Death and Dying
Speakers: Dr. Robert Potter (click here for biography)
Soap Summit 4

Transcript of Proceedings
October 9, 1999

SONNY FOX: Unlike other societies around the world, death has always seemed to Americans a defeat. Certainly, to the medical profession, it has always been seen it as a defeat. Death is a separation from life. Death is uncomfortable in all its aspects, as well as sorrowful and tragic. What we thought we would do is to examine, not the person dying, but how the people around that person, the family and friends, should be dealing with death in a way that incorporates it into the process of life. We have two remarkable gentlemen who will make the presentation this morning and again we'll follow up with a breakout session this afternoon.

Dr. Lyman Potter has practiced medicine in Kansas City for the last 30 years with an emphasis on long term care. He graduated at the University of Kansas School of Medicine, and he is an Associate Clinical Professor of Medicine for the University of Kansas School of Medicine. He also has a Ph.D. in the area of religious and psychological studies, so if you're psychosomatic, he can deal with you either way. He's also, and this is most important to me, been a clinical ethics scholar for the Midwest Bioethics Center, and for the last five years, in project design to analyze and resolve problematic issues in Bioethics. Dr. Robert Lyman Potter.

DR. ROBERT POTTER: What I really want to talk to you about is the Last Acts Campaign. The Last Acts Campaign of the Robert Wood Johnson Foundation, is a national coalition to improve care and caring at the end of life. One of the major strategies of the Last Acts Campaign is to engage the more singular, hierarchical top dog powerful organizations in the country. Work top down, and bottom up, so the AMA is enlisted, and The American Hospital Association is enlisted in the coalition. The American Association for Retired Persons is in the coalition along with two or 300 other important organizations around the country. And so what is the problem they have to deal with? Well the problem is they never been dealing with death all that well. I'm reminded that in the previous century we didn't need a doctor to deliver you into the world. But a doctor was usually there to deliver you out. And in this century it's been reversed. The doc seems to be necessary to bring you in, and we've given social permission to withdraw when you're ready to leave.

So I want to tell you about what I perceive as a physician who's practiced for 30 years, and been engaged in teaching and dealing with Bioethics. In this century we have become incredibly powerful in dealing with disease. I mean just think of all the changes that have happened in this century dealing with disease. On the other hand, we're not dealing so well with illness. Which is the way you all experience disease.

Disease has really moved ahead rapidly hasn't it? I just think of all the technological advances that have occurred in my lifetime. I was born in 1938 in the second story of a house on 11690 Memorial Street. I thought you'd like the details. You know if you're gonna write the story, you wanna get them in there.

During a snowstorm at 2:00 in the morning. Now I lived in central Illinois during the war years while my father was a conveyor, manufacturing field supervisor, moved all around the country changing the automotive industry from military, up from civilian to military production. That's how my mother and her three siblings were all down in Pike County Illinois where it's really kind of back woods. But in 1944 sulfa came on the market. It was the first effective antibiotic. An old doc thought that little Robert ought to have some of that sulfa for his strep throat. Now the pills were about as big as your thumb. I knew as a boy of six, not to put that in my mouth. They were real soft though, my mother could crush them up and mix them with raspberry jam and coax it down me, and to this day raspberry jam tastes like sulfa to me.

Well, old Doc Uhoff gave me too much sulfa. Now it wasn't old Doc Uhoff's fault. I mean nobody knew how much sulfa to give, but he gave me enough sulfa at one time that it injured my kidneys, and I woke up one morning and I peed pure blood. Now that was wonderful for a boy of six. To have his urine turn blood red is the trick of a magician, and I wanted to be just like him, and that's why I'm a doctor today. But I didn't become doc. I went to school at KU in the years '60 to '64.

Things were beginning to happen. I was the guy, as a junior medical student, who sat with the farmer from Western Kansas all night long after his operation. The guy who had the first aortic valve transplant at KU. You can get those at Kmart now on a blue light special. They're just so common, aren't they? Technology was growing up so very, very rapidly. I didn't invent CPR but I helped perfect it. Because in 1964 the hospital that I worked with, which I was now an intern in, had the very first coronary care intensive care unit in the world. We had 10 beds, and each bed was like a little stall where you'd keep a horse, and they all had fancy rigs on them to monitor people. Back in the days when your oscilloscopes were about as big as a half dollar, and you would all go blind watching their EKG's running across there, thinking of all this stuff through. We thought we were at the height of technology. We could resuscitate 50 percent of the people's whose hearts went bad in that intensive care unit.

One night as an intern I resuscitated the Mayor of Kansas City, Kansas. I could see my name in headlines about three inches high the next day. Fifteen minutes later he died for good. Oh, everybody thought it was for good, they didn't like him all that well. We had technology down to where we had become technological wizards.

But there came into my life, when I was about 35, and now in practice three or four years after coming back from the Vietnam period, a 35 year old airplane pilot who had discovered a little lump under his skin, in the abdomen. Sure enough it would be cancer. And we didn't know where it had come from, or what to do with it. Buffaloed all of us there in Kansas City. We sent him down to Houston, to the MD Anderson Cancer Center, and they didn't know what to do with him either. They brought him back home, and he was in and out of the hospital a number of times going through the dying process. I remember one day he was in the hospital. I went flying down the hall with my white coat flapping behind me to go into his room to tell him his serum electrolytes were normal, or some inane thing like that, because I wasn't dealing with his dying. His wife Mary caught me at the door. Now Mary is what we would call down home, thick. Or my dad would have described her as an axe handle-and-a-half wide at the base, would have been the way he'd have put it. Mary grabbed me by the shoulders and threw me up against the wall. She said, Potter, you're going in there and tell my husband he's a dying man. "Yes, ma'am, will do." When we opened the door he was in the middle of a seizure from a hemorrhage in his brain from one of the cancer sites, and he was lost to us. He survived another two weeks, but was unable to talk, unable to hear, unable to be part of it. In some ways the rest of my practice life has been working out the demand of that day. As I tried to balance out being the technological wizard that I was trained to be, and the compassionate guide which I needed to become.

In this process of switching around to illness, what it seems to me the medical world needs, is to listen to the voice of the patient. Now as I was trained in '60 to '64 the ethics conversation was this hush discussion in the hall, should we tell her she has cancer or not? That's where we were at that time. Back in those days we were taught to be right all the time. I mean I was taught to be dogmatic. When I graduated I thought I was sort of top dog of dogmatics. I remember going in to examine a fellow and said, buddy your problem is your bowels are locked. He said, "But doc, I've had diarrhea for three weeks". "That's what I said they're locked open." Now if you're going to be dogmatic, you will have to have a few fast answers like that you see. But listen to the voice of the patient. The word patient needs rehabilitation. It comes from the Latin verb root, patio which means to suffer. The patient is the one who suffers. I get a lot of English words out of that, apathy, pathos, compassion, pathetic. You see where the word has infused our society. When we lost track of what patient means, the patient is the one who suffered. And if we join that fellowship of suffering, which is one phrase of Albert Schweitzer's, who's one of my heroes, if we join that fellowship of suffering, we need to listen to the voice of the patient. Now what are patients telling us about what they want at the end of life? As focus groups have been done around the country, what we're learning is that folks want to have their pain and other symptoms dealt with don't they? There ought to be an easier way to die. Secondly, they don't want medical technology to intrude upon the naturalness of their dying. Third, they want to die at home in the company of their family and loved ones. Fourth, they don't want to be a burden. They always say I don't want to be a burden, and what they mean is I don't want to be a financial burden. I don't want my dying to dry up the monies. Well when Robert Wood Johnson Foundation funded the support study, a major study including five academic centers around the country, almost 10,000 patients, what they discovered is that patients do have their dying intruded upon by medical technology.

They found that patients are not consistently brought to freedom from pain and dealing with other symptoms. They found that physicians and the care team don't know what the advance directives and the preferences of the patients often are. They discovered that 30 percent of people who died were financially ruined. Well, if we're not heeding the need, if we're not listening to the voice of the patient, what can we do? What ought we to do?

I would like to claim that what ought to be done is not solve a medical problem. Oh, yes, we'll take some responsibility for it as physicians. We'll take some responsibility for having abandoned the bedside of the dying. But this is a cultural issue, and cultural issues are what you all deal with best. A group of us in Kansas City have been working on this intensely. In fact, the Midwest Bioethics Center of which I'm a staff member, is one of the national program offices of the Robert Wood Johnson Foundation. We're dealing with a particular aspect of that having to do with state community partnerships and engaging citizens in dialogue, and dealing with legislators, and a number of other social factors in changing things.

But we have our own project. We call it The Pathways Project. 200 physicians in the Kansas City area will really work intensely on these matters. As one of our projects, we began to sort out what do you think we ought to promise to our patients who are dying?

And we came up with these five promises. We made up a little poster and plenty of us have had it around in our offices to kind of test it out to see whether the message flies.

When you are close to dying, as your doctor, I promise that I will tell you when I think you're dying. But I'll respectfully listen to your concerns. That I will help you create your care plan. That I will do my best to keep you free of pain. And I will talk to you about hospice care.

Those five promises are a response to listening to the voice of the patient. If we keep those five promises and we listen to the voice of the patient, what we will hear is thank you. Thank you.