Measure 16: Oregon Confronts Death and Dying; Series Summary

In November 1994, Oregon voters approved an initiative that legalized doctor-assisted suicide. It made the state the first in the world to allow doctors to prescribe a lethal dose of drugs to a patient who requested it. Within a month, a federal judge prevented the law from taking effect. But the election and accompanying debate has sparked a quiet revolution in Oregon, from the way doctors treat patients facing end of life decisions, to a greater awareness among the general public of the options and decisions associated with death. Oregon Public Broadcasting's radio news department decided to explore the health care and social issues surrounding doctor-assisted suicide in a year-long effort during 1995. The result is a six-part series reported by Colin Fogarty, which began airing in August. Part one focused on the range of opinion among Oregon doctors on the issue of assisting their patients to commit suicide. At Providence Hospital in Portland, Dr. Lee Dolan visits a patient. [people chatting in background] Mr. "?Redwine?" Good morning. How are you feeling?

I'm feeling pretty good today. All right. I slept all day yesterday and so I didn't sleep too much last night. Frank Redwine is 76 years-old. A retired insurance agent whose heart muscle is becoming weaker and weaker. He has congestive heart failure. At home, Redwine keeps a gun at his bedside in case his life becomes unbearable. I go through periods of time, my wife is just beginning to experience this, well, how do you feel this morning? I don't feel good. Why don't you feel good. I just don't feel good. And I think that's about as close as you can come to. And this can go on for days and days and days. For the past four years, Redwine's condition has steadily deteriorated. Today, he feels alright and tells the doctor he wants to go home. Dr. Dolan speaks to Redwine about his illness in a matter-of-fact tone. When you when you called up, you know, the other the other day and you said you weren't feeling good, I didn't know what you were going to tell me. You know, after some of the conversations we had had previously, I almost thought you

were going to say, I just want to say goodbye, you know, because -- I was getting to that point again. And then and the other thing is, when we've talked in the office, you know, you had a big workup the last time you were in the hospital. And I guess, you know, the feeling is -- even Dr. Peterson feels this -- I mean, there isn't, you know, there isn't a whole bunch, a whole bunch we can do. I mean, we haven't got any miracles for you. With patients like Frank Redwine, Dolan says his role is unclear. No one taught him how to deal with situations like this. So Dolan often tries to convince Redwine that life is worth living. It's his decision. I guess what it really comes down to, I don't feel bad about trying to encourage him to think positively about his life. But on the other hand, when he says, Dr. Dolan, you're a nice guy, I know you're trying to help me, but this is crap the way I'm living. I've had it; just leave me alone. And-and, you know, I don't want anything more done. I'm gonna-I'm gonna have tears in my eyes. I'm gonna say, okay, Mr. Redwine, if that's the way you feel.

Dr. Dolan presided over the Oregon Medical Association's debate on Measure 16, during last year's election. Though most called the debate cordial, Oregon doctors were split on the issue. Dolan supports Measure 16, but other doctors have strong ethical objections to legalizing assisted suicide. Dr. Winston Maxwell... [fades] Part two of our series dealt with an unusual situation in Oregon's Lane County. A majority of voters there approved of the initiative to legalize doctor-assisted suicide. But a health maintenance organization operated by the Catholic Church, which opposes the practice on moral grounds, controls virtually all of the medical facilities in the county. It's time for Catholic health care, or those Catholics who are in health care, to return to providing religious services rather than trying to provide something that is a social service. Frances Kissling is president of the Washington, D.C.- based group Catholics for a Free Choice. The group calls for the liberalization of the church, particularly in health care issues. Kissling says Catholic orders which run hospitals should return

to religious ministry, just as fire-fighting monks did in the Middle Ages when that industry was professionalized. Kissling says when a hospital like Sacred Heart controls such a big portion of health care in a community, the diversity of views within that community is lost. In her words, health care is still seen through the lens of the church, even though its members are a minority in the community. Kissling says a bishop has ultimate power to dictate what does and does not occur in a hospital within his diocese. And if he chooses to exercise an arbitrary and conservative control or if he chooses to make these issues, the controversial issues, a hallmark of his-his term as bishop. Then the hospitals have to toe the line. If he chooses to look the other way, the hospitals tend to be liberal. The result is that the consumer has no idea from day to day and from bishop to bishop, what will be available and what will not be

available. Kissling points to the U.S. bishop's ethical and religious directives for Catholic health care services. The bishop's directives, reaffirmed in November of 1994, placed strict bans on many types of contraceptives and on some medical procedures. The bishops advocate comfort care and advance directives for dying patients, but they say Catholic hospitals will not honor an advance directive contrary to church doctrine. Sister "Barbara ?haas?" says Sacred Heart likes to think it follows the spirit of the directives rather than the letter of the law. She stresses that the archbishop of the Portland diocese, which encompasses all of western Oregon, has no legal or financial responsibility over Sacred Heart. He does have a pastoral responsibility, meaning he is the shepherd of the flock in the biblical terminology, and therefore needs to be concerned that we would not be giving scandal, that we would not be misleading people, whatever.

But I think the directives cover a very small, tiny portion of what a hospital does and what a hospital is all about. But one medical procedure... [fades] This story was accompanied by an interview with Oregon State University philosophy professor Courtney Campbell. He explored the tension between the Catholic Church and its members when an issue like abortion or assisted suicide pits clergy against lay members. One member of the campaign in favor of legalizing doctor-assisted suicide was Michael "?Vernon?", a man who had been diagnosed with the virus that causes AIDS. Part three of our series, which aired following Vernon's death in September, gave him the chance to express in his own words what the battle meant to him. On December 7th, Federal District Court Judge Michael Hogan imposed a temporary restraining order that blocked Measure 16 from taking effect. Vernon was interviewed on OPB radio one week later. Whose life is it anyway? Does it belong to the federal government? I don't think so. It's never belonged to the federal government before.

Why would I want to do that now? Certainly doesn't belong in the hands of my doctor, because, you know, my life has always been my own and I've always made my own decisions. I certainly wouldn't leave those final decisions up to a doctor or the federal government. As Vernon's health deteriorated, he gave notice to the families of the elderly clients living in his home that he wasn't going to be able to take care of them for much longer. As he met with one of the families one day, he got dizzy and soon had to be taken to the hospital. There, he learned that the AIDS virus had penetrated his blood brain barrier that accounted for his dizzy spells and hallucinations. Vernon's doctors worried about a possible infection in his permanent I.V. While he was at the hospital, he described how he was feeling. Weak. Uh, weak. Tired. I don't know, I don't know how to explain it. I'm wondering, you know, how close

the end is. Vernon went home from the hospital at the beginning of September. Two weeks later, he called to say if there was going to be another interview, it had better happen soon. We talked for the last time on September 20th. And I'm starting to, uh, pass green feces . . . which is not a good sign. I know the green feces sign. So I would imagine that it's probably not more than a couple of days. Vernon said he wasn't looking forward to death, but he had accepted it. He was happy to have his mother and father in the house taking care of him. It's very nice. It's very reminiscent back to the days of my childhood, when if I vomited, my mother was always there to put her hand on my forehead. And she does that again sometimes.

Um, it's been very nice. In the final days of his life, Vernon hoped the tenor of the assisted suicide debate would tone down and that both sides of the issue would discuss it productively. He said his priorities had changed. Maybe this is part of the process of shedding, uh shedding this stuff, but none of it's important anymore. So I won't get the house painted and I won't get the sidewalk laid. So what? It'll be somebody else's problem. Let them deal with it. Vernon said he'd like to die naturally. I would rather go on my own, but if the time comes when the pain is so great that I feel the need to do that, I'm certainly prepared. Throughout... [fades] Following this story, we spoke with an emergency room doctor and author who's written about his experiences with patients and their families as they confront end-of-life decisions.

As the legal battle over Oregon's assisted suicide initiative moved upward through the federal court system, part four of the series introduced the author of the initiative, Cheryl Smith. We know from the books that are coming out, from the newspaper accounts that are coming out, that people are already assisting each other and they're ending their own lives and they don't necessarily know how to do so. And so I think it's really important that this kind of information be brought to the public eye, that it be looked at. For one, we can find out what kinds of people want to end their lives early and perhaps come up with some other interventions that will alleviate that need. Right-to- die advocates compare illegal assisted suicide to illegal abortion. They argue that when abortion is outlawed, women who have the procedure often risk botched attempts. Measure 16, Smith says, regulates assisted suicide as a medical procedure, much the way abortion is. In the Netherlands,

no one regulates assisted suicide, which is nominally illegal because there's strong societal support for aid in dying. The courts there are reluctant to prosecute doctors who help people die. Many supporters of assisted suicide in this country think physicians in Holland have too much freedom. And some medical professionals in the Netherlands agree and are beginning to adopt rules similar to Measure Sixteen's. Cheryl Smith believes that without regulation, there's a greater danger of failed assisted suicide attempts and unjustified euthanasia. I think that there ought to be some societal consensus and that we're working towards reaching consensus on this issue rather than have "back alley euthanasia," as it's been called, that we bring it to the front and we deal with it as a real issue. Because...[fades] This story was accompanied by an interview with a law professor at the University of Oregon, who explained the challenges judges face as they consider a law such as

this one without precedent in the American legal system. Our series continued with a focus on advances in comfort care and pain management, two medical specialties that have a tremendous interest in patient care at the end of life. What happened is this argument, which is very much the tip of the iceberg, is starting at the wrong end of the issue. I think Oregon ought to say, how do we want to care for our dying? I think the state in it and as a community should really begin to address, well, what is good for this community? What should be the rights of individual patients for access to care? Since the passage of Oregon's assisted suicide law, hospitals around the state have heeded that advice and paid more attention to comfort care. And in the last legislative session, Oregon lawmakers loosened regulations of pain medication. Soon after last year's election. Oregon Health Sciences University in Portland began a comfort-care team made up of doctors, nurses, social workers and a chaplain. I don't know the answer to that issue.

I don't think it should not... [muffled, fades] The Interdisciplinary Group meets to discuss options for patients searching for the best approach to a dying patient's care. My name is Cheryl Blackwell and I'm in the hospital with AIDS and a inflamed hip. The hospital's comfort-care team has helped Cheryl Blackwell's doctor prescribe the right kind and the right amount of pain medication for her. It's a throbbing pain and it's just in the groin area there, and it goes all all around the outside of the hip, and it's very-it does get at times very painful where I get into a fetal position and not even be able to move. And until I get like some Demerol or some kind of medicine in me that will carry out and take that pain away, then, you know, I have to just wait with it. Dr. "Paul ?Bascome?" heads the comfort care team. Bascome and the team's

nursing specialist, "Laurie ?Andreas?", check on Blackwell. [muffled talking]. She now has a morphine drip, which she controls. With the onset of even a hint of pain, Blackwell just hits a button and the pain goes away. But Bascom says her first night in the hospital was not so smooth, and the nurse kind of misread the order and the doctor thought she could get every hour and the nurse thought it was every two hours. And here she's been in pain for a month and now she's in the hospital and things went out of control and and she's fighting with the nurse over whether or not she can get she get pain medication. So we change "?that part?" on this thing that she controls herself, and within a day, you know, she could hit it as often as she needs and she really controls the pain. And the first minute she feels a little twinge of discomfort, she hits a button. She gets a little additional bit of morphine and her pain is very well controlled. So she can get to, I mean, can she get to the point where she feels no pain and yet is not, quote unquote 'snowed', but She's there now. Right now?

Right now... [fades] Comfort care advocates argue that the problem is not the medical community's inability to provide comfort care, but an appalling lack of knowledge about how to do it. Studies show that a significant number of doctors are unable to accurately gauge their patients pain level, and they often under-prescribed medication, leaving their patients unnecessarily suffering. Please welcome Doctor...[fades] Finally, part six explored the role of hospice care in the lives of individuals seeking a peaceful and dignified death. [muffled] causes many hospice nurses to oppose legalizing doctor-assisted suicide. If you hasten dying, they believe, you miss out on something important. The natural process of dying may look like to us is suffering, when actually it's the body just shutting down slowly, piece by piece. And that person probably isn't even cognizant of the fact that that those things are happening. They've withdrawn so far inside themselves that

they don't notice. S-so who's suffering? I think we are. [dogs barking] The pets of volunteers often roam through Hopewell House's sunlit halls. Before he became completely bedridden, Larry Jacobson liked to pet them, but his condition continued to erode. Gail Jacobson says the tumor in her father's mouth grew rapidly. In his final days, it filled his mouth. And although he says it doesn't hurt him, he gnaws on it until it erupts and he gets mouths full of blood out. And it's very terrifying to those of us who are around him. For a while...[fades] Gail Jacobson says she tried to talk to her father, read to him, play him tapes. But he's not interested in anything anymore. It's very short-term concentration span and has a difficult time

understanding what I'm trying to tell him. Not only is he suffering a lot and feeling a lot of discomfort, but we are suffering so much in looking at this disintegration before our very eyes. Despite Larry Jacobsen's long period of suffering, suicide was never an option for him or his family. Neither was hospice the perfect answer for the Jacobsen's. Morphine patches were no match for the many tumors caused by multiple myeloma, and nurses could do nothing to stop the swelling of the tumor in Jacobson's mouth. Choosing hospice did not make dying easy for Larry Jacobson and his family. It simply made it easier. For OPB, I'm Colin Fogarty. [exit music] [music playing in background] OPB Radio rebroadcast this entire series on consecutive days in December

and has generated numerous requests for tape copies of the entire series. Following are complete versions of the stories and the four interviews that accompanied parts one through four on OPB Radio's daily newsmagazine Oregon Considered.