TRANSCRIPT of “On My Mind” conversation between Barbara Coombs Lee and Diane Rehm, February 12, 2019

Diane Rehm: Hi, it's Diane. Great to be back with you for our Tuesday podcast—On My Mind, decisions about end-of-life care.

As you might know, I'm an advocate for the medical aid-in-dying movement. In fact, later this week I'll be testifying in Maryland's capital to support the passage of that state’s End-of-Life Option Act. Through my advocacy work, I've gotten to know Barbara Coombs Lee. She's president at the organization Compassion & Choices. For decades, she's been a leading voice in educating Americans about how to prepare themselves and their loved ones to die. She's now written a new book. It's titled, Finish Strong: Putting Your Priorities First at Life's End. It outlines what we as a society get wrong about death and how she says we can do it better. Barbara Coombs Lee, it's great to talk with you again.

Barbara Coombs Lee: It's wonderful to be with you, Diane. Always such an honor and a pleasure.

Diane Rehm: Thank you. Tell me about the first time you began to question the whole issue of how we handle end-of-life care?

Barbara Coombs Lee: Your life never makes sense going through it, living it. It only makes sense looking back at it. Writing this book, Finish Strong, helped me do that and helped me identify some markers, some benchmarks that gave me my particular sensibilities, my particular understandings about the path in the end-of-life journey.

I talk about one of them in the preface, and that was when I was a very young nurse—we're talking, maybe age 22 when I was working in a coronary care unit. In those days, it was new technology just come on line and new responsibilities for nurses to do CPR, and deliver medications and all of that according to standing orders. It was in Seattle. A patient named Ed and I had become pretty close because he essentially had difficulty living outside the coronary care unit. His heart failure was so bad.

One night as I was watching his heartbeat on the monitors, it started to get a little bit erratic, which was not anything terribly unusual. I got up, and I walked into his room with the medication. He was sleeping soundly, and I expected I was going to be able to correct his rhythm without even waking him up.

Then suddenly his heart went into a fatal arrhythmia call ventricular tachycardia and then ventricular fibrillation very, very quickly. I did what I was trained to do. I grabbed the defibrillation paddles and put them on his chest and delivered the shock. The shock woke him up with a start, and he was so angry at me. He said, "Barbara, why did you do that to me? How dare you? Don't you ever do that to me again!"

I was just devastated. I felt that he felt I had violated him in some way. I started crying, and he forgave me. I apologized, and then we realized he was in the wrong place. He was in a unit where rescue was what we were supposed to do, and he was so advanced in his illness that rescue from a peaceful, a very peaceful death was not appropriate for him. He instinctively knew that, and he was angry at me for doing it.

Diane Rehm: He knew exactly what he wanted.

Barbara Coombs Lee: Well, only after the fact, he knew what he didn't want.

Diane Rehm: From that, I mean, you really learned a lesson. How would you describe that lesson you learned?

Barbara Coombs Lee: That the technology that medicine wields, of which we are so proud, is not necessarily in an individual's best interest. Only individuals themselves can review their life, their beliefs, their values, put their priorities in place and decide what is best for them.

Diane Rehm: Barbara, that was back in 1972, so what did you take away from that experience?

Barbara Coombs Lee: I took away a sensibility, I took away an understanding. But I certainly didn't take away a plan of action or a devotion to advocacy or anything like that. It took many more years, and many more bedside experiences—experiences in intensive care units, emergency rooms, nursing homes, etc.—before I had what you might call a broader understanding of people's end-of-life journey and how they might be different for each of us.

Diane Rehm: You know what, it's so interesting. It is as though medicine has gotten ahead of human desire. I mean, there are so many ways to keep us alive, and yet the incredibly sophisticated means of keeping people alive does not always or not necessarily take into account what it is that people themselves want.

Barbara Coombs Lee: And, who people themselves are. You said medicine has gotten ahead of human desire. I would say medicine has gotten ahead of the human condition, the state of mortality that binds us together, that makes us look at each other and say, "There goes my brother. There goes my sister." In the final analysis, we all walk the path of our mortality.

We live in this bubble of delusion that medical science can extend our lives indefinitely and I think that bubble to a certain degree chips away at the quality of our life. Because we forget to be inspired. We forget to be joyful. We forget to celebrate every precious moment knowing that it is transient.

Diane Rehm: Indeed you write that as we find ourselves here in 2019 dying in America is a terrible mess. What do you mean by that?

Barbara Coombs Lee: It is a terrible mess. We torture people with treatments that are futile and enormously burdensome, that rob them of the precious quality of their remaining days, that rob them of the time that they would otherwise want to devote to the priorities of their lives. What makes lives joyful, what is the legacy of memories, what would we like to leave our loved ones? We concentrate on extending the absolute duration of life, irrespective of how dismal and degraded and burdensome the quality of that life might be.

So, something like 30 to 35% of people have an ICU admission in the last 30 days of life. People with dementia, profound dementia where they are in the final stages of dementia, nine out of 10 of them have some sort of invasive procedure in the last month before they die. We are replacing humanity with technology.

Diane Rehm: You tell the story of, Maria. She is 82. She has Do Not Resuscitate or DNR orders, but what happens to her?

Barbara Coombs Lee: Maria didn't actually have a DNR. What she had was her Advance Directives. She had done what we're all taught we’re supposed to do, and she did it in spades. She made sure everyone had this advance directive and everyone knew she did not want to have any resuscitation efforts applied.

She took her directive with her to the emergency room when she was admitted for abdominal pain. She wanted to make sure everyone in the hospital knew this was her request, that if something, some calamity happened during her hospitalization, she would not receive resuscitation efforts. Then that night very quietly, very peacefully... her heart did stop. And her advance directives were just ignored. She had CPR quite against all likelihood that she would be revived.

But she was revived, and taken to the ICU. Her son was told about what had happened to her. He visited her in the ICU, and she was devastated. She was alert. She was angry. She couldn't speak because there were tubes in her mouth and down her throat. But she knew she had been violated. She knew her wishes had gone unheard.

Diane Rehm: All right, but here's what I don't understand, if she went into that hospital with an Advance Directive, why was that Advance Directive ignored and how frequently does that happen?

Barbara Coombs Lee: The sad truth, Diane, is that Advance Directives are often ignored, particularly in situations like this, where a sudden catastrophe occurs. Because Advance Directives on their face apply in two circumstances. If a person is terminally ill or permanently unconscious, that's when medical providers are instructed to honor the wishes. Well, physicians are loath to say that someone is terminally ill or permanently unconscious.

I would venture to say that if Maria's physicians were even aware there was an Advance Directive and a desire to refuse CPR, they would have ignored it anyway. Because in their minds, she's not terminally ill. We're going to bring her back. She's going to be fine. She's just having a little spell, and we can bring her around. “Terminal illness” and “permanent unconsciousness” are the  “conditions precedent” in legal terms. The document applies only under these conditions—terminal illness or permanent consciousness. Doctors would say the conditions necessary to invoke her Advance Directive have not been met.

Diane Rehm: Barbara, what that makes me wonder is if I were to feel as though I were having a heart attack or a stroke, would I really want to go to a hospital?

Barbara Coombs Lee: There's a balance. If I see someone drop down on the sidewalk in front of me and her heart has obviously stopped. I wouldn't consult their Advance Directive either. I'm going to give her a good thump and see if I can restart the heart. But in very short order there needs to be some inquiry about how old are they? What are their desires? What are their illnesses? Would they want a vigorous resuscitation effort, and for how long? The atrocity committed on Maria was not necessarily that she got one shock or some medication, but that she was then held captive in the ICU. When she communicated by her hand squeezes, “Take me off these things, take me off these machines, take these tubes out,” they refused. They did not honor that specific instruction from her. They discounted it.

Diane Rehm: Is that because of the type of hospital she was in? Was that a religiously affiliated hospital?

Barbara Coombs Lee: No, I think it's more indicative of the prevailing mentality, and the desire of the medical community to not give up too soon, don't give up. Don't give up, and the determination, "We're going to bring her back."

Compare Maria's story with Lorraine Bayless, the woman who had the, I'm going to say, ”good fortune” to die on the cafeteria floor of her independent living facility.

She was not subjected to CPR, because that was not the facility's policy. But someone called 911. Once the 911 mechanism came into play, all the death aversion of our society, of our nation, came full force into that cafeteria that day and the 911 operator just would not let go. Here's an 85-year-old woman who has had a sudden stroke, a massive stroke. She is very close to death and society’s mechanism, institutionalized resuscitation, is desperate: get her resuscitated, get someone to breathe in her mouth, get someone with some defibrillation paddles. Go out in the street, if you have to. The EMTs are on their way.

I would hope if that happened to me, someone would say, "Bring a blanket, bring some pillows, bring her loved ones," because I have just experienced a peaceful death at an appropriate time. That is everyone's desire.

Diane Rehm: As I recall the telling that story in your book, Finish Strong, you talk about the fact that the care facility in which she resided, was prohibited from doing anything actively to try to resuscitate, so there she lay on the floor. Articles appeared in The New York Times and elsewhere calling the institution itself cruel because it did not lift a finger to resuscitate.

Barbara Coombs Lee: Right. I wish I could pull up some of those news clips where very young journalists on the evening news were opining that this woman had been terribly abused. That in spite of her advanced age, she would have been likely to bounce back from a total collapse of her cerebral vascular and cardiovascular system and go on to lead a high quality life for many years, and that the institution depriving her of this opportunity was criminal. They were just sort of shaking their heads.

Now, her daughters came to the situation with much more common sense, and, of course, an intimate knowledge of her and her desires. Everyone thought a litigation was a foregone conclusion, but they said, “No, we're not litigious people. But moreover, our mom knew what she wanted. She knew she wanted to be in an institution where she could die peacefully if that befell her. So we won't be suing anyone for granting her wish.”

Diane Rehm: You write with the title, Finish Strong, so what are you advising people to do?

Barbara Coombs Lee: In my mind, a strong finish is a finish that aligns with your priorities and is a fitting closure to the values and the beliefs of your life. In a way, Finish Strong isn't really a book about dying. It's a book about living. It's a book about living fully and not being abducted onto some conveyor belt of medical technology that leads to the theft of your priorities, the displacement of the things you value most at the end-of-life. It’s a guide so you can live your last precious months or weeks, or even years, according to the things that give you the most joy, that epitomize the meaning and the purpose of your life.

Finish Strong isn't really a book about dying. It's a book about living. It's a book about living fully and not being abducted onto some conveyor belt of medical technology that leads to the theft of your priorities, the displacement of the things you value most at the end-of-life. It’s a guide so you can live your last precious months or weeks, or even years, according to the things that give you the most joy, that epitomize the meaning and the purpose of your life.

Diane Rehm: One of the critical elements of finishing strong, is to have a conversation with your children, your parents, your loved ones, your friends, as to exactly what it is you want. There are so many people reluctant to raise that subject. It's the last taboo—we don't talk about death. I remember speaking in a church in Massachusetts where there were about 300 or 400 people in the congregation, and I began by saying, "Please raise your hand if you plan not to die." Of course there was great giggling in the audience, but it was an uncomfortable giggling.

People do not want to raise this subject with anyone. How do we get past that? Because that's got to be a part of finishing strong.

Barbara Coombs Lee: Yes, and I would say not just one conversation, many conversations.

Diane Rehm: Of course.

Barbara Coombs Lee: An ongoing dialogue. Finish Strong also includes some recommendations about memorializing your values and priorities with videotape or just your iPhone or something so that people can remember. It's hard to have a conversation about “what I want,” because what I would want is subject to so many variables depending on what the situation is, where I find myself. So conversations are about what will guide people— what I cherish.

I think the most important thing we can tell our loved ones is, if you are called upon to make decisions, while I cannot anticipate this particular situation, please know my values, know what I hold to be most sacred in my life that I would not want to give up. And if the likelihood of my reclaiming that in the future is very low, then act accordingly, whatever that means.

Now, there's a lot of emphasis on these decisions being made for me by someone else. But the truth of the matter is that most decisions that get us in trouble, that put us on the overtreatment conveyor belt of futile and burdensome care that robs us of the quality of our life, and disrupts our priorities, we make ourselves. When we are conscious and capable of making healthcare decisions, we just don't have enough information to make those decisions in a smart way. We don't understand what we're getting into. We don't understand the conveyor belt we're getting on, and we don't understand that we can hop off the conveyor belt at some time in the future. I think one of the most important parts of the book also is about the questions to ask when any test or treatment is proposed.

The questions like: How efficacious is that? How many people in my situation are cured by this treatment? Oh, none. Well, how many have their life extended by their treatment? Oh, 2%. Well, extended by how much? By three to four weeks. Well, at what cost? What are the burdens of this treatment? How much time does it take? How much will I have to travel? How will I feel afterward? Will I be able to do the things I enjoy after I've had this treatment?

Instead, we make those decisions, we sign the consent form and say, "Yes, sign me up to endure this treatment." We don't know that it may be futile and it may rob us of life’s quality and our precious time.

Diane Rehm: One issue that is certainly in the ether to discuss but was a step too far for Oregon's Right To Die law, or any of the other medical aid-in-dying laws, no matter what they’re called in the six others states plus the District of Columbia, is Alzheimer's. Where do you think that discussion is going?

Barbara Coombs Lee: Medical aid and dying is hard to apply to people with Alzheimer's because it's hard to imagine delivering a life-ending medication to someone who doesn't know they're taking it or isn't even capable of taking it. So I don't think the American people are likely to adopt policy like that in the near future. But I would say this: the fact that medical aid in dying does not apply to people with dementia, Alzheimer’s and other dimensions is not the real problem. The real problem is all the things we currently do to delay the natural process of dying that is Alzheimer’s, that is dementia.

This book, Finish Strong, does speak honestly and openly about how one might make a plan to escape dementia. Not endure dementia, not cope with dementia, but escape it if a threshold of unacceptable deterioration is approaching. There are so many ways to invite an intended death without resorting to some lethal medication delivered by a third party.

As I said previously, most people with advanced dementia have some kind of invasive procedure at the end to keep them alive. Very likely not something they would have chosen. But long before that, we are not allowing nature to take its course. If there's an infection, we treat it. If there's pneumonia, we treat it. If the appetite has gone, we force feed. If people aren't drinking and they're becoming dehydrated, we start IVs and we rehydrate them. We spend years sustaining the bodily functions that would normally decline and stop altogether if we were to allow the natural course of the disease to run.

It's the intention to die, though, that I think we have a problem with as a society. That's one of the things about Finish Strong. It says there's no shame, there's no guilt in having and articulating an intention to die, an intention to cause death when as far as I'm concerned, I am not actually living, I'm existing. I want my loved ones to act on that intention, and if I am still capable, I will act on that intention if I see this threshold approaching quickly.

...most people with advanced dementia have some kind of invasive procedure at the end to keep them alive. Very likely not something they would have chosen. But long before that, we are not allowing nature to take its course. If there's an infection, we treat it. If there's pneumonia, we treat it. If the appetite has gone, we force feed. If people aren't drinking and they're becoming dehydrated, we start IVs and we rehydrate them. We spend years sustaining the bodily functions that would normally decline and stop altogether if we were to allow the natural course of the disease to run.

Diane Rehm: You know what I have done, I have spoken directly into a cell phone videotape to my grandson, who is holding the cell phone, talking about my wish to know from others if I began to feel the effects of dementia coming on. I have told my grandson and by virtue of telling him, telling my daughter, telling my son that I do not wish to survive the end stages of dementia.

I think it's so important exactly as you say, to think about what happens down the line, not just for today, but as time goes on.

Barbara Coombs Lee: Well, good for you, Diane. That's brilliant. We're working right now on a tool at Compassion and Choices called the Dementia Decoder. It will help people anticipate what may be in store for them, help people pinpoint the threshold they do not wish to cross, and help make it very clear to others around them that yes, they want this information, they want to know when that threshold is approaching, and then want to be able to implement steps so that progression doesn't continue, and continue, and continue beyond their chosen threshold.

It takes a clear-eyed, courageous determination, which I know you have. It takes a loving family that is loving enough to be as clear-eyed and as determined as the one they love. It takes some tools, it takes some thought, and some articulation so people are armed with the knowledge they need, and the tools of discernment when their threshold starts to come into view.

Diane Rehm: I want to ask you about a major sticking point when it comes to the issue of medical aid in dying, and that is religious belief. I know that the Roman Catholic Church has stepped in on many occasions to try to halt a state from enacting laws permitting medical aid and dying. How strong was that opposition in Oregon when you began pushing forward on that bill?

Barbara Coombs Lee: Essentially, all the organized opposition has come from the Roman Catholic Church. I would say, not the people in the pews of the Roman Catholic Church, but the doctrinal hierarchy of the Roman Catholic Church. I think one reason medical aid In dying is so important to them is that it is the most obvious example of intentional dying. It’s not just medical aid in dying, but any kind of intended death that is counter to the doctrine of the Roman Catholic Church. That doctrine just says it is never okay to intend your own death.

In fact, there are many ways to intend your own death. People can deactivate a pacemaker, they can stop their intracardiac defibrillator. They can discontinue dialysis, they can stop eating and drinking, they can refuse treatment that would be lifesaving treatment, all with an intention to die. What's lacking, because of that strong doctrinal aversion, is the willingness to be forthright about that intention, to honor that intention, and act on that intention or support someone who is acting on that intention.

As a result, quite apart from all of the opposition of the Roman Catholic Church to medical aid in dying, we also have a whole bioethical system that essentially deters candid conversations with people who would want to make a plan and implement a plan to intend to their death at a certain point. We walk all around it, we say, "Oh, we're not really intending death with the discontinuation of your renal dialysis. We're just relieving you of the burden. We know you for certain you're going to die, but that's not the intention."

The obfuscation is hard for people. It makes it harder for people to be discerning and clear-eyed about charting their own end-of-life path when they have to walk around the issue and not be forthright about what's actually happening.

...we also have a whole bioethical system that essentially deters candid conversations with people who would want to make a plan and implement a plan to intend to their death at a certain point. We walk all around it, we say, "Oh, we're not really intending death with the discontinuation of your renal dialysis. We're just relieving you of the burden. We know for certain you're going to die, but that's not the intention."

Diane Rehm: Finally, I know you have testified on behalf of medical aid in dying before numerous states legislatures. I am scheduled to testify Friday, February 15th, before the Maryland State Legislature on this very issue.

Barbara Coombs Lee: Diane, I have no doubt you will be very, very persuasive and compelling. Legislators, I think, need to know how important it is for people to have a sense of control, of autonomy, of agency over their own lives and how it relieves suffering and improves the quality of life irrespective of whether anyone actually ever self-administers medication. And I think that's one of the important things for legislators to understand, that the agency itself has a palliative impact.

It has a dramatic effect on the quality of remaining days, and a lot of people who obtain medication for medical aid in dying never take it. They die peacefully as their death overcomes them before they find themselves in the situation of intolerable suffering that they feared. I think it's important for legislators to know that medical aid in dying is actually on the palliative care spectrum. It is a means of improving the quality of life of dying individuals.

Diane Rehm: That's a wonderful way to put it, Barbara.

I want to congratulate you on your brand new book, Finish Strong. Thank you so much for joining me.

Barbara Coombs Lee: Thank you, Diane, and thank you for your testimony, and the film you're working on. Your work is so important. I really appreciate it.

The above transcript is adapted from Diane Rehm’s February 12, 2019 “On My Mind” podcast conversation with Barbara Coombs Lee, President of Compassion & Choices and author of FINISH STRONG: Putting Your Priorities First at Life’s End.
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