Not when dealing with a fatal diagnosis, but imagine this scenario. You are driving along the expressway, there only a few cars on the road, or so you think, so you are driving at 80 miles per hour in a 60 mile per hour zone.

Suddenly you hear a siren and in the rear view mirror you see a police car with its lights flashing. Your first though is ‘It can not be me’ (Denial). When the police car remains at your tail you realize that it is you he is after, so your reaction is ‘Why me, there are other cars going just as fast, why didn’t he stop one of them’ (Anger). Then after the officer asks for your driver’s license and registration you try to plead with him. ‘I wasn’t going that fast officer, besides there so few cars on the road, I wasn’t putting anyone in danger’ (Bargaining). When the cop doesn’t buy your argument, you go into depression. ‘This is going to cost me over 100 dollars, now I can’t buy something nice for myself as I was planning’ (Depression). After the officer hands you a ticket and drives away, you finally have to admit to yourself, ‘I know I was driving 20 miles per hour over the limit. I will be more careful next time. I can’ afford another ticket’ (Acceptance).

Dr. Kubler Ross herself repeated her mother’s experience when she suffered the first of several strokes that left her paralyzed, in pain, unable to care for herself and dependent on others. In spite of her own experience and that of her mother, to the end she remained adamantly opposed to euthanasia or assisted suicide.

The second subject I would like to cover, is that of Terri Schiavo, the Florida woman who has been in persistent vegetative state for fourteen years. She originally suffered a cardiac arrest because of an electrolyte imbalance secondary to bulimia. She was resuscitated but not before she suffered extensive brain damage. Patients in persistent vegetative state differ from those in coma in that they do not appear to be asleep. Their eyes are open and they grimace which some interpret as them responding to verbal stimuli. I have seen patients in persistent vegetative state and they grimace and move their eyes even when there is no one in the room and are observed from a distance.

Her husband petitioned the court to have her feeding tube removed and let her die, based on the fact that in life she had frequently voiced that she did not want to live if ever in such a condition. Terri’s parents and sister hang to the futile belief that with some unconventional treatment she may recover some day and petitioned Florida governor, Jeb Bush, to have the tube reinserted. The busybody governor knowing he didn’t have the authority to order the reinsertion of the tube, asked the meddlesome legislature to pass a law that would allow him to give the order. In less than 24 hours, the two chambers of the legislature, hastily gave the governor the authority to have the tube reinserted.

Michael Schiavo challenged the law and Judge Douglas Baird agreed with him, ruling that the law was probably unconstitutional because it violated the separation of powers. An appellate court concurred and the case went to the Florida Supreme Court. A few weeks ago, the seven Supreme Court judges ‘two of whom were appointed by Governor Bush- unanimously declared that the law was unconstitutional because it reduced the courts to being a mere consulting body if the legislature could overrule a decision of the courts by passing a new law.

The lesson to be learned from this ordeal is that if you don’t have living will, you should not walk, you should run after this service to a table in the gallery where Daesene Willmann has the appropriate forms where you designate someone you trust to carry out your wishes. They are easy to fill out and only needs to be witnessed, not notarized, to make your wishes official. Incidentally in a living will your wish could be that you want to be kept alive as long as possible. The correct name of the so called living will is ‘Directive to Physicians and Surrogates’

The third and last subject I will be covering is Oregon’s ‘Right to Die’ law.

In 1994 the Oregon legislature passed a law that allowed a physician to prescribe a large amount of barbiturates to terminal patients who were expected to live less than six months. Governor Kitzhaber, signed the law which had multiple safeguard to prohibit abuse. Among them, the patient had to be a resident of Oregon for at least six months, to prevent an influx of patients from other states. The person had to have a patient ‘ doctor relation also for at least six months.

Two other physicians had to concur that the patient was indeed terminal with a life expectancy of less than six months and was capable of making rational decisions. Only then could the physician prescribe a large dose of barbiturates, enough to be fatal if ingested. The patient is then given instructions on how to proceed.

I have read that some patients chose not to take the fatal dose before dying, but died with the peace of mind that it was available if needed.

Within weeks of the governor signing the law attorneys from the National Right to Life petitioned United States District Court Judge Michael Hogan to review the case and declare it unconstitutional. The State of Oregon appealed the decision and the 9th US Circuit Court of Appeals ordered the reversal of Judge Hogan’s decision.

Judge Hogan made an end run around the reversal by allowing the National Right to Life to refile the lawsuit under different grounds. In 1995 Hogan once again ruled the law unconstitutional because it violated the equal protection clause of the US Constitution. Again the Appellate Court rebuked the rather week argument made by judge Hogan and the United States Supreme Court refused to hear the appeal.

In November of 1995 Oregon voters resoundingly reaffirmed the country’s only assisted suicide law. A few weeks later judge Hogan complied with the Appellate Court by dismissing the National Right to Life lawsuit but once again left the door open a crack by allowing once more to consider an amendment of the lawsuit and start the process anew.

Let me digress here. When I was in Michigan I had a patient who was a Circuit Court Judge and he told me that all judges rule with an eye of what the Court of Appeals may rule on their cases. If they are overruled, they will say: ‘The distinguished colleague erred’ but what they really mean is ‘You goofed dummy’.

Undeterred, the National Right to Life refiled the lawsuit in the case by claiming that their client suffers a so called ‘stigmatic injury’. Courts have recognized such an injury when a law stigmatizes a class of people. In this case they claim that terminally ill patients’ lives are less worthy than those healthy or in other words, terminally ill patients are being treated as second class citizens. The argument was very weak because it was applied when black jurors were excluded simply because they were black. In the assisted suicide law, it is the patients themselves who request the help and are not singled out by others.

With this in 1997 the Death With Dignity law, as it is now named, went into effect.

Not giving up the cause, now it is United States Attorney General John Ashcroft who is leading the charge against the law. The basis for his intervention is that it violates the Controlled Substances Act that require that controlled substances to be administered for a medical purpose and assisted suicide is not one.

Federal Judge Robert E. Jones upheld the Oregon law allowing physician assisted suicide, ruling that the Justice Department does not have the authority to overturn it.

In his Ruling Judge Jones criticized Attorney General Ashcroft for seeking to nullify the state law. Judge Jones ordered the federal government to halt any efforts to prosecute Oregon physicians, pharmacists and other health care providers who participate in assisted suicide of terminally ill patients under Oregon law.

Judge Jones further stated ‘To allow an attorney general ‘ an appointed executive whose tenure depends entirely on what administration occupies the White House ‘ to determine the legitimacy of a particular medical practice without a specific congressional grant on such authority would be unprecedented.’

‘We are digesting the opinion’ said Ashcroft at a news conference. ‘The opinion will be evaluated in the department and the course of action taken by the department will be determined upon our complete reading of the opinion and evaluation of the circumstances.’

It is now generally expected that the Justice Department will appeal the ruling by Judge Jones to Ninth U. S. Court of Appeals.

These are only a few examples of dealing with death where a few zealots try to impose their beliefs on others. Some European countries, starting with the Netherlands have passed assisted suicide laws that are accepted by the citizens but those opposed to it are not trying to overturn it.

Our biggest fear should be that these same zealots will try to amend the US Constitution as they are trying to do with same sex marriage and burning of the American flag.

Finally a reminder. Daesene Willmann is in the Gallery with the ‘Directive to Physicians and Surrogate’ forms for you to fill out.

HOMILY: On Death and Dying,

Davidson Loehr

It is Halloween, the ancient holiday when the spirits mingle with us, when the shadow side comes to light, when we are offered the chance to integrate parts of our conscious and unconscious worlds.

The things that remain in the shadows are different for liberals and conservatives. Conservatives stereotypically favor laws over leeway, favor top-down decisions rather than individual rights. Liberals tilt the other way.

So for conservatives today, I hope their preachers are asking them to look at the neglected role of individual freedom to override dictates from above.

But to do that here would be redundundant, especially on a subject like a patient’s right to die. If we took a poll, I suspect we would be overwhelmingly in favor of honoring a patient’s decision, no matter what.

For the record, I agree with everything Henry has said. I think the laws must honor our wishes, and allow us to make decisions, even mistakes regarding our own life. After all, we do it every day of our lives. We do it when we choose our diet, our exercise program or lack of it, when we drive too fast, or after having a drink or when we are angry. Each of these decisions could end our life, and we make them every day. So why not honor it when we make a more explicit decision to die?

It would be too easy to argue in favor of something we already believe in. So I want to honor the spirit of Halloween by bringing to the surface some facts from the shadows, some doubts we should entertain. Life is bigger and more complex than we can know, and we should leave room for ambiguity, doubt and humility when making life-and-death decisions.

As usual, I’ve brought you some stories.

The first is the heroic way we like to imagine these things happening, and they way they really did happen with a wonderful man who belonged to a church I served a decade ago. He was a retired Classics professor, about 85, and his name was Victor. Victor was a very opinionated man, without a lot of doubts about what he wanted. And, when he was admitted to the hospital dying of several things ‘ though mostly, as he told me, of old age ‘ he filled out his patient’s rights form immediately, making it clear that he wanted no heroic measures, and did not want to be resuscitated.

But the word didn’t get passed to the night shift. So when Victor went into cardiac arrest in the middle of the night, they called in the team that put the electric paddles on his chest and gave him a terrific jolt of electricity to jump-start his heart, which it did. Victor’s eyes opened wide, he looked straight at the man who had held the paddles, and said very sternly ‘Don’t do that again!’ They didn’t, and those were his last words: he died a few minutes later.

I love that story, partly because it was so true to Victor’s wonderful spirit, and partly because I wish all such stories were so clear and unambiguous.

But they are not.

I know some of you read the story published in the New York Times on October 5th, with the title ‘On a Matter of Life or Death, a Patient Is Overruled,’ by a Dr. Sandeep Jauhar. A man in his mid-50s had had a heart attack and developed complications. His mind was sound, and he had told the medical staff that he was never under any conditions to be intubated ‘ to have a large oxygen tube put down into his lungs. Then he developed a condition where he either had to be intubated or he would die. He still refused, the medical staff overpowered him and put the oxygen tube into his lungs. After a few weeks of more complications, he finally stabilized, the tube was taken out and he was on the road to recovery. Once the tube was out, the doctor who had ordered the patient’s wishes overruled visited him, and said he was the one who had ordered the patient held down so the oxygen tube could be put in to save his life. ‘I know,’ said the patient. Then he added ‘Thank you.’

So the patient’s advance decision was not the same as his decision when his life had been saved and he was on the way to recovery. Yes, there are cases where the doctors overrule patients where we think the patients would hate it, then or later. But this is one where the patient acknowledged that even he had not be capable of making the decision he was now glad the doctors had made in spite of him.

Twenty years ago while I was writing my dissertation and working as a staff chaplain in downtown Chicago, I was part of a much more dramatic story. It was one of only two cases where it was the medical staff rather than the patient who called for the chaplain. It was an amazing story.

Mr. Robbins was 62, and had been told he was at risk for a stroke. On Friday night, he phoned Carol, his favorite daughter in California for their weekly chat. During that chat, he suddenly became very serious, and said that if he ever had a massive stroke, he would absolutely not want to live for one minute, and insisted that she promise she would honor those wishes.

She agreed.

The next morning, he had that stroke. He was completely paralyzed and I was told that he could not speak or communicate. Carol flew to Chicago, and by the time I got to the unit on Monday afternoon, she had already ordered all life-saving measures stopped. The doctors said that time heals some things even after a severe stroke, and that she needed to wait at least several months before ordering them to kill him, as they put it.

Carol pointed out that this was the least ambiguous case they could imagine, since she knew precisely what her father wanted done now. The fight with the medical staff continued for nearly a week, during which time they did sneak him services which she had forbidden. One by one, she discovered the heroic measures they were taking, and ordered them all stopped, including feeding him through a tube.

The chief resident was nearly hysterical, saying this was nothing less than the murder of a man who would undoubtedly recover some, maybe much, of his lost faculties. But Carol had a certainty about her father’s precise wishes that few of us will ever have.

It was during one of these heated confrontations ‘ almost all carried on by the bed, as though the patient were deaf as well as paralyzed ‘ that a nurse’s aide from the night shift who happened to be pulling a double shift that day spoke up. ‘Why don’t you ask him what he wants?’ she said. You could have heard a pin drop. When the doctor explained that he was paralyzed and incapable of communicating, she told us that she had worked out a signal system at night where he wiggled the tip of his little finger to answer Yes or No.

The medical staff quickly and wisely worked up a list of test questions, to make sure he was aware and really communicating, and about eight of us gathered around his bed for an interview I will never forget. They tried to trip him up by asking trick questions, like whether he had had a heart attack (he said No), or phoned his son (No), or if he was in California (No). Each time, his finger-wiggling showed us he was fully present and fully aware of his situation.

They asked if he had told his daughter Carol that he would not want to live for one minute if he had a massive paralyzing stroke, and he said Yes. They asked if he knew that he had, in fact, had that stroke, and he said Yes. They asked if he wanted to die, and he said No. He said No.

Because of the fluke of a nurse’s aide working two shifts who had taken the trouble to learn how to communicate with him, he was able to change his mind and choose the very life he had been sure, a week earlier, that he would not want for one minute.

When we create fights between a family’s wishes and the advice of doctors, we run the risk that doctors’ decisions may be mechanical and uncaring, and that family decisions may be caring but dangerously uninformed. In both these cases, the patient himself was not qualified to see the decision he would really want made. They judged their future as hopeless based on an inaccurate understanding, and when their decision was overruled, or when they had the chance to reverse it, they were thankful to be able to do so.

Forty years ago, my grandmother died. The doctors wanted to put her into a nursing home where she would receive professional medical care, and said she could expect to live for at least another nine months. She wanted to stay home and be cared for by her husband of sixty years, but they said without professional care, she would probably not live more than three months. ‘I choose,’ she told them, ‘to have three months of loving care rather than nine months of professional care. She stayed home, and died about three months later.

In life, we hope for more than just blind obedience by those who love us. We certainly don’t get blind obedience from them while we’re alive! We hope they will care for us intelligently. And we trust those closest to us to use their own judgment in caring for us, even when it contradicts our own. We can’t dictate to our most intelligent and caring friends when we’re alive, and we shouldn’t try to dictate to them over our dying.

I think it’s the most we can hope for in death and dying, as well. My own family is very small: I have just one brother. But if he were to make decisions about my life, I would want him to remember my dignity, remember what a gift life is, and remember that he loved me. And I would respect any decision that came from those memories, whether it would have been my decision or not.

And if I were charged with making those decisions for him, I would try to do it in the same way. And if my loving and informed decisions disagreed with his, I would forgive myself in advance ‘ as I know he would forgive me ‘ for caring for him in the way I thought best.

I hope we will have the kind of laws that Henry also hopes we will have. But within those laws, I hope to receive decisions that come from an informed caring ‘ even if they are different decisions than I would have made. I know some of you will disagree with this, so I invite you to think about what you would hope to receive, and to give.

It is Halloween, when spirits from the shadows join sunnier spirits. We welcome this uncomfortable mixture, for we know that the integration of both the sunny and shadowy spirits will make us more whole, and do honor to our participation in this amazing gift of life.