Measure 16: Oregon Confronts Death and Dying; No. 1; The Role of the Doctor

When Oregonians voted to legalize assisted suicide last November, many in the health care industry were caught off guard. Medical professionals call Ballot Measure 16 "a wake up call". Surveys show doctors have wide ranging views on death and assisted suicide. The Oregon Medical Association could not reach a consensus on Measure 16. Although the initiative does not require doctors to participate in assisted suicide, it allows them to play a very different role than they're used to. Instead of preserving the patient's health, they may be asked to take an active step to end a patient's life. In the first of a series of stories on death and dying, Colin Fogarty explores some of the different views held by Oregon doctors. At Providence Hospital in Portland, Dr. Lee Dolan visits a patient... "Mr. Redwine? Good morning. How are you feeling?" [Mr. Redwine] "I'm feeling pretty good today" [Dr. Dolan] "All right." [Mr. Redwine] "I slept all day yesterday, and so I didn't sleep too much time 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. [Mr. Redwine] "I go through periods of time where my wife is just beginning to experience... "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 it 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 all right 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 have had previously, I almost thought you were going to say, I just want to say goodbye, you know, because-" [Mr. Redwine] "I was getting to that point again, Dan." [Dr. Dolan] "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. [Dr. Dolan] "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 when I'm gonna say, OK, 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, at Sacred Heart Hospital in Eugene, is one of them. He tells a story of one of his patients, a 57 year old woman who had cancer on her spine. Her view of life had deteriorated to the point where she decided to discontinue treatment, and to stop eating and drinking. Though he didn't like the decision, Maxwell says every patient has the option of refusing treatment. Four days later, the patient asked for a cheeseburger and denied ever wanting to end her life. [Dr. Maxwell] "I was pretty quick to sort of go along with it, you know, it's sort of like if it's a choice and it's legal. I suddenly realized I could have argued with her more. I could have put some obstacles in. If I had been in a position where my treatment was not just to sort of 'drug out' over a period of time, she wouldn't

have had a chance to change her mind. Made me wonder about people's resolve." Maxwell says the biggest problem when a patient faces an end-of-life decision is ambivalence. The doctors are ambivalent. You know, a dying patient is a failure, sort of ipso facto, and nurses are ambivalent. They're there to help people and they want people to get better. The families commonly are ambivalent, and so is the patient. "I want to die. I want to get this over with. And I don't want to die. And I don't want to- I want to keep on living." And so what this leads to is to a lot of craziness. [Fogarty] Maxwell says he was brought up in an era of paternalism, where the doctor filled the void of ambivalence and sometimes even makes the difficult decisions to protect the family. [Dr. Maxwell] "You have a maybe a wife who so distraught and so upset about their husband's impending death to go out and ask her for permission to discontinue a respirator, and make her an accomplice to make her wrestle with that agony on top of her grief, just seems unkind."

Maxwell says the best way to avoid an agonizing situation at someone's deathbed is to discuss end-of-life options well beforehand. But studies indicate that many doctors find it difficult to bring up the subject with their patients. [Dr. Tanner] "I've got two examining rooms here. This is a closet with with all kinds of samples." Dr. Joan Tanner, a family physician in Portland, does take the time to start the conversations with her patients. In Tanner's words, she "sees babies through grandpa", so she has the time and the background necessary to discuss end-of-life decisions. Tanner's approach to dying patients is the opposite of paternalism. "My feeling is that it is better whenever possible to lay out the options. And, let grown up competent people make their own decisions." Tanner says her patients often want her to make health decisions for them. She may suggest a course of action or say what she would do, but she always leaves

final decisions with her patient. Like Dr. Maxwell, Tanner says she's had elderly patients who refuse to eat. "They just aren't interested anymore. They're signing out, and you can offer them food, you can offer them, you know, I never say don't do it, don't give it to them. I always tell the nurse, offer it to them. If they want it, fine. If they don't want it and they will clamp their lips and shake their head and so on, leave them alone. You know, we can start IVs and keep them alive for how long and for what good. Because they're ready to go. If they're ready to go, who are we to argue?" Tanner says if Oregon's assisted suicide initiative is enacted, she'd be willing to prescribe a lethal dose of drugs for a dying patient, but only if she knew her patient well enough and was sure that he or she was not clinically depressed. [Dr. Tanner] "There's a difference between keeping life going and prolonging dying, and I don't think a doctor's function is to prolong dying."

Tanner prides herself on her staunch independence. More and more doctors have joined large health maintenance organizations or medical groups. In the midst of that trend, especially in the northwest where HMOs dominate the health care market, Tanner has maintained her private family practice. She refuses to become a salaried doctor within a large organization. In her words, when a doctor is on a salary, he or she can be told how high to jump and how frequently. The effort to cut costs, Tanner says, can often interfere with the doctor-patient relationship. Financial pressures may encourage doctors to see as many patients as possible. Efficient doctors may not spend enough time with their patients. [Dr. Tanner] "The alleged problem was this. But the real problem is something else. And you just don't have time for them. And they know the famous one, as you reach reach for the doorknob, they say, "by the way". And then that's the really important thing. Every doctor has that story. Where you have a situation where you've been "OK, OK, well,

good seeing again. We'll see you next time." Then they say, "by the way, I've been having chest pains." Yeah. Dr. Rick Kincade had a private family practice like Dr. Tanner's for 10 years before he joined the Eugene Clinic. The clinic has recently been taken over by Peace Health Systems, a Catholic HMO that owns clinics and hospitals throughout the Northwest. Dr. Kincade says he was frustrated by the financial responsibilities of private practice. [Dr. Kincade] "The reason I left was largely because of having to deal with the business of medicine, and having to be hard nosed when people didn't have money and you couldn't see them because they couldn't pay you." Kincade now works at the Urgent Care Center of the Eugene Clinic, treating minor medical emergencies. The job allows him to concentrate on patients. As a family doctor, Kincade has seen patients die, and he's often helped patients to be comfortable as their lives end.

Kincade sees his role not so much as a healer, but as a catalyst for the body's natural healing process. For him, that's a kind of noble role that legal doctor-assisted-suicide can diminish. [Dr. Kincade] "When you trust the physician to be totally dedicated to trying to help you to get better, as opposed and to fight off that natural aging death process, then it's a different relationship than when you are unsure as to whether or not the physician is simply assisting you in moving toward the death process more quickly. So it adds an element of doubt." Ideally, Kincade says, his role is to touch people. [Dr. Kincade] I think a doctor is a person that you can come to who'll actually listen to you. Which in our culture, again, is something that is not that's, you know, we don't listen to each other. We don't take the time.

Families don't take the time. I think the need for that concentrated attention is really increased." Many doctors can live up to that ideal, and many for various reasons, cannot. In the end, patients must take the initiative to find out how their own doctors measure up. For OPB, I'm Colin Fogarty. [New Interviewer] Mildred Solomon is a senior scientist at the Education Development Center in Newton, Massachusetts. She is also the co-founder of Decisions Near the End of Life, a group that is trying to improve comfort care for the dying. We spoke recently about areas that doctors and patients can work on to improve their communication, and decisions about death. In your research, what have you found about the the state of affairs in doctor-patient communication? How would you characterize that? [Solomon] We surveyed 1500 physicians and nurses in in five institutions across the country, and five hospitals, and three nursing homes and got

a large sample. And, found that nearly half the people we surveyed said that they'd acted against their conscience in providing care to the terminally ill. And, four times as many people were concerned about over-treatment that is inappropriate, overly-aggressive treatment, than were concerned about under-treatment near the end of life. Eighty percent said that the most common form of narcotic abuse in the care of the dying was under-treatment of pain. So, I see a lot of recognition on the part of the healthcare establishment, itself, that we could be doing a better job of making these kinds of decisions. [Interviewer] And one thing that struck me in reading some of the results of your research, is that doctors often use language, to a certain extent, to camouflage what they're really talking about. They use medical terminology to camouflage, what are in reality, quality of life judgments and conversations. [Solomon] Yes, exactly. Following that survey, we did in-depth interviews, and we asked doctors to talk about how they think through these problems, and, also, how

they talk about them. And, I guess if I were going to summarize the key finding there, it's just what you've said - that there's a real reluctance to talk about quality of life. We don't really know whether it's appropriate to talk about quality of life. Somehow it's suspect in our minds, that it's not kosher to talk about it. And, I don't think it's just doctors or nurses that are worried about that. I think in our society, as a whole, we're not really sure whether we can, say, 'have a conversation about what kind of life is worth living'. Which is really the terrain that you enter when you raise quality of life issues. And, so, as a result, doctors are reluctant to help patients figure out how the patient would assess the burdens and the benefits of continued treatment. And, what kind of life is acceptable to the patient. And, as a result, we get either silence - nobody talks about this, or we get very highly technical conversations about patients' blood gases or their, you know, all the technical medical

jargon. And we don't get recommendations from our physicians, or help in assessing what our own views are. [Interviewer] What are some of the factors that keep them from initiating or sustaining those kinds of positive conversations that really would help patients understand what's going on? [Solomon] Well, first of all, it's a tough conversation to have, for any of us. It's hard for us to talk to our own parents about their death, or to children, or to friends. And so, not all of this can be laid on the physician's doorstep. It's a tough human interaction to have. Also, there has to be - the clinician has to have the willingness to kind of sit through the discomfort, and to recognize that, in fact, they're not just causing discomfort, they're actually offering something positive. Patients and families want that kind of honest, direct conversation with their doctors, even if it's uncomfortable. And it has to be seen as a gift that we're giving when we're direct with people like

that. Direct, but kind. And yet, there has to come a certain willingness to live and sit with that discomfort. [Interviewer] So then to look at the other side of this equation, in terms of of patients and their families, all of us really are potential patients. What do we do to educate ourselves, and to promote having that kind of conversation with our own doctors? [Solomon] Well, for one thing, I think that each of us should initiate the conversation with the doctor, and it's kind of a "no, no, no...after you" sort- of-phenomenon going on here - that the doctor is sizing up the patient to see how much information do they want? "How direct should I be with this patient?" And the patient is saying, well, the doctor's holding back, or maybe there's nothing to tell me, because it's the doctor's job to tell me, and I'm not hearing anything. So, patients can make that conversation easier by making it very clear to their doctors that they do want all the information. That they do want to be a part of the decision making process - the key part, in fact. And, that they want to hear the pros

and the cons of different treatment alternatives. They should ask their doctors whether no treatment - no aggressive treatment that is, is an option. They should ask their doctors about adequate pain management. They should be frank about their concerns - what are they worried about and really insist on some participation in that. Another important thing to do, is to talk with our families. Let our families know what our values are. What kind of what sort of quality-of-life issues do I want to talk up through with my own family? What kind of life is worth living for me if I were in a long term coma, for example. What kind of treatment would I, or wouldn't I want? And also, to designate somebody who can speak for me if I no longer can speak for myself. There's another piece, I would add, and that is that I think there's the responsibility of family members to advocate for their loved ones when they're sick and near the end of life, if they're in pain.

There's a national problem here - that we're not adequately responding to people's pain. Millions of people are dying in pain, unnecessarily. And, each of us can protect our loved ones from that kind of an end by strongly advocating - calling the nurse, calling the doctor, and saying, "look, my loved one is in pain. They don't need to be." There's a lot of myths out there. There's a lot of reasons why we're not giving adequate pain management, and families need to become very assertive in demanding it. [Interviewer] Now, here in Oregon, the case of Measure 16, the measure that would legalize assisted suicide adds an intriguing element to this because it would really change the relationship between a doctor and a patient. And, that a patient could ask the doctor, forthrightly, for a prescription that would end their lives. Based on your experience, what is your view of how that would change the relationship of the doctor and the patient? Is that a desirable direction to push that relationship in? [Solomon] Well, I think the whole issue of legalizing assisted suicide is a very complicated one. I think there are important points that are made on both sides.

But, I personally come down to some very serious worries about legalizing assisted suicide. Here's my interpretation of it... I think that the public is calling for the legalization of assisted suicide as a cry for help. They're saying "you, health care establishment, have let us down. You're not providing for us appropriately near the end of life." And they're right about that. We are doing a poor job of providing terminal care and giving people the kind of support that they deserve to have a more peaceful, a more pain free, and a more dignified death. So I think the call for help is accurate, on the part of the public. But my worry is that we are jumping to a more extreme remedy for the problem, than we need to. The remedy is closer at hand. And, it's it's easier to implement and it has less dangerous consequences. And that remedy is, first of all, to provide adequate pain relief to people. The majority of these requests for assisted suicide, not all of them, but the vast majority, are from people who are afraid of dying in agony.

Nobody in 1995 and beyond, in the United States, needs to die in agony. Lots of physicians and nurses and the general public, are lumbering under the misconception that it's illegal to provide painkillers that might hasten death. In fact, it's not illegal to do that. If all other forms of relief have been tried and nothing's working - if the intention is to relieve suffering rather than to kill, and if the risks of providing adequate doses of painkillers are fully discussed and made clear to the patient, if you can still talk to the patient or to the patient's family, then it is legal. In fact, one would argue that it's morally imperative to provide enough painkillers to relieve that person's suffering, and to ensure that their death is peaceful. Even if it depresses respiration and hastens death. Even if we can anticipate that it will shorten life,

it's the appropriate, the moral, thing to do - and it's the legal thing to do. We don't have to legalize assisted suicide to make that a reality. We just have to recognize that it already is. We have to disseminate these laws more clearly. A second issue has to do with medical education. And, we are beginning to make some headway here. Right now, the attention that's given to death and dying, and how we support patients near the end of life - how we talk with them appropriately and also how we clinically manage pain, is woefully inadequate in most medical schools. It's just not a big part of the curriculum. There's also very few ways in which doctors in training can see older doctors, who might serve as mentors actually taking a positive approach to death and dying. Without going into the details of what the curriculum should include,

I think that the major point is to help physicians-in-training recognize that their responsibilities are not just to cure patients - that they don't measure their worth by the extra hours of life that they've given people. Only of course, to cure, is a major goal of medicine - but also to care for their patients. And so, a major theme of these reforms in medical education have to be to help doctors embrace a broader definition of their role, and to see that they have to be there to provide comfort and care. To be able to acknowledge that death and dying are a part of life, they're not medical failures. All of us will experience death. And that part of their job, as good doctors, are to be honest about that eventuality, and to stay by patients through it. [Interviewer] Well, thank you for speaking with us today. [Solomon] Thanks for inviting me. [Interviewer] Mildred Solomon is a senior scientist at the Education Development Center in Newton, Massachusetts; and the co-founder of Decisions Near the End of Life.

Harvard University Press is publishing her next book, Life and Death Decisions: How Physicians Handle Tough Cases. She spoke with us from the studios of WBUR in Boston.