by Diane Rehm
D: Deborah, do you know what your red line is?
DK: I think I do, but I suspect I don’t. When I think of the whole idea of chemotherapy and all I’ve gone through, and how I thought, No, I’m not going to do that, and all the times when I’m hooked up to this portable pump, the day after the steroids wear off (which give you a bit of a high), and all I’m left with is being hooked up to this pump I’m carrying around, there are times I think, This is just really crazy. But two or three days later, I’m back, handling a board meeting.
D: Debbie, when the time comes and you reach what you feel is the red line, how sure are you that you’ll use the medication when Lonny provides it?
DK: I am pretty certain I will. In part because, for the past few decades, I’ve had a very bad back and a lot of pain, and I know how much pain I can take and continue on. And if the time comes when there’s pain and discomfort and nobody’s benefiting from it, I’m not doing anything to raise a small child, I’m not doing anything for anybody else, I can’t think right now of any way where I’d say, “Yeah, I’ll take another few days of pain.” That’s not quality of life. I am pretty certain that before I get there, I will be in touch with Lonny.
D: And when you do receive that medication, do you know what it will be, and how you will take it?
DK: Lonny made that very clear. While I don’t know the chemical names, the first two drugs put you to sleep pretty quickly, and then there are the drugs that I have to take myself that will ultimately slow the action of the heart. Lonny even made clear this is not something that will necessarily happen in a matter of minutes, that some patients are a bit more resistant and may be alive longer than one might hope. But I feel 100 percent fully informed.
D: So if you do receive that medication, I gather you’d prefer to be alone? At least right now, that’s your thinking? In my own case, I think what I’d like to do is to have my family, my closest friends, and perhaps then go off to my bedroom. I would hope a physician would be there to guide me, perhaps my own daughter, who is a physician, plus my son, and my husband. But you think you’d rather be alone?
DK: Well, I think the first part, the predeparture party— It’s funny you mention that. There’s a wonderful episode on Grace and Frankie.
D: Wasn’t it wonderful?
DK: Absolutely wonderful episode, where she gave herself a wonderful going-away party. But I think that’s an unusual situation, where somebody would be that well and be able to have a fun party and then go upstairs. I have a feeling that I will not be that well at the point when I make the decision. As for whether I would want my family or friends around, I haven’t given it a lot of thought. A lot of my thinking is about how it would affect other people. I don’t think I would want to put my family in the position of being upstairs in the bedroom waiting to see when I stop breathing. I think that might be unpleasant for them. At the very end, I don’t think I want an audience.
D: Lonny, have all the people who’ve come to you been Caucasian?
DR. S: No. The smallest percentage have been African Americans, and I think probably rightly so, out of their distrust of the medical system. We’ve had a surprisingly significant higher percentage than I would have expected of Asians in our practice. And we’ve had a high, significant number of Latinos. But I think that access to good medical care—and I consider aid in dying to be access to good medical care—is still more available to privileged, educated white people. So we see the same skewing in our practice that you see in oncology practices, early mammograms, and vaccinations. We see that imbalance across the scale of medicine.
The common accusation is that this is just for rich white people. It’s for people who can get on a computer, find a doctor who will be cooperative and help them get what they want—and those tend to be the more affluent people who expect more privileges in all aspects of medicine, including ours. And yet, I’ve been surprised. Because we are in California, we don’t have a predominantly white population. We have quite a variety. I have to say that the shortage has been in African Americans. I don’t think the medical establishment has been good at building trust with the African American community.
D: Some opponents of medical aid in dying fear that there’s a slippery slope, that there could come a time when the disabled, perhaps the mentally challenged, might be taken against their will. How do you respond to that kind of concern, Lonny?
DR. S: I think we have to be a somewhat evidence-based society. And in twenty-two years of practice in Oregon, and now in California, in Washington, and in many other states, there haven’t been any documented cases of that type of abuse. Given their intensity, the opponents of the law would have pointed out “slippery-slope” transgressions by now, if there were any. We’ve stuck to the law, we’ve followed the law, we’ve worked with the types of patients for whom the laws were intended. And I think that if there’s argument about whether we will ever have this with patients with dementia, or with patients who are severely disabled, I think that those are valid questions. Society has to answer those questions. As of now, what we have is a law that says we work with terminally ill patients. We follow that law. I am very, very careful when I see, for example, a Parkinson’s patient who is severely disabled, but not yet terminal. I have to turn those patients down, although they make very intense requests, being ready to end their lives. This law does not apply to patients who are severely disabled; it applies to patients who are terminal. There are hard discussions, but we follow the law.
Dr. David Grube
NATIONAL MEDICAL DIRECTOR, COMPASSION & CHOICES
A Lecture to Second-Year Medical Students George Washington University, April 15, 2019
Our topic today is medical aid in dying. I give lectures about this topic all across the nation, but my favorite audience is medical students, and my favorite, favorite audience is first- and second-year medical students.
I practiced for thirty-five years in a little town in Oregon. In Oregon, we’ve had this law for almost twenty-two years, and here in D.C., you’ve had it for a little over a year. By the time you graduate from medical school, many states will have this option for choice at the end of life. And that’s why I think it’s important for you to learn about it.
The first thing to remember is that the annual mortality rate does not change. I think it’s important to remind ourselves that death is not the enemy—we’re all going to die. The enemy is terminal suffering, suffering at the very, very end of life.
There are now nine jurisdictions in the United States that allow medical aid in dying, and if you add up all the people who live in those places, that’s about one in five Americans who have aid in dying as an option at the end of their lives. Oregon was the first, and New Jersey just came on board.
Aid in dying essentially applies to an individual, your patient, who has to be an adult, has to be a resident of the state where you practice, has to have the capacity to understand what they’re doing. It’s not for people with dementia or people having difficulty understanding informed consent. They have to have volition. That means, it’s their choice. No one can choose for them. And they have to have a terminal diagnosis. That means, they have to have six months or fewer to live, such as a hospice patient, if you will.
And self-ingestion means that the patient takes the medicine himself or herself.
There are protections. Because it is a law, it is something that you, as a doctor (in a few years), cannot be sued for. Indeed, no doctor has ever been sued in the states where medical aid in dying is authorized. And there has never been any disciplinary action against a doctor. I sat on the Oregon Medical Board for many years, and each year we would look at cases, but we never took any disciplinary action if the doctor acted in good faith in accordance with the provisions of the law.
There are also important protections for the patient. If people choose this option, it doesn’t have any impact on the
ir life insurance policies or any other contracts they may have. If people choose this, their death certificate does not state the cause of death to be medical aid in dying; it states the disease that was responsible for the end of life, such as lung cancer, ALS, et cetera. There are two parts to a death certificate: the legal part, which is for your estate planning and so on, and the medical part, which is for epidemiology.
All the data about aid in dying are collected on forms a doctor fills out. This is an intimate and private experience. And most important, it does not constitute suicide, or euthanasia, or mercy killing, or homicide. I can say that to you clinically, but it’s in every state law as well. It can’t be called those things because it isn’t those things.
We’ve had this law for a long time in Oregon, and I think we’ve had some unexpected results. First of all, we didn’t realize that just having the conversation about aid in dying is palliative in and of itself. Many patients who are dying wanted to talk. And after we talked, they could have—but usually did not—choose it. They felt better knowing that I would listen to them. I would be available for them. I would not abandon them. I would not brush this off as a silly thought they were having. I would not question why they wanted to talk about it.
Another interesting thing is that most people do not choose aid in dying because of extreme pain. Everybody thinks, Well, gosh, they’re suffering because they’re in all this pain. No, their suffering is not necessarily pain. Their suffering may be anhedonia—lack of joy or lack of pleasure, loss of autonomy, loss of dignity, when you have to have someone else clean you up every day, you can’t take care of yourself, or you’re incontinent. Pain comes in about fifth or sixth on a list of reasons people give for wanting aid in dying.
And, very importantly, this is not something that people have taken advantage of. Minority groups, the disabled, the poor, are not people who are ever coerced into this. That just doesn’t happen. Some of the people opposed to medical aid in dying say, “Well, this is going to be against the disabled.” Absolutely not, and that’s not the case in any state, including Oregon. It’s about people who are about to die. They may or may not have a disability, but it’s not about their disability, it’s about their coming death.
It’s important for you to know that of the people who go through the process, only two-thirds of them end of up taking the medication. Fully a third who have a prescription don’t take it. They just want the option. They want to be empowered to have a choice. They have no choice about being about to die, but they would like to have certain other choices.
It’s also important to realize that assisted dying is not a very common occurrence in Oregon. We have about 35,000 deaths every year, and last year 170 people took the medication—about 0.2 percent of our deaths. This ratio holds true in other states as well.
This is a really important part of the conversation. I think you may have noticed, I have not called medical aid in dying “suicide”—it’s also called “voluntary assisted dying” or “physician-assisted dying”—we don’t use the word suicide because it’s not suicide. It’s a completely different situation. I, unfortunately, early in my practice, was called to the home of a patient of mine, a hospice patient. I walked into the bedroom, and he had taken a shotgun and put it into his mouth and pulled the trigger. I still have nightmares about that experience. It was terrible for me, and for my wife, who came over to help, to clean, to take care of his widow and their family. It was a horrible thing.
In contrast, I attended a planned death eight days ago, where a woman who was dying of a peritoneal carcinomatosis had her seven grandchildren there at her bedside, her kids, her dog, her own music. It was a beautiful, serene death, peaceful, the family all together. They were sad that she died, but they were happy she was no longer suffering. These are two completely different situations.
Suicide is an epidemic in our society, one we need to spend more resources on preventing. A suicide is often an impulse act and the person who commits it has some kind of mental illness. These people have PTSD, they have addictive personality trait, they have major depressive disorder or whatever. Aid-in-dying patients are the opposite of impulsive. They have planned this, they have thought it out. They have the support of their families. They’re with their families. And so the grief reaction after aid in dying is normal, whereas a grief reaction to a suicide is terrible for the family, for the loved ones, and for the medical team, too.
B. J. Miller is a fellow I know, a hospice doctor. He talks about how the language we use at end of life is so important—that we don’t ever use language that causes shame or fear or guilt or anxiety for the person who is dying. We want to use kind, and not hurtful, language. And that’s why calling what we are doing “aid in dying” is really different from calling it “suicide.”
As I’ve said, only a quarter of the people who consider aid in dying as an end-of-life option use it because they don’t have adequate pain control. That’s been a huge, wonderful change in the forty years I’ve practiced medicine. But we can’t always manage intolerable suffering. And who defines suffering? It’s the patient who defines suffering, it’s not the doctor. That’s really important to remember.
Historically, most people who use aid in dying have been cancer patients. But more often now we’re seeing other kinds of things creep in. For instance, ALS, which is a terrible disease. It’s always fatal and it always results in complete body paralysis. Aid in dying is being considered by those patients more frequently. And now terminal emphysema and heart failure patients are doing so as well. One of the patients for whom I prescribed medication had terminal emphysema. She’d been on and off a ventilator, she had had pneumonia over and over again. She was on oxygen, she couldn’t even get out of bed. She was being smothered. Every moment, she was being smothered. It was terrible. She had a terrible experience at the end of life, and she chose aid in dying.
To go back: When I came to medical school in Oregon, the enemy for me was death. I was going to cure everybody I saw. I was going to learn as much as I could, so that I could be the best doctor and go do that. And one of the things I did learn in medical school was that death is not the enemy. All of us are going to die, and there are many wonderful things that you, as future doctors, can do that will assuage people’s diseases and make them healthier.
The enemy, again, is terminal suffering, when you have just a few days left to live and you’re having pain that’s intolerable. When I have conversations with people who are opposed to aid in dying, and I ask them how anybody could be in favor of suffering at the end of life, how could anyone support that, they generally agree with me.
There are two things that matter in end-of-life care: comforting our patients, and respecting their wishes. We take care of people, we never abandon them. We honor their choices. It’s not about us, it’s about them. That’s what aid in dying is about—honoring people’s choices, preventing suffering, and comforting individuals at the end of life.
QUESTIONS FROM STUDENTS
About fifty second-year medical students attended Dr. Grube’s lecture. They sat in a large auditorium, chatting loudly with one another before the lecture began. There were more women than men, from many races and ethnicities, all dressed casually.
STUDENT: So, when discussing different options with patients, how do you go about approaching this as an option? Is it as soon as a terminal diagnosis is made, as soon as you sense that a patient is open to this sort of option? Do you bring it up or does the patient?
DR. G: What a great question! It depends, of course. Most of these people have been sick for a long time, and about 95 percent of these people are in hospice. They’ve been through years of chemotherapy and many surgeries. Most of them aren’t naïve about the situation.
A good palliative-care physician asks questions like “How do you conceive of or perceive your last day? Where do you want to be? Do you want to be in the h
ospital?” Some people want to be. “If we can get you there, do you want to be at home with your loved ones? Do you want to plan your death? Do you want to have it at a time you choose? Do you want hospice?” All those kinds of questions.
The reality is, the patients bring it up. Almost never do you have to say, “Well, now you can do palliative care, you can do terminal sedation, you can do deep sedation, you can do voluntary stopping of eating and drinking.” It isn’t like that. It’s more like getting to where they are. What are their fears? What are their anxieties? How can we deal with those feelings?
STUDENT: If the patient makes the decision that this is something they want to do, and they get the medications, how often do they use the medication versus deciding not to?
DR. G: About half the people who begin the process die before they get through it. These are protections that we have; there’s a waiting period of two weeks, and you have to see two different doctors, and sign paperwork. There are different protections, so that people don’t just do this willy-nilly. Average length of time to go through the process is a month, and about half the people die before that.
STUDENT: How do states that don’t allow medical aid in dying justify the idea that palliative care is so much better than medical aid in dying? From what I know of palliative care, if someone is truly suffering, doctors will put them in almost a comatose state until they pass away naturally. What is the justification that the states have for preventing medical aid in dying from being an option?
DR. G: Continuous deep sedation, which we used to call “palliative sedation,” or “terminal sedation,” is a very high-tech thing. Generally, you’ve got to be in a facility; you don’t usually do it at home. It’s controlled by the doctor. The doctor puts you to sleep and keeps you asleep until you pass away. It’s all really about the doctor rather than the patient.