This is such a hard conversation, because watching my grandmother live as a shell of herself for so many years when I know she would rather have died was awful. It has traumatized my whole family. My father talks about going into the woods with some pills if he begins to develop the same dementia symptoms. Because he doesn’t want to live through it like she did and there is no option for him to end it. Even in Canada, dementia isn’t terminal enough until you’re not legally capable of making the decision anymore.
This episode (and all the comments which I read after listening to the episode as well as the follow-up on Tuesday's episode) have all been a further deep dive into my own thoughts on this subject.
4.5 years ago, I lost my best friend after a 5 year battle with an incredibly rare form of cancer that had been diagnosed terminal from the beginning. She chased treatments over the years which gave us extra time with her, but 5 months before she passed, the doctors told her there were no other options out there to slow the progression of her disease. One of her best friends had been very very active with organizations working to legalize MAID and I believe that C would have been in favor of this but chose not to exercise her right to it for whatever reason (it is legal in the state that she was living). Being with her for those last few months was incredibly hard as a loved one and even worse as the patient. Suffering was significant and in a lot of ways, the evening she passed felt like the exhale of a breath that we had been holding for months.
Watching her go through this experience has forever colored my perspective on death. My husband was diagnosed with stage 4 lung cancer in October 2023 - it came out of nowhere. He passed away 32 days after his diagnosis, 2 days after getting his first chemo treatment. While I knew that he was VERY unlikely to survive the cancer (1 year survival rates are single digits and he was never the best case scenario), his passing was much faster than any of us anticipated, even the physicians, and yet I'm so grateful. He got the best death that I could have asked for him - never went through painful radiation, not suffering through futile chemo treatments, just a quick cardiac arrest and gone. I wish that we had had more time to work through his diagnosis together. I don't know that he understood the gravity of the diagnosis at the time and we hadn't even gotten as far as discussing timelines with the oncologist - she and I talked about that afterwards and she said it would have been something that we talked about after the first course of chemo and scans, but she didn't want to take away all hope right from the beginning and it was just so unexpected that he would pass that fast.
Yet, I'm still grateful. Knowing my husband, he would have gotten so angry at life, God, everything, if he had realized what his diagnosis meant. Even if he had survived, he would not have been able to live the life that he wanted. I wonder if he would have been interested in MAID if we had gotten that far, and I'll never know. Working in the medical field for 17 years, I've seen so many times what others have - we are able to extend life far beyond the bounds of what we probably should. I'm grateful for the people out there who are fighting to extend these rights to all eligible people.
I am very late to this discussion since I’m just now listening - not even at half way point. And I’m sure lots of comments clarifying that not feeding at end of life is not “starving”. I work with palliative physicians who are generous in their work and I wish a palliative physician would have been consulted for this episode. They know the laws, the human body, and they debate the ethics every day.
I so appreciate you having this conversation. I’m in that 70% that doesn’t want to think or talk about death but I found this so valuable and grounding, in a way. Thank you for doing the hard things. Also, I loved a conversation that was real and thoughtful and had nothing to do with Trump. I’ll take more of those!
I just finished Dr Mannix's book With the End in Mind and would highly recommend it (picked it up after hearing her on Kate Bowler's podcast). It's a broader overview of death, patterns of what it can look like, and how we all deal with it differently.
One of the things that really hit for me even from the start is how removed most of us are from the process in general now, and where that increases fear and suspicion. It also has some very moving stories (bring your Kleenex!) of how individuals grappled with acceptance and working with UK hospice/palliative care in ways that preserved agency.
This was a really great episode. My mother cared for her mother and older sister. She dedicated the good years of her retirement to it…to the tune of about 15 years. 10 of those years.my grandma didn’t really know where she was…who we were and what was right in front of her. Mom started that time of caregiving full of life, healthy and vibrant. Now she walks with a cane, is very overweight and has many physical limitations from her own aging and from the physical nature of caring for adults. The isolation. More than once she’s mentioned her wish to choose when she goes to me. There’s a reason people say they feel relieved when a family member dies sometimes. It’s not cruel. It’s natural. Caregiving can be gratifying and a real honor, but it’s no picnic. Mom did it for love and because no one else would, but It has lasting ramifications. There is a cost, a lot of sacrifice and a lot of time to soul search.
One point that I think doesn't get mentioned a lot is that as people are living longer, the children of the elderly are themselves older than they would have been in past generations and starting to grapple with aging themselves.
My mother had said for years that she wanted to live to 90, but she died at 81. If she'd made it to 90, I would have been into my 60s when she died. The last two years of her life were pretty rough because of her dementia and chronic pain, and looking ahead to 10 more years like that absolutely wiped me out mentally. I was caregiving long-distance and not doing the hands-on day-to-day work so many do, but the mental and emotional load of managing her care affected my work life in some serious ways, and it would only have gotten worse if it had continued.
So, yeah, I was grateful when she passed--for her and for me.
And caregiving an elder is very different from caregiving a baby. With a baby, you know they're going to become more independent. Caregiving an elder means you know the burden will get worse. (This is one reason comments like "I wiped your butt, I expect you to wipe mine" can be sort of ... off. It's just not the same.)
I am the middle of this as we speak. Dad had heart surgery Mom is out of physical ability to care for the sick so I spend a lot more time caregiving and traveling. I’m in the middle of trying to establish myself at a new job. Also going through a divorce. It’s a lot. And I worry about how I will be perceived at my job which is a lot more important now that I am a single income in a high cost of living area. But…this is life. It’s hard sometimes and I have to power through. Helps to know others have gone through similar. I feel guilty for my feelings sometimes.
Whew, this was not an easy episode and wading through these comments has been likewise heavy. I so appreciate the vulnerability present in this community, and Sarah & Beth’s willingness to come join us in this very messy middle. I’m just grateful for the wealth of experience and perspective I gained through these comments.
My sister was a health care provider in an ICU during COVID, and experienced horrific things. So all of you here that deal with death every day, or even on occasion. Thank you for this service of bestowing dignity on another human.
I think my biggest struggle with this conversation is that if I sub "abortion" into these talking points, you'd hear a decisive pro-life take. I know that I shouldn't compare the two because they are different, but it's hard to *not* hear the conflict there. Bodily autonomy, personal choice, nuance in circumstance..... all pro-choice arguments. But, it seemed like the opposite for the discussion here. Anyone else feel this? Can someone provide some clarity so that I can sort this out in my head?
Something I think about with this conversation of death is that we have the medical technology to keep people alive much longer than would otherwise have been possible even a decade ago. Some of these technologies are live saving and beautiful but some cause/prolong suffering and create even more morally complex decisions. And just because we have access to them doesn’t mean we (or our families) can actually afford them, which creates a whole other set of decisions and suffering.
Just like we haven’t done a great job of discussing the ethics of death with dignity, I’m not sure we as a society have taken the time to discuss if all the technology and interventions we’ve made to prolong life at all costs is ethical or if it offers the dignity we intend.
I agree with this wholeheartedly. My husband is a physician who doesn't deal with end of life care very much, but he is adjacent enough to have seen how it can go quite badly.
I have a lot more to say about the IVF piece, but I have major concerns with your comments about restricting fertility treatments due to the Gattaca wannabe bad actors. I fear that focusing too much on the small number of entitled myopic folks abusing these treatments will serve only to do to ivf what was done to abortion: some people are using it in shitty ways for shitty reasons so now no one should get to do it ever.
Every time I comment on this topic, I feel compelled to write these words: MY CHILDREN WOULD NOT EXIST WITHOUT IVF.
People using IVF for legitimate fertility reasons often have legitimate reasons for genetic testing: primarily that bloodwork has identified factors that make it likely that embryos will result that are substantially likely to result in miscarriage/stillbirth/diseases that are not compatible with life; these tests are also done on embryos when a woman has experienced multiple miscarriages or stillbirths.
The reality, Sarah, is that embryos identified as having Down syndrome or other chromosomal abnormalities are significantly more likely to result in miscarriage. And you simply cannot blame any woman/couple for choosing the option that has the greatest chance of giving them a baby.
I personally would have no problem with drs and labs not giving couples the Information about embryo gender when they provide these reports—but again that information is Included because there are diseases and conditions that sometimes differ from male vs female embryos.
My personal opinion is that this is an issue for the association of reproductive endocrinologists to contend with as a matter of patient care. The reality is that REs can turn away patients—which means any given practice could have a policy that they do not accept patients pursuing ivf electively, and focus their practice solely on actual infertile people/couples. (I include same sex couples in this bucket, as conception is impossible for these folks without technology). Frankly, every time an RE accepts a patient for voluntary ivf for gender selection etc, they are allowing that person to take a “spot” that could have gone to a person in need. The process of ivf is time involved and extensive and no practice has an unlimited capacity for taking on patients for these treatment cycles.
I would have no problem with rules in greater restriction on when genetic testing of embryos will be performed (it’s incredibly expensive add on to ivf. Costing thousands per embryo—I was already in for $30k and opted against it as we had no reason to think there were genetic issues and I had no history of miscarriage).
But there are valid reasons for genetic testing in the context of reproductive technology. AND there are perverse incentives for REs to take on healthy patients for elective care: they are judged based on their success rate. So a struggling practice, a dr who maybe isn’t great at getting infertile women pregnant, could potentially help their practice by taking on young healthy clients who are likely to get pregnant and likely to have live birth, as opposed to a 38 year old woman with 4 miscarriages.
The only answer then seems to be to pressure the field of RE itself to have increased conversations about resources and ethics, to change the way the data is reported to erase the backward incentives, and to clearly send a message to patients and the public that they are on top of ensuring they are striving for the greatest highest version of ethics in this area.
If you have a moment, I'm not sure how to search for what I want to ask: do you know where to find more information about genetic testing in the different scenarios you mention? (for example, women who miscarry multiple times)
It’s been over a decade since I did ivf, so I’m certain the tech and the justifications have shifted, but I’m happy to be your research Sherpa in this area to the extent I can. I would really love Beth and Sarah to have a reproductive endocrinologist and embryologist on the show some time—think it could be an incredibly valuable conversation for the community.
This was largely anecdotal (I know an alarming number of women who have done ivf due to recurrent miscarriages), but a quick google shows quite a bit of research on this area in the last decade. Here’s one such research article: https://pmc.ncbi.nlm.nih.gov/articles/PMC8315809/
Thanks for the help! This is interesting. I have only known of genetic testing for IVF, fetal anomalies, and testing for specific diseases after birth. But if I understand correctly, it's pretty expensive. I have a couple of friends who were referred to geneticists after getting ultrasounds, but they didn't do it because they couldn't pay for it. This was a while ago though.
I want to be clear I never said we should restrict IVF. I can have ethical concerns about all manner of medical technologies without wanting the government involved.
Thanks for the clarification. I think I drew that conclusion based on your statement that you agree with the Catholic Church about ivf (I have devout Catholic friends who have had to hide IVF treatments from friends, family, and their priests/congregations due to the church’s positions opposing ivf).
I feel an inherent tension in the current political climate between wanting to have conversations about ethics (see my detailed breakdown above, where you can see I have concerns and issues too) and feeling like any conversation about a small subset of bad actors in voluntary medical procedures will lead a certain influential subset of the populace/leaders to conclude that the entire system is unethical and must be abolished.
So for people like you and I, I guess the question is … how do we do this? How do we have these conversations more broadly without having our concerns and positions twisted and exploited by political actors or lobbying/interest groups perverting those legitimate concerns into talking points for an extremists agenda? I’m struggling here, to know what’s next, how to not cause more harm, so I find myself routinely just keeping my mouth shut.
This conversation pushed up against a lot of different tender places in my life and soul. I need some time to process most of them, but for now, I offer this point of resistance. About a year ago, my mother in law, who had been diagnosed with Alzheimer’s about 18 months earlier was diagnosed with acute and aggressive leukemia. Her pain was intense; her hospital experience disorienting; her hospice experience at home somewhat disappointing. There were hours and moments of lucidity. But mostly she was incredibly confused. She was given 2-4 weeks to live; The cancer ran through her body, and she died 8 days later (once she had stopped eating or drinking for a couple of days).
There would not have been time for 3 days of waiting without significantly increasing pain. And even if there had been, her Alzheimer’s makes it unlikely that she could have had consistent conversations about consent in the moment.
Does it seem right and just that someone with the same cancer, the same pain, the same outcome would have the option for choosing to expedite their death and release from suffering but while she would not? I personally think no. But as an attorney and a person with multiple chronic and degenerative autoimmune diseases, I also believe wholeheartedly in the concept of medical consent.
Why then could we not, as a society, define the contours of when assisted death is acceptable and then allow people to make their choices about the scenarios within that zone of acceptability as part of their living will/medical durable power of attorney/etc? This would encourage a level of thought and hard but productive dialogue with loved ones before you are ever in the position to have to make those decisions. It might also allow a swifter end with dignity in those situations like hers where the decline and pain of death increases exponentially in a period of 3 days.
I agree. And since listening to this episode I've been thinking about the line between "don't save me" and "let me decide to die." Is this a false dividing line? If a living will can give instructions for not provide care, why doesn't it give instructions for ending life?
Started the episode. Started to feel icky. Came to the comments. Hope to return to the episode. But not today…
As the daughter of someone who died by suicide after years of battling bipolar disorder and the wife of a 40-year-old man who was recently diagnosed with ALS, I’ve done a lot of thinking about pro-choice death. The end is known, but the timeline is not—and there is a whole lot of indescribable suffering along the way. I don’t want the government making these kinds of choices for me and my loved ones.
While my husband has a lot to live for right now, he has also been conditioned that his value is in his independence, and losing his independence is going to be truly traumatic and horribly life-changing for him, me, and our two young children. I’m also reading daily stories about CALS (caregivers for people with ALS), who have lost careers, health, friends, “lives” in decades-long caregiving responsibilities. There simply aren’t systems currently in place that support this level of care… for the PALS (person with ALS) or the CALS. And, that is a burden for people in both roles. If the systems were better suited for these situations, I might have a different perspective.
Given that reality though, I want my husband to have a choice about the way he dies, so that he has a choice about the way he lives. (But we also live in South Carolina, so I’m not betting that MAID will become available in my lifetime, and certainly not in his.)
I’m grateful for the conversation here because I always want to keep an open mind, and it helps me prepare for conversations that I expect are in my future.
Sorry, but this is going to be a long post. The podcast just generated a lot of thoughts, but I know that was your intent
My grandmother had Alzheimers for many many years and I watched my mom as she struggled to take care of her mom. I watched the toll it took on my mom physically, and I watched the toll it took on her emotionally as she watched the mom she knew disappear.
I don’t want that for my kids. I disagree that these laws should be based on just terminal illnesses and not mental ones. I do think that at a time when I have the mental capacity to make these decisions, I should be able to make this decision for the time when I don’t have the mental capacity. My mom watched her mother, who was an amazing trailblazer- going to college at a time when women were rarely going to college, becoming a teacher, becoming a community leader - turn into a child, an angry child. She became an angry person. She forgot who she was, she forgot where she came from, she forgot my mom. My mom is petrified that that’s what’s going to happen with her. She doesn’t want that for my sisters and I and I don’t want that for my kids. So I know what her wishes are. My kids know what my wishes are.
When we got married my husband and I agreed that at a certain age we were gonna have a big party, say goodbye to all our friends and family and go up to our bedroom and take some poison and die. We agreed that we do not want to reach a point in our lives where our kids had to be burdened by us. Now, I will say, as I get older that age is getting pushed back because of our own health and longevity. I am doing what I can to stay physically strong so I can live a long life for my children. But you don’t die from Alzheimer’s. My grandmother was very healthy, which is why she lived with Alzheimer’s for so many years. I should be able to make the decision that when I have forgotten all things that were important to me I can leave this world. Then the memories my children will have of me will be who I really was not who that disease made me to be.
So to me it’s not the physical limitations - if I need someone to wipe my butt but i still know who my daughter is, if I can still have a political conversation with my son, then i’m good. I will go the way God wants. But if I’m brain dead, keep me alive just long enough to harvest as many of my organs for donation as you can. And if I have dementia or Alzheimers, please say goodbye to me when i still know who you are and then let me pass and make my peace with God.
Yes to all of this! This is so similar to my story as well & I agree that we need to reach some sort of consensus about giving advanced consent for assisted death. Three of my four grandparents lived into “old, old age” (yes, this is the technical term in social sciences) and all ended up with some form of dementia. None of them would have been pleased with their eventual deaths - not knowing their friends and family, not able to eat solid food or participate in any semblance of community life or family interaction - essentially locked in their bodies while their brains lost function after function after function.
As I think about the possibility of my own death proceeding in a similar fashion, I know it’s not what I want, but I also don’t want to unnecessarily foreshorten my good functioning by having to act when I am still “of sound mind.” If I could choose, I’d want to go when music no longer made me happy or when I actually forget how to chew and swallow - both points that tend to be well beyond being “of sound mind.”My grandparents had some quality of life up to those points - beyond, it was just existence and they had all previously made clear that they didn’t want that type of life.
To speak to another issue raised in this episode, I loved this quote from the last paragraph of a NyT article about RFK’s remarks:
Marianne Eloise, 32, was stunned by Mr. Kennedy’s remarks, especially his comment that autistic people would never write a poem. Ms. Eloise, who is autistic, is herself a published poet.
“I would love to read R.F.K.’s poetry, if he could share it,” she said. “I’m not familiar with his work.”
This is such a hard conversation, because watching my grandmother live as a shell of herself for so many years when I know she would rather have died was awful. It has traumatized my whole family. My father talks about going into the woods with some pills if he begins to develop the same dementia symptoms. Because he doesn’t want to live through it like she did and there is no option for him to end it. Even in Canada, dementia isn’t terminal enough until you’re not legally capable of making the decision anymore.
This episode (and all the comments which I read after listening to the episode as well as the follow-up on Tuesday's episode) have all been a further deep dive into my own thoughts on this subject.
4.5 years ago, I lost my best friend after a 5 year battle with an incredibly rare form of cancer that had been diagnosed terminal from the beginning. She chased treatments over the years which gave us extra time with her, but 5 months before she passed, the doctors told her there were no other options out there to slow the progression of her disease. One of her best friends had been very very active with organizations working to legalize MAID and I believe that C would have been in favor of this but chose not to exercise her right to it for whatever reason (it is legal in the state that she was living). Being with her for those last few months was incredibly hard as a loved one and even worse as the patient. Suffering was significant and in a lot of ways, the evening she passed felt like the exhale of a breath that we had been holding for months.
Watching her go through this experience has forever colored my perspective on death. My husband was diagnosed with stage 4 lung cancer in October 2023 - it came out of nowhere. He passed away 32 days after his diagnosis, 2 days after getting his first chemo treatment. While I knew that he was VERY unlikely to survive the cancer (1 year survival rates are single digits and he was never the best case scenario), his passing was much faster than any of us anticipated, even the physicians, and yet I'm so grateful. He got the best death that I could have asked for him - never went through painful radiation, not suffering through futile chemo treatments, just a quick cardiac arrest and gone. I wish that we had had more time to work through his diagnosis together. I don't know that he understood the gravity of the diagnosis at the time and we hadn't even gotten as far as discussing timelines with the oncologist - she and I talked about that afterwards and she said it would have been something that we talked about after the first course of chemo and scans, but she didn't want to take away all hope right from the beginning and it was just so unexpected that he would pass that fast.
Yet, I'm still grateful. Knowing my husband, he would have gotten so angry at life, God, everything, if he had realized what his diagnosis meant. Even if he had survived, he would not have been able to live the life that he wanted. I wonder if he would have been interested in MAID if we had gotten that far, and I'll never know. Working in the medical field for 17 years, I've seen so many times what others have - we are able to extend life far beyond the bounds of what we probably should. I'm grateful for the people out there who are fighting to extend these rights to all eligible people.
I am very late to this discussion since I’m just now listening - not even at half way point. And I’m sure lots of comments clarifying that not feeding at end of life is not “starving”. I work with palliative physicians who are generous in their work and I wish a palliative physician would have been consulted for this episode. They know the laws, the human body, and they debate the ethics every day.
I so appreciate you having this conversation. I’m in that 70% that doesn’t want to think or talk about death but I found this so valuable and grounding, in a way. Thank you for doing the hard things. Also, I loved a conversation that was real and thoughtful and had nothing to do with Trump. I’ll take more of those!
I just finished Dr Mannix's book With the End in Mind and would highly recommend it (picked it up after hearing her on Kate Bowler's podcast). It's a broader overview of death, patterns of what it can look like, and how we all deal with it differently.
One of the things that really hit for me even from the start is how removed most of us are from the process in general now, and where that increases fear and suspicion. It also has some very moving stories (bring your Kleenex!) of how individuals grappled with acceptance and working with UK hospice/palliative care in ways that preserved agency.
This was a really great episode. My mother cared for her mother and older sister. She dedicated the good years of her retirement to it…to the tune of about 15 years. 10 of those years.my grandma didn’t really know where she was…who we were and what was right in front of her. Mom started that time of caregiving full of life, healthy and vibrant. Now she walks with a cane, is very overweight and has many physical limitations from her own aging and from the physical nature of caring for adults. The isolation. More than once she’s mentioned her wish to choose when she goes to me. There’s a reason people say they feel relieved when a family member dies sometimes. It’s not cruel. It’s natural. Caregiving can be gratifying and a real honor, but it’s no picnic. Mom did it for love and because no one else would, but It has lasting ramifications. There is a cost, a lot of sacrifice and a lot of time to soul search.
One point that I think doesn't get mentioned a lot is that as people are living longer, the children of the elderly are themselves older than they would have been in past generations and starting to grapple with aging themselves.
My mother had said for years that she wanted to live to 90, but she died at 81. If she'd made it to 90, I would have been into my 60s when she died. The last two years of her life were pretty rough because of her dementia and chronic pain, and looking ahead to 10 more years like that absolutely wiped me out mentally. I was caregiving long-distance and not doing the hands-on day-to-day work so many do, but the mental and emotional load of managing her care affected my work life in some serious ways, and it would only have gotten worse if it had continued.
So, yeah, I was grateful when she passed--for her and for me.
And caregiving an elder is very different from caregiving a baby. With a baby, you know they're going to become more independent. Caregiving an elder means you know the burden will get worse. (This is one reason comments like "I wiped your butt, I expect you to wipe mine" can be sort of ... off. It's just not the same.)
I am the middle of this as we speak. Dad had heart surgery Mom is out of physical ability to care for the sick so I spend a lot more time caregiving and traveling. I’m in the middle of trying to establish myself at a new job. Also going through a divorce. It’s a lot. And I worry about how I will be perceived at my job which is a lot more important now that I am a single income in a high cost of living area. But…this is life. It’s hard sometimes and I have to power through. Helps to know others have gone through similar. I feel guilty for my feelings sometimes.
Whew, this was not an easy episode and wading through these comments has been likewise heavy. I so appreciate the vulnerability present in this community, and Sarah & Beth’s willingness to come join us in this very messy middle. I’m just grateful for the wealth of experience and perspective I gained through these comments.
My sister was a health care provider in an ICU during COVID, and experienced horrific things. So all of you here that deal with death every day, or even on occasion. Thank you for this service of bestowing dignity on another human.
That’s all I came here to say. 💗
I think my biggest struggle with this conversation is that if I sub "abortion" into these talking points, you'd hear a decisive pro-life take. I know that I shouldn't compare the two because they are different, but it's hard to *not* hear the conflict there. Bodily autonomy, personal choice, nuance in circumstance..... all pro-choice arguments. But, it seemed like the opposite for the discussion here. Anyone else feel this? Can someone provide some clarity so that I can sort this out in my head?
Something I think about with this conversation of death is that we have the medical technology to keep people alive much longer than would otherwise have been possible even a decade ago. Some of these technologies are live saving and beautiful but some cause/prolong suffering and create even more morally complex decisions. And just because we have access to them doesn’t mean we (or our families) can actually afford them, which creates a whole other set of decisions and suffering.
Just like we haven’t done a great job of discussing the ethics of death with dignity, I’m not sure we as a society have taken the time to discuss if all the technology and interventions we’ve made to prolong life at all costs is ethical or if it offers the dignity we intend.
I agree with this wholeheartedly. My husband is a physician who doesn't deal with end of life care very much, but he is adjacent enough to have seen how it can go quite badly.
I have a lot more to say about the IVF piece, but I have major concerns with your comments about restricting fertility treatments due to the Gattaca wannabe bad actors. I fear that focusing too much on the small number of entitled myopic folks abusing these treatments will serve only to do to ivf what was done to abortion: some people are using it in shitty ways for shitty reasons so now no one should get to do it ever.
Every time I comment on this topic, I feel compelled to write these words: MY CHILDREN WOULD NOT EXIST WITHOUT IVF.
People using IVF for legitimate fertility reasons often have legitimate reasons for genetic testing: primarily that bloodwork has identified factors that make it likely that embryos will result that are substantially likely to result in miscarriage/stillbirth/diseases that are not compatible with life; these tests are also done on embryos when a woman has experienced multiple miscarriages or stillbirths.
The reality, Sarah, is that embryos identified as having Down syndrome or other chromosomal abnormalities are significantly more likely to result in miscarriage. And you simply cannot blame any woman/couple for choosing the option that has the greatest chance of giving them a baby.
I personally would have no problem with drs and labs not giving couples the Information about embryo gender when they provide these reports—but again that information is Included because there are diseases and conditions that sometimes differ from male vs female embryos.
My personal opinion is that this is an issue for the association of reproductive endocrinologists to contend with as a matter of patient care. The reality is that REs can turn away patients—which means any given practice could have a policy that they do not accept patients pursuing ivf electively, and focus their practice solely on actual infertile people/couples. (I include same sex couples in this bucket, as conception is impossible for these folks without technology). Frankly, every time an RE accepts a patient for voluntary ivf for gender selection etc, they are allowing that person to take a “spot” that could have gone to a person in need. The process of ivf is time involved and extensive and no practice has an unlimited capacity for taking on patients for these treatment cycles.
I would have no problem with rules in greater restriction on when genetic testing of embryos will be performed (it’s incredibly expensive add on to ivf. Costing thousands per embryo—I was already in for $30k and opted against it as we had no reason to think there were genetic issues and I had no history of miscarriage).
But there are valid reasons for genetic testing in the context of reproductive technology. AND there are perverse incentives for REs to take on healthy patients for elective care: they are judged based on their success rate. So a struggling practice, a dr who maybe isn’t great at getting infertile women pregnant, could potentially help their practice by taking on young healthy clients who are likely to get pregnant and likely to have live birth, as opposed to a 38 year old woman with 4 miscarriages.
The only answer then seems to be to pressure the field of RE itself to have increased conversations about resources and ethics, to change the way the data is reported to erase the backward incentives, and to clearly send a message to patients and the public that they are on top of ensuring they are striving for the greatest highest version of ethics in this area.
If you have a moment, I'm not sure how to search for what I want to ask: do you know where to find more information about genetic testing in the different scenarios you mention? (for example, women who miscarry multiple times)
It’s been over a decade since I did ivf, so I’m certain the tech and the justifications have shifted, but I’m happy to be your research Sherpa in this area to the extent I can. I would really love Beth and Sarah to have a reproductive endocrinologist and embryologist on the show some time—think it could be an incredibly valuable conversation for the community.
This was largely anecdotal (I know an alarming number of women who have done ivf due to recurrent miscarriages), but a quick google shows quite a bit of research on this area in the last decade. Here’s one such research article: https://pmc.ncbi.nlm.nih.gov/articles/PMC8315809/
Also here’s an opinion from the ASRM from last year detailing the merit/necessity of PGT of embryos in a number of scenarios (including sex selection which they note is skewed and describe as concerning). I read this as saying additional data and studies are needed in several areas but that they seem most supportive of the idea that recurrent miscarriages is a beneficial use of this technology https://www.asrm.org/practice-guidance/practice-committee-documents/the-use-of-preimplantation-genetic-testing-for-aneuploidy-a-committee-opinion-2024/
Thanks for the help! This is interesting. I have only known of genetic testing for IVF, fetal anomalies, and testing for specific diseases after birth. But if I understand correctly, it's pretty expensive. I have a couple of friends who were referred to geneticists after getting ultrasounds, but they didn't do it because they couldn't pay for it. This was a while ago though.
I want to be clear I never said we should restrict IVF. I can have ethical concerns about all manner of medical technologies without wanting the government involved.
Thanks for the clarification. I think I drew that conclusion based on your statement that you agree with the Catholic Church about ivf (I have devout Catholic friends who have had to hide IVF treatments from friends, family, and their priests/congregations due to the church’s positions opposing ivf).
I feel an inherent tension in the current political climate between wanting to have conversations about ethics (see my detailed breakdown above, where you can see I have concerns and issues too) and feeling like any conversation about a small subset of bad actors in voluntary medical procedures will lead a certain influential subset of the populace/leaders to conclude that the entire system is unethical and must be abolished.
So for people like you and I, I guess the question is … how do we do this? How do we have these conversations more broadly without having our concerns and positions twisted and exploited by political actors or lobbying/interest groups perverting those legitimate concerns into talking points for an extremists agenda? I’m struggling here, to know what’s next, how to not cause more harm, so I find myself routinely just keeping my mouth shut.
This conversation pushed up against a lot of different tender places in my life and soul. I need some time to process most of them, but for now, I offer this point of resistance. About a year ago, my mother in law, who had been diagnosed with Alzheimer’s about 18 months earlier was diagnosed with acute and aggressive leukemia. Her pain was intense; her hospital experience disorienting; her hospice experience at home somewhat disappointing. There were hours and moments of lucidity. But mostly she was incredibly confused. She was given 2-4 weeks to live; The cancer ran through her body, and she died 8 days later (once she had stopped eating or drinking for a couple of days).
There would not have been time for 3 days of waiting without significantly increasing pain. And even if there had been, her Alzheimer’s makes it unlikely that she could have had consistent conversations about consent in the moment.
Does it seem right and just that someone with the same cancer, the same pain, the same outcome would have the option for choosing to expedite their death and release from suffering but while she would not? I personally think no. But as an attorney and a person with multiple chronic and degenerative autoimmune diseases, I also believe wholeheartedly in the concept of medical consent.
Why then could we not, as a society, define the contours of when assisted death is acceptable and then allow people to make their choices about the scenarios within that zone of acceptability as part of their living will/medical durable power of attorney/etc? This would encourage a level of thought and hard but productive dialogue with loved ones before you are ever in the position to have to make those decisions. It might also allow a swifter end with dignity in those situations like hers where the decline and pain of death increases exponentially in a period of 3 days.
I agree. And since listening to this episode I've been thinking about the line between "don't save me" and "let me decide to die." Is this a false dividing line? If a living will can give instructions for not provide care, why doesn't it give instructions for ending life?
This!!!
Started the episode. Started to feel icky. Came to the comments. Hope to return to the episode. But not today…
As the daughter of someone who died by suicide after years of battling bipolar disorder and the wife of a 40-year-old man who was recently diagnosed with ALS, I’ve done a lot of thinking about pro-choice death. The end is known, but the timeline is not—and there is a whole lot of indescribable suffering along the way. I don’t want the government making these kinds of choices for me and my loved ones.
While my husband has a lot to live for right now, he has also been conditioned that his value is in his independence, and losing his independence is going to be truly traumatic and horribly life-changing for him, me, and our two young children. I’m also reading daily stories about CALS (caregivers for people with ALS), who have lost careers, health, friends, “lives” in decades-long caregiving responsibilities. There simply aren’t systems currently in place that support this level of care… for the PALS (person with ALS) or the CALS. And, that is a burden for people in both roles. If the systems were better suited for these situations, I might have a different perspective.
Given that reality though, I want my husband to have a choice about the way he dies, so that he has a choice about the way he lives. (But we also live in South Carolina, so I’m not betting that MAID will become available in my lifetime, and certainly not in his.)
I’m grateful for the conversation here because I always want to keep an open mind, and it helps me prepare for conversations that I expect are in my future.
Just wanted to share this beautiful poem by Abi Robins: https://open.substack.com/pub/abirobins/p/what-is-death-when-we-live-in-a-garden?utm_source=share&utm_medium=android&r=3glvh
Sorry, but this is going to be a long post. The podcast just generated a lot of thoughts, but I know that was your intent
My grandmother had Alzheimers for many many years and I watched my mom as she struggled to take care of her mom. I watched the toll it took on my mom physically, and I watched the toll it took on her emotionally as she watched the mom she knew disappear.
I don’t want that for my kids. I disagree that these laws should be based on just terminal illnesses and not mental ones. I do think that at a time when I have the mental capacity to make these decisions, I should be able to make this decision for the time when I don’t have the mental capacity. My mom watched her mother, who was an amazing trailblazer- going to college at a time when women were rarely going to college, becoming a teacher, becoming a community leader - turn into a child, an angry child. She became an angry person. She forgot who she was, she forgot where she came from, she forgot my mom. My mom is petrified that that’s what’s going to happen with her. She doesn’t want that for my sisters and I and I don’t want that for my kids. So I know what her wishes are. My kids know what my wishes are.
When we got married my husband and I agreed that at a certain age we were gonna have a big party, say goodbye to all our friends and family and go up to our bedroom and take some poison and die. We agreed that we do not want to reach a point in our lives where our kids had to be burdened by us. Now, I will say, as I get older that age is getting pushed back because of our own health and longevity. I am doing what I can to stay physically strong so I can live a long life for my children. But you don’t die from Alzheimer’s. My grandmother was very healthy, which is why she lived with Alzheimer’s for so many years. I should be able to make the decision that when I have forgotten all things that were important to me I can leave this world. Then the memories my children will have of me will be who I really was not who that disease made me to be.
So to me it’s not the physical limitations - if I need someone to wipe my butt but i still know who my daughter is, if I can still have a political conversation with my son, then i’m good. I will go the way God wants. But if I’m brain dead, keep me alive just long enough to harvest as many of my organs for donation as you can. And if I have dementia or Alzheimers, please say goodbye to me when i still know who you are and then let me pass and make my peace with God.
Yes to all of this! This is so similar to my story as well & I agree that we need to reach some sort of consensus about giving advanced consent for assisted death. Three of my four grandparents lived into “old, old age” (yes, this is the technical term in social sciences) and all ended up with some form of dementia. None of them would have been pleased with their eventual deaths - not knowing their friends and family, not able to eat solid food or participate in any semblance of community life or family interaction - essentially locked in their bodies while their brains lost function after function after function.
As I think about the possibility of my own death proceeding in a similar fashion, I know it’s not what I want, but I also don’t want to unnecessarily foreshorten my good functioning by having to act when I am still “of sound mind.” If I could choose, I’d want to go when music no longer made me happy or when I actually forget how to chew and swallow - both points that tend to be well beyond being “of sound mind.”My grandparents had some quality of life up to those points - beyond, it was just existence and they had all previously made clear that they didn’t want that type of life.
To speak to another issue raised in this episode, I loved this quote from the last paragraph of a NyT article about RFK’s remarks:
Marianne Eloise, 32, was stunned by Mr. Kennedy’s remarks, especially his comment that autistic people would never write a poem. Ms. Eloise, who is autistic, is herself a published poet.
“I would love to read R.F.K.’s poetry, if he could share it,” she said. “I’m not familiar with his work.”
https://www.nytimes.com/2025/04/18/well/autism-kennedy-reaction.html?smid=nytcore-ios-share&referringSource=articleShare
I haven’t read through the comments but I LOVED the book The Collected Regrets of Clover. It’s a story about a death doula.