When My Time Comes

by Diane Rehm

  D: Did he tell you of his condition? [Roger has prostate cancer.]

  H: Not initially. But he did tell me about it before he started talking more openly at the tables and with the folks who come to our programs.

  D: Are there others who’ve come to the Death Cafe and said, “You know, I’m really sick. And I’ve been told I have a limited time to live, and I want to know what my options are”?

  H: Yes, they want a place to come and talk about it. Some people can’t talk with their families or haven’t learned how to talk with their families, and coming to Death Cafe helps them learn some of those communications skills or approaches. Sometimes we do talk about how difficult it can be to speak to family members about it.

  D: What about young people? Do they come, as well as older folks?

  H: Yes, but not as many. The majority of our participants are probably baby boomers, reaching that point where they’ve begun thinking about what lies ahead. Or they have aging parents.

  D: I have the impression that this whole movement is truly catching on across the country, and that people are thinking about what happens when they die, and how to prepare. I think that’s fairly new because we’re living longer.

  H: I think when we realize that we’re all going to die, and we think about death and the opportunities there are, it enhances our lives to be able to embrace it as an important part of life, just as important as birth.

  D: Do the people who come to Death Cafes want to be educated, for example about voluntary stopping of eating and drinking?

  H: We make it pretty clear, because we’ve agreed to be part of the social franchise that is Death Cafe, not to do education at the tables. So we created the death education program as something that is separate but meets the need, because the majority of people who come want to learn. They want to know what their options are. But in terms of lecturing or talking about action options, we reserve that for our programs.

  D: Tell me why you think these end-of-life discussions are so important.

  H: It’s an important part of life that has been hidden for so long. It’s been a taboo subject, and we don’t have an opportunity to talk about death and dying. Death is hidden away. Death now happens generally in a hospital or a facility, or behind closed doors. We don’t interact with the dying, and so it’s unfamiliar. I think that’s where the fear comes from: death just doesn’t seem normal. Only a few decades ago, Grandpa used to die at home, and the family cared for him and maybe his body afterward. We’ve hidden ourselves from death. It’s important to bring it out of the closet, to hold conversations. Talking about death can be a life-affirming exercise.

  Rev. William Lamar

  METROPOLITAN AFRICAN METHODIST EPISCOPAL CHURCH, WASHINGTON, D.C.

  Reverend Lamar and I meet in the sanctuary of the Metropolitan AME Church. The balcony railings are covered with African kente cloths of every color. The curved wooden pews are original to the building, strong, sturdy, in an arena-like formation, and magnificently sculpted at each end. Stained glass windows are on both sides of the interior, with a large pipe organ at the front. At the back of the church is a large round stained glass window, which reminds me of the rose window at the back of the Washington National Cathedral.

  I ask Reverend Lamar about the church.

  REV. LAMAR: This church was completed in the 1880s. If you consider that time, and persons of African descent building a facility this grand…I tell people that it speaks to the fact that they viewed themselves and they viewed their God very differently than society viewed them. And they wanted their progeny to see themselves as large, to see their accomplishments as large, and to trust that there was a God who would help them in that quest.

  In the 1880s, African Americans could not participate broadly in the larger economy. So they had to self-finance the structure. When you look around and you read the inscriptions in the windows, you’ll see Georgia Conference, Alabama, Texas, Tennessee. All of the localities where there are African Methodists throughout the nation sent money so the church could be built. And if you sent, I believe, a hundred dollars, you got the name of your conference on a window. So these windows tell the story of persons, some of whom might have been enslaved, most probably the children of enslaved, who gathered meager resources. I often want to talk about the fact that these persons were philanthropists. We normally think of philanthropists as persons with access to huge resources. But these were true philanthropists. They took meager resources, pooled them together, and were able to build not only stunning churches but amazing universities and colleges and institutions that shielded life in the midst of much of America’s brutality in that period.

  Turning to another subject, I said I believed he had opposed the passage of the District of Columbia’s medical aid in dying law.

  REV. L: Yes. Diane, the reason I opposed the law was the deep history of malfeasance when it comes to the United States of America and the medical establishment’s lack of commitment to caring equally for bodies that are not white. I feel like it’s my responsibility to not take at face value things that are said about what we will do, how we will enforce equity, because there are just too many examples of those things not happening.

  There are some things that are as American as apple pie, and that kind of inequity is very American. I don’t know if at the macrolegislative level those things can be addressed. They have to be addressed person by person, case by case. I think it’s a matter of understanding the spirit and intent of the law, but being very cautious about how the law itself is interpreted and executed. If the world were filled with people like you, I might feel differently. But I’m also aware, based on history and current events, that those things don’t often happen. Support for this law could be used in a back-door way to injure the very people that I seek to assist. I feel like I’m playing a politician’s game right now, and I really don’t want to be perceived that way. I understand the law, I support what the law makes available, but I do not trust the government and establishment to be fair.

  We know of the syphilis experiment and Henrietta Lacks and how oftentimes we have been used as human guinea pigs. If I had a magic wand that would ensure that no person at all, no matter who they are, would be discriminated against, would be experimented upon, and they would be treated fairly and equitably…There are studies that show if you have pain and you are black, versus a white person in pain, physicians think differently about whether or not you are telling the truth. And there are a lot of things to be unraveled in the history of African ancestry, people of African ancestry and their bodies in America, that I have a pastoral concern and a political concern about. If I knew that the person trusted his or her physician and had a clear personal relationship with that physician and knew beyond a shadow of a doubt as much as we can know, that that physician cared, loved the person as an individual, and that he or she would be treated fairly and honorably, and if this was that person’s decision, then I would support it.

  D: So what you’re saying, or suggesting, is that overall, there is mistrust on the part of the African American community, or among the people you know?

  REV. L: Yes.

  D: About whether physicians would be acting honorably, or whether there might be some underlying racist reason to suggest that life should be helped to come to an end?

  REV. L: I think it moves beyond the realm of a conspiracy theory, because there’s documented proof of medical malfeasance, even diabolical medical practice. A lot of the innovations in gynecological care took place because women of African descent were experimented upon. What I never want to do is lose that historical perspective. You’ve got the Voting Rights Act, and then in 2013, it’s gutted by the Supreme Court. There are always people working on reversing justice, and returning to the status quo, for their own benefit.

  D: Here in D.C., of course, we now have the right to medical aid in dying.
Has anyone in your own faith community here at the AME church chosen to use that?

  REV. L: No, not to my knowledge. But I feel as equipped as one can feel that if someone comes to me, we can have a robust conversation. I think about my own death. We live in a culture that seems to hide from mortality.

  D: They pretend it’s not going to happen?

  REV. L: Yes. And you know what’s fascinating in our world? Ash Wednesday. From dust you are made, to dust you shall return. I’ve spoken with a lot of parents, and people are concerned about being a burden to family. People are concerned about the economic realities of longevity for the sake of longevity, absent quality of life. And it seems to me to be one of the topics where truth is not found in generalization but in granularity, one conversation, one human being at a time.

  D: So do you believe the concerns of the African American community are different from those of the white community?

  REV. L: I think so. I think it’s as real as the fact that if you are white parents, you don’t have to have a conversation with your son about driving or walking down the street. I think there are things that persons of African descent in America have to worry about and think about that white people don’t necessarily have to worry about or think about, because of stereotypes, because of socioeconomic and political structures. So that would be where I start the conversation. I need guarantees that people will be treated fairly, equitably, and humanely regardless of how they look, or what their cultural or linguistic or racial backgrounds might be.

  D: What about the disabled community? Do you think there’s a lot of hesitation there for those same reasons?

  REV. L: Oh, yes. And I remember radio programs about eugenics. Let’s be very clear about movements in this nation and around the world where “undesirables” were killed, were exterminated, were experimented upon. I think all these conversations must begin with robust historical contexts if people are serious about this being an equitable opportunity for persons across the board. Diane, I become very, very suspicious. For example, if you talk about Iranian American relations and you begin in 1979, I’m dubious if you don’t talk about what happened in 1953, and what happened with the British when they were trying to get hold of the oil.

  D: Oregon has had twenty years of experience with medical aid in dying. There has not been one question raised about treatment of any individual who has chosen to use it. In fact, of those who’ve received the medications over these twenty years, one-third have not used them. They’ve asked for, been given, gone through all the process involved to acquire the medication, but in the end, chose not to use it. But there has not been a single issue raised about anyone who’s used it, no forcing, no complaints from relatives, no charges of wanting the inheritance of someone else, not one issue raised. I wonder if that gives you a tiny bit of assurance about what’s happening.

  REV. L: I think that is very reassuring. I think it speaks to the medical establishment that they take it very seriously. I think also, if you consider states, at least from my vantage point, Oregon’s politics resonate more with an equitable understanding of how resources are to be shared and used. So that makes sense. It does give me hope. And I think that if there are more states, more jurisdictions, who can show that this is done well, I think more people of African descent in America might be willing to participate. If we’re honest, people of African descent in America have decided for years to die rather than to subject themselves to certain kinds of living. During the transport from Africa to the Americas, persons would throw themselves overboard. It’s even enshrined in music that we sing: “Before I be a slave, I be buried in my grave.”

  D: So, the issue of trust is central to your thinking?

  REV. L: If there were a group of physicians that I trusted, that I knew were respecting me…Let’s make the assumption that the persons who would be seeking this assistance would be elderly black people. Well, I have an example of the way elderly black people are disrespected in this culture. The president of my own university got sick and he was sent to, like, an indigent space until someone saw him and said, “Wait a minute, that’s so-and-so.” So then he was sent elsewhere. And the reason he was sent to that place is because he was black. They didn’t ask him what degrees he had.

  D: Which university?

  REV. L: Florida A&M University, my beloved alma mater. And there are multiple stories of people in this church who are prominent. Some of them are internationally prominent. And the way they have been treated, until someone says, “Oh, but that’s so-and-so”—well, I shouldn’t have to be so-and-so to be treated like a human being. I feel like it would be dereliction of duty to pretend that right will be done because it’s right. It would be my fondest hope and wish, but unfortunately, it’s not so often the case.

  D: For you, Reverend Lamar, what would be a good death?

  REV. L: A good death for me, Diane, would be to be surrounded by those I love, to feel like, hopefully, prayerfully, that I had fulfilled much of my purpose for being alive and to be able, as much as possible, to make decisions that resonate with who I am at the time of death. I would hope that someone would be able to ask me and I would be able to respond, do I want this intervention, do I not want this intervention, am I ready to cross over, am I ready to travel to the realm of the ancestors. I would hope I would be cogent enough or cognizant enough to make those decisions for myself. That would be a good death.

  To quote John Wesley, who said on his deathbed, “The best of all is God is with us.” For me to feel in that decision that I am tracking with the one who I feel gives life and makes life possible. I think in that way I could say, as our ancestors said, “I want to die easy when I die.” I love that. There’s a song, “I want to die easy when I die, shout salvation as I fly, I want to die easy when I die.” And I think an easy, beautiful death, not assaulted by pain, is one of the great gifts of being mortal. I hope I have that gift.

  Dr. Roger Kligler

  A SUPPORTER OF MEDICAL AID IN DYING

  Roger Kligler is a Georgetown University–trained physician and an ardent supporter of medical aid in dying. He’s married, with three children. I talked with Roger in January 2018.

  After undergoing six biopsies at age fifty, he learned he had prostate cancer. As a physician, he knew that even given the diagnosis he could possibly live for fifteen more years. He told himself that prostate cancer is usually a curable disease—most men who have it die of something else. But he also knew from treating his own patients that the disease is more aggressive the younger you are.

  After researching all the options and listening to all the specialists, he decided to follow the course that would give him the best chance as a fifty-year-old of a cure. He opted for a radical prostatectomy, waiting through the winter season for warm weather so that he could take leisurely walks after the surgery. His wife agreed with his decision, even though, like him, she was aware that removal of the prostate often causes impotence and may cause incontinence.

  Ten years earlier, Roger and his wife had seen six family members die within eighteen months of one another, his mother and his father-in-law both dying very painful deaths. At that point, he says, he vowed, “I’m not going to die that way. I’m a physician. If the time comes, I’ll know what to do to take care of myself so I don’t have to go through that kind of suffering.”

  Later, he said, he realized how unfair this was. If a death without suffering was what he wanted, and it was readily available to him, why should it not be available to others as well? He called this “the definition of justice,” that what’s available to one person is available to everyone in like circumstances. People who do not wish to endure suffering should have that option.

  “People are not dying well,” he went on. “Twenty-five percent of people who die with chronic illness die with uncontrollable pain, and that’s despite hospice and palliative care. Twenty percent of people die with un
controlled shortness of breath. At a certain point you realize, I’m not going to get better. Today is the best day of the rest of my life. I’m not going to be able to have joy in my life. I’m in chronic pain, I don’t feel well, I have no energy, it’s an effort to feed myself. I watched my mother die of pancreatic cancer. She’d eat a meal and then go lie down. It wasn’t a life for her. She was a phenomenally bright woman who broke through glass ceilings, but now she wasn’t able to live her life, she wasn’t able to do what was important to her. She had a very painful death.”

  DIANE: But, surely the doctors caring for her must have been able to provide her with painkilling medications. Were they afraid that giving her too much medication would harm her?

  DR. KLIGLER: What is harm, and who gets to define harm? My feeling is that it’s the individual who should define what’s harm for him or her. If I keep people alive so that they’re suffering, is that doing no harm? If someone wants to end his suffering, I don’t feel I’m doing any harm, and I have no ethical problem.

  I’ve helped people die in many ways. I’ve had patients who said, “I don’t want to stay on a ventilator the rest of my life.” So we’d talk about it and I’d say, “We’ll put you on a ventilator and try to get you better within a given time frame, but if you’re not getting better, what do you want me to do? If I take you off, you’re likely going to die.” In some cases, I’ve literally pulled the tube out of patients and have helped them die because they’ve said they don’t want to remain on a ventilator for the rest of their lives. Same with dialysis. Some people say they’ve had it, and don’t want to have dialysis anymore. They’ve had enough.