On this last episode, we look back on 23 years of joyous, difficult and always informative conversation.
D.C. is among nine jurisdictions in the United States that allows physician aid in dying.
While the measure is gaining support among lawmakers in Maryland and Virginia, the issue is still contentious among religious groups and disability rights activists.
As state legislatures in Maryland and Virginia grapple with right-to-die bills, the question remains: Should people have the right to choose when and how they die?
Produced by Ashley Lisenby
- Rev. William Lamar Pastor of Metropolitan African Methodist Episcopal Church in D.C.
- Sarah Farr Founder and Director of Death Positive D.C.; @deathpositivedc
- Katie Collins-Ihrke Executive Director, Accessible Resources for Independence
KOJO NNAMDIWelcome back. The issue of medical aid in dying for terminally ill people is a contentious one across the country. In nine jurisdictions, including Washington, D.C., doctors are legally allowed to prescribe medicine that will result in death. Virginia and Maryland have no such laws, but the legislatures in both states are currently considering right-to-die bills. So, who has the right to choose when and how they die, and how much power should patient, doctors and family members yield? Joining me to discuss this is Sarah Farr, founder and director of Death Positive D.C. Thank you so much for joining us.
SARAH FARRThank you.
NNAMDIThe Reverend William Lamar is the pastor of the historic Metropolitan African Methodist Episcopal Church in Washington, D.C. Reverend William Lamar, thank you for joining us.
WILLIAM LAMARThank you, Kojo.
NNAMDIThat church was constructed in, what, 1879 wasn't it?
LAMARWe were from 1881 to 1885, four years.
NNAMDI1881. You were one of the people who Diane Rehm spoke with for her book, "When My Time Comes." You told her you couldn't support physician aid in dying in D.C. because of its potential impact on African Americans who are aging and sick. There's a history, there. Talk about that.
LAMARA very distinct history documented, I think, very well in Harriet Washington's "Medical Apartheid," of the medical establishment in collusion with the government experimenting upon black bodies, robbing graves, saying that they were conducting healing, but actually injuring persons to study how diseases progressed.
LAMARAnd so, really, Kojo, my concern is that when it comes to medical intervention and the medical establishment, that human flourishing through a historical lens for African-Americans means that a hermeneutic of suspicion is necessary. So, I think that we have to be very, very careful to ensure that if this opportunity is afforded and extended, that people can make sure that they are protected. Because we've not always been protected, even by institutions and people who are duty-bound to protect us.
NNAMDIJoining us by phone is Katie Collins-Ihrke, executive director at Accessible Resource for Independence in Glen Burnie, Maryland. Katie, thank you for joining us.
KATIE COLLINS-IHRKEThank you, Kojo.
NNAMDISome disability activists have also been opposed to physician aid in dying, saying they feel vulnerable populations could be coerced. Here's Maryland Senator Jeff Waldstreicher, who is sponsoring the right-to-die bill in Maryland right now, reacting to those concerns.
JEFF WALDSTREICHERI am sensitive to the opposition and respect, especially people of faith, for whom that opposition is genuine. But when it comes to issues of people with disability, there's been no evidence of problems in other states.
NNAMDIHow would you respond to that, Katie? Doesn't this issue come down to choice?
COLLINS-IHRKEI think that there's quote, Marilyn Golden from the Disability Rights Education and Defense Fund said it best, that, you know, some people's lives will be ended without their consent (unintelligible) that have ever been enacted or proposed that will prevent this outcome, which cannot be undone. So, while nothing may have been recorded, one small mistake could be the end of someone's life, and you can't go back on that.
NNAMDIYou have said that the fight should be for access to better healthcare, instead. How would that help people suffering from painful terminal illness at the end of their lives?
COLLINS-IHRKEWell, so what we know, since Oregon's been doing this for a very long time, the top four reasons why people choose physician-assisted suicide, they choose it for things like loss of autonomy and dignity. Pain isn't even in the top four. So, it's my feeling that, you know, if people need support, that I'm not buying into the fact that needing support means you don't have dignity and that needing support means that you should end your life.
COLLINS-IHRKEPeople with disabilities can and do overcome barriers, and much of the work that takes place at the organization I work for (unintelligible). So, I think we need to shift that conversation to getting people who have support needs, adequate resources to have their needs met.
NNAMDIWe asked Senator Waldstreicher to respond to this issue of improving access to end-of-life care versus legalizing physician aid in dying, as well. This is what he told us.
WALDSTREICHERWe can both improve equity and outcomes in healthcare, especially when it comes to poor people and people of color, improve palliative care and hospice care, while at the same time providing the option of medical aid in dying for those few people who want to use it.
NNAMDIAlso joining us in studio is Sarah Farr, and I mentioned earlier, founder and director of Death Positive D.C. Sarah, we got an email that says: it's important to note that palliative medicine and hospice care can help reduce or eliminate suffering at the end of life, and extraordinary life-ending measures are usually not merited. The physician-assisted suicide bills have major flaws, including there are no safeguards that can truly protect against the coercion and abuse of vulnerable populations. There is no legislative solution to the fact that doctors cannot accurately predict a six-month terminal diagnosis.
NNAMDISarah, in many cases, the difficulty of dealing with the reality of death comes from not talking about it. You personally believe that people should have the right to choose how they die, and you specialize in helping people talk about dying at death café. Tell us what exactly happens at a death café.
FARROkay. A death café is a gathering of people, usually strangers, who get together to talk about death. And there's a couple of things that make death cafés special. One is that you always have tea or coffee, and you get to eat desserts while you talk. The other is that there's no agenda or theme to the meeting. The conversation is driven by whatever the participants want to talk about. So, there's no information given out. When I'm hosting one, I'm not trying to convince anyone of any position around death. It's just an organically unfolding conversation about death.
FARRSo, the topics range a lot from -- sometimes we talk about end-of-life plans. Do we want to have a funeral? What kind of burial what we want to have? We talk about green burials, home funerals. Sometimes we talk about end-of-life documents. That's do you have a will? Do you have an advanced directive? Why or why not? Why are those things important? We talk about how do you talk to your family about these issues. So, there's a lot to cover. Death is a huge, sprawling topic.
NNAMDIThere are several death cafés throughout this region. Why do you think they're growing in popularity?
FARRI think people are becoming more and more open to talking about death. I think there's a lot of reasons why they're growing. One, more people are offering them. And, if you offer them, people will come. I have personally experienced that. I've been hosting them for over three years now. I always have really good attendance at my death cafés. There are many other people in D.C., Northern Virginia, Maryland who are hosting death cafés on a regular basis.
FARRI also think, as we have national conversations about things like right-to-die laws, those issues push forward conversations about death. And also, with baby boomers becoming a larger part of the population, that change in demographics is also going to create more conversations around death.
NNAMDIAllow me to go to the phones. Penelope in Bethesda, Maryland. You're on the air, Penelope. Go ahead, please.
PENELOPEHello. This is a very, very difficult subject, obviously, for everybody, but one that hits very close to home for me. The issue that has been raised is that medical progression has gotten so far. And our goal is to prolong everyone's life, but yet that entails, of course, the fact that there could be situations where people's lives have been prolonged, or they have been resuscitated, or whatever the case may be. And then they subsequently end up suffering from something else.
PENELOPESo, for me, the issue is very spiritual. It has to do with some person's point of view and outlook on life and what their point of life and their life on earth here is. The whole subject has to do with one's belief. We're no more asked if we want to be born no more than we are asked if we want to die. It's really not our choice. And the old adage that whatever doesn't break me or kill me makes me stronger, it sounds very trivial, because that has to do with, you know, things on a daily life. But it also has to do with the things and trials and tribulations that we're given in our lives, difficulty.
PENELOPEThey are basically, I mean, in my view, based on my belief and my spiritual belief in my life, it has to do with their gifts that are given to us to grow and to mature. And it's an opportunity for us, and we get to choose whether we run from it or whether we embrace it and the person that we love. I personally have a father who was resuscitated from anoxia. It damaged the frontal part of his brain. We have been blessed by his resuscitation and the fact that he stayed with us, because frankly, I was not prepared for his death at the time.
PENELOPEHowever, I do have to admit this very important fact that now he has gotten into a sudden dementia. And from my readings and from speaking with doctors, I have been told that that is a direct effect or result of somebody who...
NNAMDI(overlapping) What would you like to happen with your father now?
PENELOPEIn this point in time, I do admit, it's a great struggle, because I also have a mother who is dealing with massive issues with her legs, which again has to do with helping people in their medical state...
NNAMDI(overlapping) I know, but we don't have a great deal of time. What would you like to happen with your father?
PENELOPEWell, with my father, I want the best for him and whatever I can do for him. It's a very difficult situation, and I can't give you a simple answer.
NNAMDI(overlapping) I raise that issue because we do have Reverend William Lamar in the studio. And she mentioned a lot that this, as far as she is concerned, is a spiritual issue. How do you counsel someone who is either nearing the end of life, or has significant dementia or Alzheimer's?
LAMARSo, someone nearing the end of life who's cognizant of medical realities, the discussion that I have is one around what life is for them. Is their understanding of life as both a biological and a spiritual reality? And if that's the case, when we discuss death, I think we have to expand from a discussion about the individual alone, but we must also talk about the community and how their life either -- if life is prolonged, what will that mean for how they construct meaning?
LAMARSo, for example, I have known persons, my own grandmother who was born in 1909 and died in 1997, who told her children to take her home so that she could die. She was prepared. I think that she had gone through a discernment process, and she was no longer willing to stretch life, because she felt like her purposes had been fulfilled.
LAMARI feel like we go on a journey with persons who are cognizant to allow them to determine how they feel like their quality of life and meaning intersect. For people who have Alzheimer's and other kinds of challenges where they're not cognizant, I enter into conversation with their families. And, really, those conversations, Kojo, are about the family's willingness to let the person "go," quote-unquote, if there is no more real medical option to keep them viable.
LAMARAnd I think a bigger point for us is, what is life? Is our goal to live for as long as possible with medical intervention, or is there a time when life should sunset? I think, from our own stories, there are many examples in our community where persons would sing, “before I'll be a slave, I'll be buried in my grave.” But there is something more meaningful than accumulating minutes, hours, days, months, years. And I think that we have to be clear that we hold a space for those richer conversations. And that's what I try to do.
NNAMDI(overlapping) We got six minutes left to go on the program, and Reverent William Lamar raises the question: what is life? We could be hours here (laugh) discussing what is life. So, let's go to John, in Silver Spring, Maryland. John, your turn.
JOHNHi, there. I want to get back to the point that you mentioned earlier about doctors not being able to accurately predict a six-month terminal diagnosis.
JOHNYou were talking with Diane earlier about stories. My story is that my brother-in-law was given less than six months to live, and that was a decade ago. He's alive and well a decade later. The other thing is that the idea of there's no option of evaluating whether a person requesting to die is suffering from depression or is feeling pressured to end his or her life because they feel like they are a burden on their family, and not because of particular pain and the like.
NNAMDIKatie Collins-Ihrke, is that your concern, of what can happen to people with disabilities?
COLLINS-IHRKEAbsolutely. I think that, you know, particularly, people don't have the proper support, they can begin to feel like they're a burden to their family or whoever their support system is. And there's definitely a power differential there when someone's making sure that all your needs are met. And there's potential for coercion in these relationships. So, I do believe that's an issue.
COLLINS-IHRKEAnd, you know, to further -- to talk about John's point, you know, the life expectancy, there's the six months terminal illness standpoint, you know, I have many friends with disabilities who have also been given that same “you got six months to live,” and they've continued on and on and on. And those are the people that I worry about that, you know, this could really be , well, not just life-changing, but life-ending for.
NNAMDII'd like to ask all of you about this, but I'll start with you, Katie Collins-Ihrke. Talking about death seems to be one of the lingering social taboos. Do you think it's important for families to have these conversations?
COLLINS-IHRKEWell, yes, I do. I'm going through something, you know, with my father right now. And I do feel that these are conversations that need to be had and people need to be aware of what everyone's wants and needs are as you near that point. But also, people need to feel like they have the support that they need to get there once the need's met. And I think that's the part in our society that we're not doing a great job with. So, you know, I'd love to see some legislation about that.
NNAMDIReverend William Lamar, I'm sure that a lot of your congregants come to you with these conversations, but are they having these conversations among themselves, among the families themselves? And do you counsel them to do that?
LAMARYes, sir. We cannot deny the reality of death in the congregation. Right now, I have five families who are dealing with death. And so we talk about it. We encourage one another. My parents are listening in Florida, and they have pulled their three children together to discuss their wishes, and I'm grateful for that.
LAMARI think really talking about that, preparing for it is a great act of love for those whom you leave behind. And I really believe that it's necessary to have the conversation, especially in a culture like ours which pedals a narrative that life is endless. Philosophers say that if life were forever, it would lack meaning. So, our mortality, as painful as it is, it allows us to, in the words of scripture, to number our days and hopefully apply our hearts to wisdom.
NNAMDISame question to you, Sarah Farr.
FARRYes. I think these conversations are so important to have. And through this Death Positive group and through doing death cafés, I've seen how many people have a really hard time talking to their family and friends about this. So, as individuals, we need to be mindful of our own mortality and think about what we might want at the end of our lives. And then we have to convey that information to our family and friends so they know what we want, because sometimes what's missing is that lack of communication.
NNAMDIHere is Chris in Woodbine, Maryland. Chris, you're on the air. Go ahead, please.
CHRISHi, Kojo. My father, he had Parkinson's and other chronic issues, and he always had believed in the right to die, and he had plans for his own -- what he called -- self-determination. One of the problems was our family couldn't and sort of didn't want to get involved. It was a very tricky situation. And he actually had a friend who wanted to help him who offered to be there with him. But, again, this is illegal, so as his family, we advised him to advise his friend not to do that.
CHRISAnyway, when the time came, he ended up having a botched suicide. He went into his garage, so he wouldn't make a mess in his house and leave a mess for us. He took his pills that he had stockpiled. And, you know, not only did he have to do this all alone, but he laid there for up to two days on the cold garage floor.
NNAMDIWe don't have a lot of time left. What eventually happened with your father?
CHRISOkay. Eventually, he got taken to the hospital, despite the fact that he had a pulsed order in his home, which is a physician's order for life-sustaining treatment, which is something you post and say, do not resuscitate kind of thing. Fortunately, he had gotten far enough along, I guess, in his pill taking that...
NNAMDIOkay. And we only have about 15 seconds left.
CHRIS...they withheld water and, you know, food and drink from him. He ended up in hospice for a week...
CHRIS...at which time he died.
NNAMDIOkay. Thank you very much for sharing that with us. I said we don't have a great deal of time left. Death Positive D.C. has some events coming up where people can come and talk about death and dying, one on February 22nd at Rhizome in D.C. Another on February 29th at Rhizome in D.C., also. And March 16th, a death café there. So, Sarah Farr, thank you so much for joining us.
FARRYeah, thank you.
NNAMDIKatie Collins-Ihrke, thank you for joining us.
COLLINS-IHRKEThank you so much, Kojo.
NNAMDIReverend William Lamar is the pastor of Metropolitan African Methodist Episcopal Church in D.C. You told Diane Rehm, I want to die easy, when I die.
LAMARYes, that's a song we used to sing. Thank you, Kojo.
NNAMDIThank you so much for joining us. Today's show was produced by Ashley Lisenby. Get ready for the next Kojo in Your Community conversation. We'll talk about changing immigration rules and their impact on local students and families. It's on February 25th at the Columbia Heights educational campus. Learn how to get tickets and more at kojoshow.org.
NNAMDIJohn us tomorrow, when we talk about the Washington Metropolitan Opportunity Academy. It's slated to close, but what will happen to its students? Plus, military families at Fort Meade are suing their landlords over mold, pests and rotting wood. Will anybody be held accountable for substandard military housing? That all starts tomorrow ,at noon. Until then, thank you for listening. I'm Kojo Nnamdi.
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