Leah, I am doing some research using PRAMS and am connected well with the health economist community who study maternal and infant health. If there's anything I can do to help Michael advocate please let me know.
I served as the medical POA for my late grandmother (and will be likely serving soon for my in-laws). There are so many levels of challenge to this role.
Even if you have a high degree of friendship, often understanding what someone else wants for their end of life care is often unclear unless you have very specific, rather morbid conversations. Not everyone wants those, and so you have to navigate around a lot of feelings even to get the jist of what they’d like. Do you want to be intubated? What if it’s just an infection where you have a 50-50 shot at recovery? Often even in the moment the decisions aren’t easy, if the doctors can even give you statistics like this. The more you can discuss these things, the easier it is to be a medical proxy prepared for different options. It can be hard for someone who is nearing the end of life to have those conversations, so it’s better to address them earlier (like 70-75) and write them down than it is to wait until crisis hits. In CA, the recommended form is a POLST. Working on this document is a good excuse to start these conversations, even if it isn’t very robust itself. Some Catholic medical professionals have expressed concern about the POLST, but having any form is better than none. We noted that decision should be made within a Catholic moral framework. It was helpful to have read (and watched YouTube videos) on the subject. I particularly liked Dr. BJ Miller and Shoshana Berber’s book A Beginner’s Guide to the End. Miller is disabled so it made for a particularly interesting perspective.
Even if you have a wonderful doctor who does a great job explaining things, sometimes it’s not clear in the moment how well the patient understands. The elderly - especially if they have any conditions - reach a level where they function more like tweens. They understand quite a lot and can hold a good conversation, but their executive functioning isn’t so strong. You don’t know when they leave a doctor’s office if they will remember an off-handed comment or the main thing they are supposed to remember. In some ways, that’s harder as you have to navigate experiences with them where you both have different recollections of what took place. You have to maintain a high level of trust, despite a significant degree of often unrecognized memory impairment. Sometimes that means walking with them through a degree of unreality. It’s hard to temper one’s own expectations when this happens. It’s also very hard for anyone to go through these dynamics with a parent.
One thing I have observed in many care situations is that grandchildren often have an easier time than children in processing the dynamics. Because they don’t feel the weight of losing a parent, a grandchild feels less emotionally burdened. After all; their grandparent has always seemed older and closer to death. Impairment or disability feels like a more normal state to a grandchild, where a child still remembers when they depended on the parent for everything. It feels more world-shattering to lose a parent. In some ways, giving medical POA to a grandchild (or to the spouse of a child) can relieve some of the stress off one’s own children.
My husband and I do have advanced directives. We have discussed them with our young adult children. I had not thought about a conflict between our preferences and their own internal feelings. I appreciate having that brought to my awareness.
My parents also have advanced directives. My sister is their proxy, as she is local to them and I am not. I am so grateful, though, that they have made their wishes very clear to us. It helps that we mostly share values. It also helps that they are both 80ish, and so I think it would be easier to, say, decline a ventilator now than it would have been 20 years ago.
Neat to see you in the Pillar. I used to read the Pillar but unsubscribed a few years ago because one of the editors (you may know which one) was pretty...militantly pro-life, in a bitter way. I have empathy for him as he was formerly infertile. As someone who has an endocrine syndrome that can compromise my fertility, I understand the envy, although unlike him, I have never tried to conceive. But that doesn't mean I don't wonder what might happen if I *did* try. But I'm glad to see it seems he and his co-editor may have shifted their perspective enough to publish something about Prams and potentially fatal pregnancies...and from someone who publishes their own column with the word "feminisms" in it. Nice job. Maybe one day I'll resubscribe to Pillar if they continue publishing you.
Leah, I am doing some research using PRAMS and am connected well with the health economist community who study maternal and infant health. If there's anything I can do to help Michael advocate please let me know.
Do you want to DM me on substack and I can put you two directly in touch? Thank you!
I served as the medical POA for my late grandmother (and will be likely serving soon for my in-laws). There are so many levels of challenge to this role.
Even if you have a high degree of friendship, often understanding what someone else wants for their end of life care is often unclear unless you have very specific, rather morbid conversations. Not everyone wants those, and so you have to navigate around a lot of feelings even to get the jist of what they’d like. Do you want to be intubated? What if it’s just an infection where you have a 50-50 shot at recovery? Often even in the moment the decisions aren’t easy, if the doctors can even give you statistics like this. The more you can discuss these things, the easier it is to be a medical proxy prepared for different options. It can be hard for someone who is nearing the end of life to have those conversations, so it’s better to address them earlier (like 70-75) and write them down than it is to wait until crisis hits. In CA, the recommended form is a POLST. Working on this document is a good excuse to start these conversations, even if it isn’t very robust itself. Some Catholic medical professionals have expressed concern about the POLST, but having any form is better than none. We noted that decision should be made within a Catholic moral framework. It was helpful to have read (and watched YouTube videos) on the subject. I particularly liked Dr. BJ Miller and Shoshana Berber’s book A Beginner’s Guide to the End. Miller is disabled so it made for a particularly interesting perspective.
Even if you have a wonderful doctor who does a great job explaining things, sometimes it’s not clear in the moment how well the patient understands. The elderly - especially if they have any conditions - reach a level where they function more like tweens. They understand quite a lot and can hold a good conversation, but their executive functioning isn’t so strong. You don’t know when they leave a doctor’s office if they will remember an off-handed comment or the main thing they are supposed to remember. In some ways, that’s harder as you have to navigate experiences with them where you both have different recollections of what took place. You have to maintain a high level of trust, despite a significant degree of often unrecognized memory impairment. Sometimes that means walking with them through a degree of unreality. It’s hard to temper one’s own expectations when this happens. It’s also very hard for anyone to go through these dynamics with a parent.
One thing I have observed in many care situations is that grandchildren often have an easier time than children in processing the dynamics. Because they don’t feel the weight of losing a parent, a grandchild feels less emotionally burdened. After all; their grandparent has always seemed older and closer to death. Impairment or disability feels like a more normal state to a grandchild, where a child still remembers when they depended on the parent for everything. It feels more world-shattering to lose a parent. In some ways, giving medical POA to a grandchild (or to the spouse of a child) can relieve some of the stress off one’s own children.
This is really insightful. Have you written on this, here on Substack or elsewhere? If so I’d love to read it.
My husband and I do have advanced directives. We have discussed them with our young adult children. I had not thought about a conflict between our preferences and their own internal feelings. I appreciate having that brought to my awareness.
My parents also have advanced directives. My sister is their proxy, as she is local to them and I am not. I am so grateful, though, that they have made their wishes very clear to us. It helps that we mostly share values. It also helps that they are both 80ish, and so I think it would be easier to, say, decline a ventilator now than it would have been 20 years ago.
Neat to see you in the Pillar. I used to read the Pillar but unsubscribed a few years ago because one of the editors (you may know which one) was pretty...militantly pro-life, in a bitter way. I have empathy for him as he was formerly infertile. As someone who has an endocrine syndrome that can compromise my fertility, I understand the envy, although unlike him, I have never tried to conceive. But that doesn't mean I don't wonder what might happen if I *did* try. But I'm glad to see it seems he and his co-editor may have shifted their perspective enough to publish something about Prams and potentially fatal pregnancies...and from someone who publishes their own column with the word "feminisms" in it. Nice job. Maybe one day I'll resubscribe to Pillar if they continue publishing you.