When My Time Comes

Barbara Coombs Lee

PRESIDENT, COMPASSION & CHOICES

Barbara Coombs Lee began her medical career as a candy striper at St. Joseph Hospital in Joliet, Illinois. As she writes in her book, Finish Strong: Putting Your Priorities First at Life’s End, she’s been working in health care for almost fifty-five years, specializing in intensive care and emergency rooms, caring for very ill patients, helping them stay alive. However, she came to believe in an individual’s right to finish life on his or her own terms. She remembers the day: May 19, 1994, the day Jacqueline Kennedy Onassis died of non-Hodgkin’s lymphoma.

She writes: “Her son, John F. Kennedy, Jr., emerged from her apartment that morning and comforted the crowd that stood grieving on Fifth Avenue. He said, ‘My mother died surrounded by her friends and her family and her books. She did it in her own way and on her own terms. And we all feel lucky for that.’ ”

Barbara said that moment motivated her to find a way to avert the suffering that so many undergo at the end of life. She became a public advocate, gaining admission to the Oregon State Bar, and ultimately joining the staff of the Oregon Senate Healthcare and Bioethics Committee. In 1994, the year of her conversion, she became one of the three chief petitioners who filed the Oregon Death with Dignity Act as a citizens’ initiative. She writes, “I spent the next fourteen years defending the resulting Death with Dignity law from efforts to undo it in every governmental arena—legislative, executive and judicial.”

Oregon’s law had been embattled until 2006, when the U.S. Supreme Court finally ruled that states have the authority to adopt medical aid in dying as part of the legitimate practice of medicine.

On February 12, 2019, I interviewed Barbara for my podcast, On My Mind.

I began by asking her about the lessons she had learned from caring for people who had not died well, who had had unwanted treatments and been kept alive against their wishes.

“The technology that medicine wields, and of which we are so proud, is not necessarily in an individual’s best interest. Only individuals can review their lives, their beliefs, their values, and decide what is best for them. It took many more years and many more bedside experiences in intensive care units, emergency rooms, nursing homes, et cetera, before I had what you might call a broader understanding of people’s end-of-life journey. I learned that it might be different for each of us. It’s as though medicine has gotten ahead of human desire. There are so many ways to keep us alive, and yet the incredibly sophisticated means of keeping people alive don’t always take into account what people themselves want.”

Barbara calls dying in America a “terrible mess.” She says, “We torture people with treatments that are futile and enormously burdensome, robbing them of the precious quality of their remaining days, robbing them of the time they would otherwise want to devote to the priorities of their lives, the legacy of memories they would like to leave their 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. Something like 30 to 40 percent of people have an ICU admission in the last thirty days of life. Nine out of ten people with dementia—profound dementia—have some sort of invasive procedure. In the last month of life, we are replacing humanity with technology.”

Diane: Tell the story of Maria, an eighty-two-year-old who has do not resuscitate, or DNR, orders. What happened to her?

Barbara: She had her advance directive. She made sure everyone had the directive and knew she did not want to have any resuscitation efforts applied when she was admitted to the hospital emergency room for some abdominal pain. She had done what we’re supposed to do, and she did it in spades. She wanted to make sure that everyone in the hospital knew about her request, and that if some calamity happened during her hospitalization, she would not have to undergo resuscitation efforts. And then, one night, very peacefully, her heart stopped and her advance directive was just ignored. She was given CPR entirely against the likelihood that she would be revived. She was revived and taken to the ICU, and her son and grandson were told what had happened to her. And they 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.

D:But how could this happen? If she went into the hospital with an advance directive, why was it ignored? How frequently does that happen?

B:The sad truth, Diane, is that advance directives are often ignored, particularly in situations like this, when a sudden catastrophe occurs. Advance directives on their face apply in two circumstances. If a person is terminally ill or permanently unconscious, that’s when medical providers are told to honor the wishes of the patient. Well, physicians are loath to say that someone is “terminally ill” or “permanently unconscious.” I would venture to say that even if Maria’s physicians were 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. They think they’re going to bring her back! She’s just having a little spell, and they can bring her around. In legal terms, the conditions of terminal illness or permanent unconsciousness in her advance directive have not been met.

D:That makes me wonder whether if something were to happen to me—if I’m having a heart attack or a stroke—I would really want to go to a hospital.

B:There’s a balance. If I see someone drop down on the sidewalk in front of me and her heart has stopped, I wouldn’t consult her advance directive either. I’d give her a good thump and see if I can restart her heart. But in very short order, someone needs to inquire what the person’s desires are. Would he or she want a vigorous resuscitation effort? And for how long? The atrocity that was committed on Maria was not that she got one shock, but that she was held captive in the ICU and they refused to take her off these machines and take out the tubes, even when she communicated by hand squeezes. They did not honor her specific instruction.

D:Had Maria been in a religiously affiliated hospital?

B:No. I think it’s more indicative of the prevailing mentality and the desire of the medical community to not give up too soon. The determination to bring her back. Compare Maria’s story with Lorraine Bayless, the woman who had the “good fortune” to die on the cafeteria floor of her independent living facility. She was not subjected to CPR because it was not the facility’s policy, but someone called 911. And once 911 was involved, all the death aversion in our society and our nation swept full force into the cafeteria. The 911 operator just would not let go. I think the woman was about eighty-five, and she’d had a sudden massive stroke. She was very close to death. And the people around her wanted someone to breathe into her mouth or get paddles.

D:As I recall from your book, the care facility in which the woman resided was prohibited from doing anything to actively try to resuscitate. Articles then appeared in The New York Times and elsewhere calling the institution cruel because it did not lift a finger to resuscitate.

B:Right. You know, 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’ve been likely to bounce back from a total collapse of her cerebral vascular and cardiovascular systems and go on to lead a high-quality life for many years, and that the institution depriving her of this opportunity was criminal.

Her daughters came to the situation with much more common sense and an intimate knowledge of their mother and her desires. They said, “We are not litigious people. Moreover, our mom knew what she wanted. She wanted to be in an institution where she could die peacefully. And so we won’t be suing anyone for granting her wish.”

D:What exactly are you advising people to do, so that they can “finish strong”?

B:Finish in a way that aligns with your priorities. Make sure it is a fitting closure to your values and beliefs. My book is really not a book about dying. It’s a book about living. It’s a book about living fully and not being abducted onto a conveyor belt of medical technology that leads to a robbing of your priorities, and a displacement of the things that you value most at the end of life. Live your last precious months or weeks, or even years, according to the things that give you the most joy.

D:I believe that one of the critical elements of “finishing strong” is having a conversation with children, parents, loved ones, and friends as to exactly what you want. There are so many people reluctant to raise the subject. It’s the last taboo. We don’t talk about death. I remember speaking in a church in Massachusetts. There were about three or four hundred people in the congregation, and I began by saying, “Please raise your hand if you plan not to die.” And of course there was great giggling in the audience, but it was an uncomfortable giggling. People just don’t want to raise the subject. How do we get past that?

B:I would say it’s not just one conversation but many conversations, an ongoing dialogue. That includes recording your values and priorities in a video or on your iPhone or something, so that people will remember. It’s hard to have a conversation about what I want because there are so many variables, depending on what situation I find myself in.

But what will guide people is what I cherish. I think the most important thing we can tell our loved ones is “If you are asked to make decisions when I cannot, know this above all: My values. Know what I hold to be most sacred in my life that I would never want to give up. And if I cannot reclaim that, if the likelihood of my reclaiming that in the future is very low, then act accordingly.” Now there’s a lot of emphasis on when these decisions are 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 conveyor belt of futile and burdensome care, that rob us of the quality of our life, we make ourselves when we are conscious and capable of making health-care decisions. But all too often, we just don’t have enough information to make those decisions in a smart way. We don’t understand what we’re getting into, and we don’t understand that we can hop off the conveyor belt at some time in the future. So we must learn to ask questions.

We must learn to ask, when any test or treatment is proposed, how efficacious it is, how many people in my situation are cured by this treatment, how many have had their lives extended by this treatment. Zero to 2 percent. Extended by how much? Well, by three to four weeks. At what cost? What are the burdens of this treatment? How much time does it take? How will I feel afterward? Will I be able to do the things I enjoy? We make those decisions, we sign the consent form and say, “Yes, sign me up to do this treatment.” But we don’t realize that it may be futile and it may be robbing us of our quality of life and our precious time.

D:Should right to die laws apply to people with Alzheimer’s disease, or is that a step too far?

B:Medical aid in dying is hard to apply to people with Alzheimer’s, because it’s hard to imagine delivering a life-ending medication to people who don’t know that they’re taking it, or aren’t physically capable of taking it. I don’t think that the American people are likely to adopt a 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 or Alzheimer’s is not the real problem. The real problem is all the things we currently do to delay the natural process of dying.

My book speaks honestly about how one might make a plan to escape dementia—not endure and fail to 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 that is delivered by a third party. Most people with advanced dementia have some kind of invasive procedure to keep them alive, in most cases not something they would have chosen. We’re not allowing nature to take its course. If there is an infection, we treat it. If there is pneumonia, we treat it. If people aren’t drinking and they’re dehydrated, we start IVs and we rehydrate them. We might spend a year sustaining the bodily functions that would normally decline and stop altogether if we allowed the disease to take its natural course. I say there’s no shame, there’s no guilt in having and articulating an intention to die. If I am not actually living, but only 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.

D:I spoke clearly to my grandson while he recorded me on a cell phone, to let him and others know my wish if I begin to feel the effects and recognize the effects of dementia coming on. Thus I have it on record for family that I do not wish to survive the end stages of dementia. It’s so important, as you say, to think about what happens down the line; not just for today, but as time goes on.

B:Good for you, Diane. That’s brilliant. We’re working right now on a tool at Compassion & Choices called the Dementia Decoder that 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 the progression doesn’t continue beyond that threshold. It takes a clear-eyed determination, and I know you have it. It takes a loving family. And it takes some thought and some articulation so that people are armed with the knowledge they need and the tools to act on it when that threshold approaches.