When My Time Comes

by Diane Rehm

  Continuous deep sedation is legal in all states. The question really is, How could it be allowed and not medical aid in dying? And I have no answer. The major opponents to this are religious groups who believe that God put you on the earth and that God’s going to take you away. There are also disability groups that have somehow bought into the idea that they might be at risk, when, in fact, that’s never been shown to be the case in any state.

  STUDENT: I’m kind of confused about the reasons why people choose medical aid in dying. Financial issues are only three percent of the reasons cited. I’m concerned about how there would be a valid reason for someone to go through this process.

  DR. G: Maybe that has happened, but it’s never been something I’ve run into. Ninety-eight percent of people who choose aid in dying in the authorized states do have insurance. And our Medicaid, our state insurance, pays for it.

  STUDENT: Could you tell us about the medications that are actually used for this?

  DR. G: The rapid-acting barbiturates have been chosen—pentobarbital and secobarbital. Then pentobarbital was taken away from the U.S. because of some botched capital-punishment case. It’s produced in Denmark, and so we don’t have it. And then secobarbital was no longer available in the U.S. after January 1, 2019, and no one knows why. So doctors and pharmacists in authorized states have gotten together and come up with two protocols. One is a combination of diazepam (which is Valium), 1 gram; and digitalis, 50 milligrams, which is two thousand times the regular dose; 15 grams of morphine sulfate; and 2 grams of propranolol. That is very effective. It’s not as effective as secobarbital or the barbiturates, but it is effective. However, there have been some prolonged deaths with that protocol and particularly with ALS patients, who have really strong hearts when they’re thirty-six years old but can’t move their bodies and haven’t deteriorated physically like a ninety-year-old with lung cancer.

  The more up-to-date protocol is called DDMA. It’s 100 milligrams of digitalis, and then one half hour later, 1 gram of diazepam, 15 grams of morphine sulfate, and then instead of the propranolol, 8 grams of amitriptyline. That means the death occurs sooner. Rather than lasting an hour or two, it’s closer to twenty minutes. That’s probably the most commonly used protocol. The complications or the difficulties are that it has to be compounded, and in some places, such as rural Oregon, there aren’t compounding pharmacies, so you have to get it from Portland, and that’s another barrier and takes more time.

  STUDENT: So after a prescription is written and the patient has the medication in hand, what’s the process like? Do they set a date, or is it like a ceremony with Grandma and all the grandchildren and the dog?

  DR. G: First of all, after the prescription is written I think it’s important to tell patients not to fill it until they’re absolutely certain they’re going to want it. Leave the prescription at the pharmacy.

  It doesn’t cost them any money and it’s safe there. But what happens is all over the board. I’ll tell you a very interesting story about a woman who got the prescription. She was dying of cancer, and all of a sudden an experimental treatment came out, and she went to Seattle and got the experimental treatment and lived for four years. She had four really great years. And then the cancer came back and it was horrible. And then she took the medication.

  We try to counsel our patients never to take the medication alone, never to take it in a public place, and to tell your family about it. Sometimes family members don’t agree and won’t participate or get in the way or act out or whatever. But if this person is in hospice, then he or she has the support of the chaplain and the social worker and the nurse’s aide, and it’s much, much better.

  STUDENT: So if it’s self-prescribed and self-administered, how can you be sure the pill doesn’t fall into the wrong hands?

  DR. G: End-of-life patients have a gob of things at their bedside. They have a hospice rescue pack, they have their chemotherapy, their aspirin. All medicine is a poison. When you use the correct amount, it can be therapeutic, but it should be stored securely.

  STUDENT: We’re fortunate to have physicians like you providing this care for patients, but how can we empower other physicians to seek further training in this area, and also to have these important conversations with palliative-care patients?

  DR. G: Through education at an early age, in medical school. I teach in the medical school in Portland, and I always teach the first-year students like you if I can, because you have the most open minds about choices and options. Teaching about the difference between personal beliefs and professional integrity—that’s very important. We all have very deep and personal beliefs. But professional integrity means that while you take those into the exam room, there it’s about the patients. It’s not about you, and you need to respond to their concerns.

  I teach in hospices and medical programs, trying to get state medical associations to change, and now I think fourteen or fifteen different state medical associations, as well as the American Academy of Family Medicine, recently reversed their opposition. Now we’re working on the American Medical Association. The American Nurses Association is probably going to change their position on this. That’s huge because, being married to a nurse with more than forty years of experience, I know where the power lies in medicine. And thank heavens.

  STUDENT: Have you worked with other members of the medical team who don’t agree with this decision?

  DR. G: You never have to. In all states, in all systems, if this is something that you do not personally believe is correct, you can opt out. I’m on the board of directors of a hospice, and we have a policy that supports choice, but if a nurse does not want to participate, we make sure she or he is able to not participate and we have another nurse there instead. That’s true about pretty much all policies, and it’s very important.

  In regard to getting people to understand, I think one way is to state our advance directives, our living wills, and video-record them on our iPads or iPhones. It makes a big difference when you can show that to a loved one and say, “This is what Mom really wanted. See, when she wasn’t so sick, she said this.” I think that’s way better than just having it written down on a piece of paper.

  STUDENT: Since the patient has to be able to self-administer the medicine, do you often see patients grappling with the question of when is the right time to take it, because they don’t want to be so far down the road that they can’t take it on their own?

  DR. G: Yes, and particularly ALS patients and particularly with the swallowing. However, self-ingestion does not necessarily mean swallowing. It can mean even getting someone to mix up the medicine so that you can push it into your feeding tube. There’s also a thing called a Macy catheter—a rectal catheter—and with it medicine can be administered rectally.

  It’s really important to talk about the difference between administration and assisting. Assisting can mean mixing up the medicine, going to the store and getting the medicine, holding a cup while someone sucks out of a straw. That’s all fine, all legal. But the administering is not legal if you pour the medicine into the person’s mouth. But yes, particularly ALS patients get to that point and come up with creative ideas of how they might be able to take the medicine if they can’t use their arms.

  I’ve been talking longer than I should have been. I love talking to young people about this because if I just talk to old doctors, most of them would say they still don’t think it’s right, and maybe only a few would change their minds. I may not have changed anyone’s mind here, but I hope I gave you some information. I’m certainly excited about your future in medicine. You’re going to have a great career!

  Gizal Rachiti, Frankie Buruphee, Somia Monuputi, and Charlie Hartley

  FOUR STUDENTS WHO ATTENDED DR. GRUBE’S LECTURE

  DIANE: First, give me a sense of your takeaway from the lecture you just heard.
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  GIZAL: Coming into this, I was a little bit unsure of my position on the subject. I was raised Catholic. So it was always, choose life, anything to protect someone’s life, and that includes medical aid in dying. I was really moved by the lecture and all the stories Dr. Grube told about people’s dignity. My mother has ovarian cancer, and so if she were to choose that option, I would 100 percent support her, because it’s her decision; it’s every patient’s decision.

  FRANKIE: I came in thinking, it’s always a conflict, between how I was raised, my beliefs, and how I want to treat patients as a doctor. It’s always been my belief that patients have the right to make a choice, no matter what. Yet there’s always the inner monologue of: Is it the right thing to do? Listening to the lecture really swayed me in the direction of yes, this is the right thing to do, listening to patients is always the right thing to do, and they should have the autonomy to die as they please.

  SOMIA: I came in with an open mind, not knowing too much about the details, although it’s something that I had thought about before. I come from a Muslim background, and it’s a controversial issue there. But the point that it’s about suffering, about decreasing terminal suffering, and how well thought out this process is, and how many obstacles there are to make sure people are considering it fully—a lot of that was very persuasive.

  CHARLIE: I actually came in fully convinced that this is something a patient should have the right and ability to do. Both my parents dealt with the early loss of their parents. My dad lost his father at a very young age, and my mom lost her mother in her teens. Then her grandmother had ALS and dealt with the consequences of that late in life. I think it’s not within our purview as doctors to tell people how they should determine the end of their lives. And this procedure is something that has been shown to be effective and painless and to relieve people of the pressures they’re dealing with as they come to their time. It’s something they should be fully empowered to do.

  SOMIA: I spent a lot of time in college trying to understand death and dying in different cultures. One of the things I took away from the lecture today was that there’s a growing movement in the U.S., and I was excited to see that. I’ve spent time in the Netherlands, and I talked to a lot of people there about the consequences of assistance in dying. I think one of the challenges will be—and Dr. Grube briefly mentioned this—what we do with people who have cognitive decline. I’m hoping we’ll be able to make this available to patients who are undergoing that. This is going to be an interesting ethical and medical issue.

  FRANKIE: It seems from the way it was laid out that this is a very long process. It takes quite a while for a patient to be able to be approved for this. Some don’t get the approval. There are a lot of safeguards in place to make sure that people aren’t making the wrong decision.

  D: What was the most important thing Dr. Grube said to you about beginning a conversation with a patient, or with someone you love?

  GIZAL: My general impression was of an approach of respect and acknowledgment that this person is the one who’s experiencing illness and suffering. It’s not what I, as a family member or loved one, or physician, think. It’s what they think because it’s what they are experiencing. So we should be opening the conversation by wanting to listen and hear what the person is saying and not projecting our own judgments or beliefs onto that person.

  D: It used to be that a patient would say, “Well, whatever you say, Doctor.” Things have changed now, but would you want to accept that responsibility?

  SOMIA: I think one of the great things they’re teaching us in medical school, and which will hopefully be the norm going forward, is having more collaboration between the patient and physician in care planning. I would see it as my responsibility to inform patients as much as possible about their options. The really difficult question is when people ask you what you would do if you were in my position, and we haven’t gotten into a lot of the nitty-gritty of how we as physicians are supposed to respond to that. And that’s, again, injecting your personal beliefs into what should be done.

  But I think it is part of our responsibility, as part of the medical community, to have those conversations and be bold enough to raise the topic and then say, “This isn’t about me, This is about your journey, and you can ask me any questions you want, but this is not something I can decide for you.”

  Dr. William Toffler

  NATIONAL DIRECTOR, PHYSICIANS FOR COMPASSIONATE CARE; PROFESSOR EMERITUS, OREGON HEALTH & SCIENCE UNIVERSITY

  Dr. Toffler and I meet in his home in Portland, Oregon. He is tall, slender, and handsome, with short, curly gray hair. Dr. Toffler lost his wife to cancer about five years earlier. We are seated close together in his living room, which is filled with photographs of his wife and children. Before I begin recording our conversation, he mentions details about my life, about my late husband, my children, my background, my upbringing, even my dog Maxie, now deceased. He has clearly done a thorough background check of his interviewer.

  DR. TOFFLER: It’s a privilege and an honor to be with you, Diane.

  DIANE: Thank you. Please tell me about Physicians for Compassionate Care.

  DR. T: It’s an organization dedicated to giving the best of care at the end of life, and affirming the ethic that all human life is inherently valuable.

  D: Oregon’s right-to-die law has been in effect for twenty-two years now. Tell me your thinking about this law.

  DR. T: Well, first, the name of the law, the “right to die” or so-called death with dignity, is not what we’re talking about. Diane, you and I and everyone else are terminal. We don’t have a right to die, we are all going to die.

  What I’m trying to fight for is the right to life, in a state where we have adopted the model that some lives are less valuable than others. In Oregon, people are offered treatment under some conditions, but under other conditions, they’re not. And the state will deny coverage for people like Barbara Wagner, who was a school bus driver who had lung cancer. The cancer recurred. Her oncologist wanted to give her a drug called Tarceva. She wanted the drug, because, statistically, it would increase her chances of being alive in one year by 45 percent.

  She gets a letter from her health insurance, CareOregon, denying coverage for this drug, which she wanted and which the doctor wanted to give her. Yet they would pay 100 percent for her assisted suicide under the rubric “pain relief.” Talk about misnomers! She was indignant. What right do they have? They’ll pay her to die with dignity by suicide, or the lethal dose of medication, but they won’t pay for her to extend her life, which she wanted. She was robust. You wouldn’t be able to tell that she had cancer. Remarkably, the drug company offered her the drug for free, and would, if she did well for a year, actually continue to provide her with the drug. So it’s paradoxical that the drug companies seem to care more about extending her life than the state of Oregon. And this is what I’m worried about, this inherent conflict of interest, where we have money that could be spent on the living, and giving care to people, and that instead gets spent on the solution to suffering by taking an overdose of medication.

  I think people who believe in this paradigm are not bad people. My colleague Dr. David Grube is head of the so-called Compassion & Choices. We see the world differently. I believe the solution to suffering is to help the sufferer, to be with the sufferer, to be willing to suffer with the patient. That’s what I’ve dedicated my life to, over these last forty years as a doctor.

  D: Would you say that, from the outset, you did not support Oregon’s law?

  DR. T: Absolutely, I didn’t, I don’t. I think it’s a huge violation of the integrity of the patient. I use the analogy of a courtroom, Diane, and I’m your defense attorney. And then you’re a little puzzled when I walk across the aisle, and now I’m actually arguing the case against you, and it’s a capital case. This is where your life is potentially at risk. And if
you don’t think that’s a conflict of interest, for me to be on both sides of the fence, if you will, I’m also the judge who decides which lawyer is making the better argument. And if you’re still not bothered, I’m also the executioner who carries out your death sentence.

  Many people are not happy with the death penalty, because we might make a mistake. There’ve been lots of cases when exculpatory DNA evidence comes to light, and the person is gone. Doctors don’t have crystal-ball-reading courses in medical school, and we, too, are sometimes wrong. Every doctor has seen a case in which somebody lived longer than the doctor predicted.

  Even so, my late wife, Marlene, asked the doctor, “How much longer?” We both knew her cancer had spread. It started in her uterus, a leiomyosarcoma of the uterus. And then, it was found in her lungs. That was a death sentence, because there is no cure and it’s a relatively rare cancer. The doctor gave her his best professional estimate of three to nine months. We were blessed with four times that time. And that time was precious, as you know from your own experience. Every day is special. And because we see the decline, we know it’s not going to be forever, and it changes everything. I think we had only one argument in the last five years of her life, which was a very different amount of arguing from what we had in the previous thirty-five years of marriage. I wouldn’t trade a nanosecond of those last years with Marlene.

  You know, ending your life isn’t rocket science. Seventy thousand people take their lives every year. These are nonassisted suicides. The sad thing is that we as a medical profession are acting like vending machines. There are a million doctors in the country, Diane, and sadly they don’t all have the same reverence for life in all its stages.