When My Time Comes

by Diane Rehm

  D: Tell me then, what are the greatest flaws in the Oregon law as you see them?

  DR. T: We’re dichotomizing the worth of people. We’re saying some lives are not worth living. We actually think, as doctors, we’re helping the person out, doing something that in at least forty-one other states isn’t legal yet. And I’m doing my best to educate people that maybe this isn’t a good path to go down.

  We’ve had people who’ve had something to gain, who stood to gain the house and $90,000, and they’ve helped somebody to do this. And yes, there are people who are well-intentioned, good people, like my colleague Dr. Grube, but I’ve never asked a patient (and I doubt that David has either), “What’s your life insurance policy? Who’s the beneficiary? What ulterior motive might someone have?”

  One of my colleagues in this effort to stop the metastases of this paradigm is Margaret Dore, who is an elder-abuse lawyer in Seattle. She knows that one out of ten elders are abused, and this is not good. The ultimate act of elder abuse is to end the person’s life for some secondary gain. It might not even be money. It might be only that the patient is feeling like they’re a burden, which is one of the chief reasons why people do this. Their loved ones feel they’re a burden.

  D: As I understand from the research, Oregon has not reported problems with the elderly being coerced or any incidents of abuse—not only elder abuse, but of any individual being forced to take the medication. Indeed, we’ve been told that some one-third of those who receive the medication do not use it. I’d be interested in whether you believe those reports to be false. Or do you think abuse or coercion is simply not being reported?

  DR. T: Doctors are not present when the overdose is taken, 84 percent of the time, so all the reports are secondhand at best. I grant you that most people do not have bad intentions, but there are some who do. We also know that a study done by one of my colleagues at Oregon Health & Science University, Linda Ganzini, showed that, of the people receiving overdoses, 25 percent (because she was able to give formal psychiatric interviews) met the criteria for major depressive disorder, and 23 percent met the criteria for anxiety disorder. None were diagnosed with those problems by the physicians who gave them the overdose. She, being a neutral person, said that this may put people at risk.

  There’s never been an investigation of any of these assisted suicides in the state of Oregon, none. The head of the Oregon Health Authority that tracks the data was, for years, Dr. Katrina Hedberg, one of my former medical students who was also in practice with me. She said the department has neither the authorization nor the funding to investigate.

  I’ve had three or four dozen people talk to me about this subject in my practice. I don’t want to be pejorative toward doctors who disagree with me. But if I simply go with someone’s wishes, without having a dialogue—and I’m not saying that other doctors don’t always do this…but I can tell you, when 25 percent of the people in a study of some fifty or sixty people weren’t diagnosed with their underlying mental disorder by my colleagues, I obviously know that a lot of people aren’t asking the right questions.

  D.: Do any of your patients come to you saying, “I’ve had enough”? And how do you deal with that?

  DR. T: Sure. I’ve been taking care of a patient. She’s had a lot of disabling problems. She’s a very able-bodied person, but she’s had a lot of calamities in her life.

  She’s said this to me many times. Just this week, she’s feeling pretty despondent. I basically do what I did with other patients over the years. I mobilize. We’ve had to redouble our efforts to help this person to reflect on her worth. I’ve been through this with her many times, and never would I encourage her sense of “It’s hopeless, I don’t have any reason to live anymore,” something she’s said to me repeatedly.

  Because she happens to have me as a doctor, it’s changed the course of her treatment. I’m not speaking as a special person. I’m speaking as somebody who believes in the inherent value of all people’s lives, regardless of whether they’re distressed or despondent or feel they’re a burden. I want to make sure they know that they’re not a burden.

  D: What if a patient comes to you with what we call “intractable pain,” and you then refer them to a palliative-care specialist, and the palliative care does not seem to alleviate the pain? What do you do then?

  DR. T: To begin with, not having good pain relief is often touted as the reason for assisted suicide. Yet pain is not even in the top five reasons for wanting assisted suicide in the state of Oregon. It’s number six. It’s listed as “pain,” not “intractable pain.” It’s often the fear of pain. There are studies, Diane, that show that the more pain you have, the less interested in assisted suicide you are. I have yet to meet a patient with a late-stage terminal illness who has intractable pain.

  I have lots of patients with chronic pain who aren’t terminal and who have intractable pain, and who aren’t happy with the approach we’ve had for the last thirty years of giving people opioids and fentanyl. You see what a disaster that’s led to.

  In terms of those who are terminal, we can use pain medication without worry, because we can escalate the dose. I rarely have to refer to pain management for terminal patients. For my late wife, pushing morphine allowed her to relax. The data show that when you give a person morphine, you don’t make the person die more quickly. You allow the person to be at ease, relaxed, and they actually live longer. So, if you’re doing it with the intent to help the person, that’s great. And if a side effect is that they die more quickly, it’s okay. You weren’t trying to end their life. That wasn’t the goal. The goal was to relieve their suffering. When people feel that life isn’t worth living, we should give them the same love and care you gave your late husband, and live with them in the final days of life.

  D: It’s so interesting that you continue to use the phrase assisted suicide, while others who support medical aid in dying use different words.

  DR. T: Words are important. All social engineering is preceded by verbal engineering. In the King’s English, if you take an overdose, as a patient of mine did just a week ago, it’s suicide. I’m arguing against her misguided judgment at that time. I aid the dying as they are close to death. If we’re talking about death with dignity, my dad died with dignity. He was in the hospital when he passed away, surrounded by my brother and me, holding vigil.

  D: I want to go back to the woman you said tried to commit suicide. You called her judgment “misguided.” The issue may be: Whose judgment is it? Is it hers for herself, or is it yours as a doctor, in calling her judgment “misguided”?

  DR. T: Well, I say it’s misguided. And right now she would say it’s misguided. But at the time, she didn’t. People change their minds. As a doctor, by the way, I’m empowered. I have a power that’s not present in forty-one other states. That can be very dangerous. It’s an inherent conflict of interest. If we as a society want to do this, why not make it the responsibility of somebody who has some expertise in this? I had no training. Zero. In fact, one of my colleagues, who heads an oncology department in Salem, our capital, testified in public just weeks ago. He was proud of the fact that he was doing more assisted suicides in the state of Oregon than anybody else. He’s a medical oncologist, for heaven’s sakes. He’s a talented, gifted doctor. But he’s had no training in assisted suicide.

  He and his anesthesiology colleagues are trying to make a cocktail that can be injected. He was testifying because the law right now says the medication has to be ingested. They’re trying to change the word ingest to mean the medication could be injected or it could be given rectally.

  D: Otherwise, everything in Oregon is going swimmingly, right? There’s no slippery slope.

  DR. T: The Canadians know better, Diane. They studied our law and recognized that there were people who lived for hours after the overdose with agonal breathing. They knew it was not very efficient. The D
utch know this, too. Eighty percent of the deaths in the Netherlands are done by euthanasia, direct injection. So there are all but a handful of doctors injecting people, because if you want to end people’s lives, and I don’t, that’s the efficient way to do it, as with the death penalty. You give a tranquilizer to calm the person down, then you give a barbiturate, a sedative so they go to sleep, and then you give them a muscle-paralyzing agent, so they can’t breathe, their heart stops, and they’re dead. Now they even want to have doctors carrying a backup kit in case that doesn’t work. And they’re already doing it. There have already been six thousand people across Canada who’ve been euthanized. As of last year, there were only five people who had done it using the Oregon method, by taking an overdose. Because it’s not necessarily pretty.

  I recall the case of Lovelle Svart, which was featured in The Oregonian, a statewide newspaper. She had cancer, and for months she kept a video log, talking about how she was going to end her life. She finally got the medication, and in the video, she holds it up. Finally, in the last scene in her life, she’s having a party in her apartment. She’s surrounded by friends. I have a picture of her with a friend that I often show when I’m talking about this, and you can’t tell which of them is about to die. Because they’re all having a good time, and she’s really enjoying herself.

  Thirty minutes later, she’s in the bedroom. They don’t make a video of this, for reasons of taste, but they have audio. She’s being coached, not by a doctor, not by a nurse, but by someone who at the time was the executive director of so-called Compassion & Choices. And he’s saying, “You’re sure you want to do this, Lovelle?” She says, “I’d really rather go on dancing.”

  And he says, “You can.” And she says, “No, I’ve already taken the antiemetic,” which keeps you from vomiting the toxic bitter medication that’s going to kill her. “I’m going to go through with it.” And so she does. She starts drinking it.

  Her last words, or almost her last words, were “This is the most god-awful stuff I’ve ever tasted.” Then she asks, “How am I doing?” You don’t want to drink it too fast because you might vomit it. And you don’t want to drink it too slowly because you might fall asleep before you take a lethal dose. He says, “You’re doing fine,” like this is a clinical lab experiment. He’s totally dispassionate. And this is my point. Had she said that to me, I might have said something like “Lovelle, you’ve got a lot of life in you. Look at today, the party. You know, this is wrongheaded. I don’t think this is a good idea. We can always give you more antiemetic later. Lovelle, let’s think about this and do this later.”

  Now, this is not theoretical. One of my colleagues had a patient who had a cancer that was inoperable, a colorectal cancer. She’d gone to the surgeon, and he referred her to one of my colleagues at OHSU. She told him, “I’m not here for treatment. I’m not going to go through radiation and chemotherapy. I’m not going to have my hair fall out. I’m just here for the pills. I voted for assisted suicide Measure 16, which was the first initiative. I’m just here for the pills.”

  Instead of just going along with her wishes, my colleague said, “Tell me about that.” He found out she had a son who was in the police academy who wasn’t married. So he replied, “Don’t you want to see him graduate, don’t you want to see him get married?” She went home, thought about it, and the next week, she said, “You know, I think I do want the treatment.” So she goes through the treatment, radiation, and chemotherapy. Her hair falls out, but it grows back. She recognizes him in a restaurant five years later and says, “Doctor, you saved my life. Had you been one of the assisted-suicide doctors, I wouldn’t be here.” And she’s still alive, nineteen years later.

  D: I know you are a devout Roman Catholic.

  DR. T: Striving to be.

  D: How much does your religious belief motivate your thinking?

  DR. T: It’s in sync with my thinking. The motto, or the slogan, for our Physicians for Compassionate Care group says that we’re affirming an ethic that all human life is inherently valuable. I believe we can affirm people’s worth until they die naturally. I think we can keep them comfortable. That was the whole motivation of Dame Cicely Saunders in forming hospices, to allow people to live well until they die. That’s my goal in life. I want you, as a patient, to know that you don’t have to worry about my motives. I’m not going to do things to you, Diane, that you don’t want done. I’m not going to prolong life disproportionately. There’s a time when you have to say uncle. And I’m totally open to that. But I’m going to help you live well until you die naturally. You’re not going to suffer. If I can’t help you, I’ve got colleagues who can help you. I’ve never had a case in which somebody couldn’t get help, because we’re not dealing with chronic nonterminal pain. I want people who have disabilities—whether it’s speech, hearing, mobility—to realize that their life is worthwhile. Yes, my faith happens to be in sync with that. All human life is inherently valuable, I say.

  D: What about the situation that Brittany Maynard found herself in? She’s the young woman who moved from California to Oregon, who had a severe brain tumor that had metastasized, established residence, and lived here with her husband and mother. She was suffering from terrible problems, not only pain, but all kinds of difficulties. She tried everything. She finally said, “I’ve had enough.”

  DR. T: She was the poster child for the assisted-suicide movement. She was a twenty-nine-year-old otherwise healthy individual who had to go through a lot of things that were not going to be curative, just like the things my wife had to go through that weren’t curative. Had I been Brittany Maynard’s husband or doctor, I would have done exactly what I’ve been sharing with you. I would have shown her her worth, her need to work on palliative care.

  D: Dr. Toffler, suppose a patient with a terminal diagnosis came to you, not knowing about your belief that every life is inherently valuable, and asked you for a recommendation to a doctor who would help him or her with medical aid in dying. What would you say or do? Would you recommend another doctor?

  DR. T: There’s such a thing as active participation in something that is an inherent conflict of interest, and then there’s passive participation. Suppose you and I were blacksmiths back in 1850, and by the grace of God and the South, we understood the evil of slavery. If somebody comes to us with their slave and asks us, “Can you fix the shackles? He ran away and damaged his shackles,” we would say, because we have this insight about the inherent value of even slaves, “Sorry. I can’t help you with that.” He throws a rant and rage, and he’s cussing at us because we won’t help him. Then he says, “Okay, can you help me get to the next blacksmith? Where’s the nearest one?” So, Diane, are we going to help him? If you and I believe it’s misguided, are we going to compromise our integrity? Back then, we thought some people’s lives were inferior to others’, and we’re paying for that mistake to this day. I want to treat people equally.

  Diane, I don’t recommend this, but you have the power to end your life. It’s not rocket science. I know. I was a neurospace engineer. I’m not recommending this. I won’t even go so far as to tell you the simple, everyday thing you can find at a grocery store that costs less than ten dollars and would do it. When I hear somebody having these desperate thoughts, I don’t want to treat them differently because they’re labeled terminal by some other doctor who thinks they’re terminal.

  D: Now that Maine’s Death with Dignity Act has gone into effect, do you think we’re on a path to fifty states being willing to accept it?

  DR. T: No, I don’t. There are actually at least ten states that have strengthened their laws against assisted suicide. Barring the Supreme Court stepping in, as they did in Canada, I do not see all states embracing this. Maine Governor Janet Mills said, “I hope this isn’t used much.” Well, what can she possibly be thinking? It’s expanded in Oregon. There are well over 1,500 cases there, over 6,600
cases in Canada. It’s gone up threefold in the last fourteen years in the Netherlands. She’s not looking at facts.

  If it’s medical aid while dying, I’m in agreement with it. If it’s death with dignity, I’m in agreement with it. But we’re talking about empowering doctors to give massive doses or injections, as some of my colleagues want to do here in Oregon. They’re already doing it in Canada, the Netherlands, and Belgium, and it’s the identical treatment we give to serial killers on death row. Whether you believe in the death penalty or not, that’s not the point. The point is, if it’s supposedly cruel and unusual punishment, as some people say about the death penalty, how is it compassionate care when it’s a totally innocent person? You have to tie yourself into a pretzel to justify this. It’s exactly the same series of drugs.

  D: What would a good death be for you?

  DR. T: Surrounded by family, loved ones, supporting me with the amount of intervention and care that I desire. I used to think I would like to die on a racquetball court, and just have a quick, easy death.

  Allan Christopher Carmichael

  RETIRED ASSOCIATE DIRECTOR OF COLLECTIONS AND HORTICULTURE AT THE UC BOTANICAL GARDEN

  WIDOWER OF TERRY STEIN

  &

  Dr. Stephanie Marquet

  TERRY STEIN’S PALLIATIVE CARE PHYSICIAN

  As I walk up to the front door of Chris Carmichael’s home, it is clear that a gifted gardener has designed the entrance. There is a lovely “natural” garden, with flowers, ferns, and plantings one doesn’t ordinarily see on the East Coast. The doorway is beautifully surrounded by greenery and seems to welcome passersby to take a closer look. Later, we view the back garden, which has its own rare and breathtaking beauty.