We’re all going to die someday.
Let’s talk about how you as an individual want to die. Some people won’t make the choice. They will be slicing onions in the kitchen and suffer a massive cerebral hemorrhage that will effectively kill them before they are on the ground. Most of us will have time to face death and decide how we meet our deaths though.
The Conversation Project has a good set of resources for people who want to start these discussions. What type of care under what types of conditions, prognoses and hopes do you want? Who do you want to make decisions when you can’t decide or communicate?
Medicare (and most private insurers) will pay doctors to have advanced care planning discussions with patients and their families. These discussions usually will come at either a well visit if they are generalized planning or at a sentinel sick visit for specific, prescriptive planning. The conversation can range from a desire to have everything done including super-heroic, low probability of success measures to aggressive curative attempts to enrollment in trials to curative care with a transition towards palliative or hospice care. Those are all choices that people can, will, and do make.
And these choices can and will change over time. That is okay. Communicate these new choices with the people you care about.
A few weeks ago I was back in Boston with my parents. My mom is retiring. Mom and Dad needed me to talk through all of their health insurance and Medicare options. They had done most of their homework over time so we came up with a plan that I think will work pretty well for their needs. And then we talked about how my mom, a former oncology and medical/surgical nurse was doing her advanced care planning. She knows what she wants. She likes the idea of primarily curative care to age 75 and then a comfort and functionality care focus after age 75. She does not want to be an ICU. She does not want to be bedridden. My older sister (as it traditionally is the case) is the healthcare proxy in case my dad is unable to assist and I’m the back-up to the back-up.
My dad is still trying to figure out how to have this conversation and what he wants. I’ll ask again at the end of the year or the next time they are on the East Coast grandkid visiting tour.
I need to figure out what I want and have that conversation with my wife.
So have that conversation. Have that conversation if you are young and healthy. Have that conversation if you are old and planning a six month hike along the Appalachian Trail. Have that conversation if you are seeing a doc a week. Have that conversation and then ask your loved ones to have their conversation about what they wish with you.
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Thank you David.
Have those conversations and then document them! My mother and I had those conversations, and we taped her DNR on the fridge door. My dad was very private, and didn’t want those discussions. Now he is in his nineties with dementia. I knew what he wanted when he was in his fifties and his parents were declining. I have no idea if he changed his mind later, and he has no idea what he wants now. But In my state the right-to-lifers have overtaken the legislature, and extreme curative care is now the legal requirement unless we can prove otherwise, and with his dementia for us it is too late. I am afraid he will spend his last weeks or months being tortured in an ICU.
Smiling this article on this topic…needs to happen more often across the USA…Well done Dave!
Link to NYTIMES Article
ETA to try to fix the linky. Newbies. Sigh. Sorry, guys, I’ll figure it out.
Timely article on the topic, sent my way last night by my mom who will be wrapping up her life over the next few months. In our state, physician assistance on the way out is not on the menu, and that feels to her like a denial of dignity and fundamental respect for her agency. Whether or not she would ever use this isn’t the point, so much as why it’s not a legal option at all.
@Sab Sorry to hear about your dad’s situation, and yours by extension. That is frustrating and difficult, having those decisions removed by other people’s ideology.
And please folks, make sure there is nothing your relatives can find that will change their opinion of you. If you wouldn’t want your grandmother or your daughter to find your stash, please get rid of it.
The first line of this thread reminds of this WKRP in Cincinnati classic: https://youtu.be/BXRxYLfq78g
I know what I want and my wife doesn’t want to hear it.
Atul Gawande has a really good book, “On Mortality”, discussing end of life issues and his own experience with his physician father.
@OzarkHillbilly: I hear you. Fortunately my step kids hear me, and agree with me, not their dad.
@ Argiope: Apparently I need coffee and a tutorial. Not necessarily in that order.
@Gindy51: I’m an asshole. Nothing people might find would ever change that fact.
@Argiope: Your link worked for me. Thanks for the article.
Jake the antisoshul soshulist
I have a medical directive. And I’ve told my family to hold a pillow over my face if they have to.
@Jake the antisoshul soshulist: Great idea. I’ll mention that to my steps.
Suggestion for Google: Create an app, a site, for this sort of thing. It would be easily accessible by anyone, very inexpensive to host. People can put their docs, the pics, the plans where they could be easily accessed by next of kin.
Thank you David/Richard for this thread. Also FU Sarah Palin.
@Sab: I think it has to do with the ways our parents died. Both her parents died quite suddenly without warning. My mother had to endure long and painful months in and out of ICU and was fortunately capable at the end to say “Enough.” My father suffered with Alzheimer’s for years. Under such circumstances life is not a gift, it’s a burden.
That parallels my family experience.
Reminds me of one of my favorite jokes: I want to die peacefully in my sleep, like my grandfather, not screaming in terror, like his passengers.
It’s in my health care directive and there’s even a clause to say that if assisted suicide becomes an option and I’m not able to decide, my family should look into it. My family knows and so do other people. I was fortunate to have had the conversation with my dad so when he had dementia and developed aspiration pneumonia, we knew what he would want. I see so many taking care of parents who don’t even know who their children are, and I wonder if exhausting their children like that is really what they would choose.
@Argiope: I fixed the link and the article made me tear up over my coffee.
Having the conversation is good and important, but make sure you do what is necessary to cover situations where the proxy person isn’t available. E.g. What happens if your oldster is out in public in another state and has an accident, an ambulance gets called, and they get taken to the ER? Those people are trained to try to save lives, (usually) no matter what it takes.
Will a card in their purse or wallet saying “DNR” be good enough? Do you need to notify all of their personal physicians? Hospitals? Ambulance services? Are there state laws covering these things?
When we had to call an ambulance for J’s father, even if we had a DNR or other healthcare directed posted on the refrigerator, it probably wouldn’t have been noticed because we were thinking about the immediate situation and frazzled, and the paramedics were trying to get him into the ambulance as quickly and carefully as possible.
I’m not sure the answers to these questions. It probably varies by localities, and maybe some of the links above address these issues. But it’s something to think about…
Dr. Ronnie James, D.O.
@CarolDuhart2: State of NJ has a standardized form (POLST) that you have to fill out and either file with your lawyer or send to the state. Other states may as well, I just know NJ. But it’s a great idea to have a centralized registry that docs can look up.
Sister Rail Gun of Warm Humanitarianism
Yes yes yes. My parents went to the trouble of having living wills drawn up back in the 1980s when they were still a new idea. When Dad was moved from the hospital to a nursing home after his stroke, I had to show up at the nursing home with the living will and an attitude.
Have that conversation. It will help your designated decision-maker stand up against considerable pressure. One of the reasons I eventually prevailed was that almost everything I said included the phrase “When he was deciding on the provisions of his living will, he told me….”
The conversations are important even if your relatives fill out advance medical directives and other paperwork. (As an aside, be sure to include something on financial stuff – it’s important to make sure there’s someone who can pay the bills.) My dad very carefully filled out the paperwork and I went through it with him. But when he had the stroke that killed him, there was a point when we needed to decide whether to take affirmative measures to keep him breathing until the time he could be declared dead to preserve the ability to donate his organs, and that was something the directive didn’t cover. We decided to do that because we knew he wasn’t feeling any pain – he really wasn’t there at that point – and the donation would do good. I’m pretty sure it’s what he would have wanted, but it was still a guess because we hadn’t talked about how important organ donation was to him. (The coda to the story is that at least one of his kidneys was used, even though he was a 70+ year old smoker – we know because we got a thank you note from the recipient.)
Then there is the terror of your siblings, who have been AWOL for the last decade, dropping in at the last minute and second guessing your decisions because they want Mom to live forever although they can’t be bothered to visit her even once a year.
One other thing – it’s important for the entire family to be on the same page if the person doesn’t want heroic measures. Doctors sometimes will ignore even written instructions from the patient not to take those measures if they think a family member objects. I understand that impulse, honestly, even if I don’t entirely like it.
@randy khan: That is so good to know. Thanks.
More than a few doctors have “No Code” tattooed on their chests for this exact reason.
Dr. Ronnie James, D.O.
Echoing what some folks have already mentioned above, my wife is an ER doc who unfortunately has to have these conversations pretty much every shift, and usually in the span of about 90 seconds. Some of her insights:
* learn about what is really involved in CPR, intubation, feeding tubes, etc., as well as the typical prognosis: CPR usually fails, 90 year olds never get off ventilators, and so on. Typically people are quite shocked at how brutal they are (CPR usually breaks your ribs/ sternum, and leaves your chest looking like a smoking crater, especially in a code), and when they’re fully informed, they almost always choose dnr/dni/dnf.
* communicate with your relatives, as many as you can. Docs typically will defer to the closest relative in the room, and often your SO/ brother/ etc is unreachable and so Cousin Dale ends up having to decide.
* in addition to your various DNR/ living will forms, etc., be sure to designate a health care proxy, because invariably your care may involve a big decision that you and your lawyer/ family didn’t anticipate, and you want a loved one making that decision.
* have your information on your person if you can. It’s better than having the ED intubate etc while they wait for your forms to be retrieved, then having to extubate you.
* If you can’t/ don’t formalize or communicate your wishes, the relatives who have the least contact with you will be the most vehement about “try everything” and vice versa.
* BIGGEST POINT: blood relatives will most likely be too distraught to make these decisions in the moment. It almost invariably ends up that a patient’s son or daughter in law (should they have one) is the only one with a clear enough head to do it. My wife says this is the biggest surprise she’s learned in providing end-of-life care, and it’s almost an ironclad rule at this point. So make nice with them, if you haven’t already (duh). And if you are someone’s SIL/ DIL, prepare yourself.
The dead don’t sue, the living do.
@Argiope: I read that one last night…that’s the way to go. I have no doubt that, provided something sudden doesn’t happen in the next several decades, that if I get a terminal diagnosis, I’ll be relocating to wherever physician assisted suicide is legal.
Write it down and appoint a medical PoA who will follow your wishes. There is no requirement for a spouse to be the PoA. Your wishes take precidence over hers
I was going to say that your wishes trump hers, but in the current political climate….
I know. I told her it’s my life, it’s my decision. Thus ended the discussion. She is just not comfortable with that aspect of reality.
The Moar You Know
Did this as part of the living trust my wife and I did a few years back. The lawyer was a hardcore conservative Christian Republican, who had lost his wife to bone cancer a few years back. He came up with the following:
“I authorize and specifically request any and all pain management to be used at maximum dosage so that pain is effectively relieved, even if said dosage is not conducive to my survival.”
Did NOT expect that from one of the Jesus crew. But, y’know, he’d been there. And he wasn’t going to let any of his religious baggage allow anyone to suffer. I always respect a guy who can do that. Most can’t.
He gave us a good crash course in how to deal with doctors or nurses who might fight us on this, and although it’s pretty unlikely that he’ll be around when that time comes (he was quite a bit older than us) he gave us his standing offer – if a doc gets in the way, call him and he’ll have a court order in under a day.
So yeah, all things considered I’d prefer to go out with a nice hot shot of opiates, but if not, at least quickly. And thankfully, for now we in CA have the assisted suicide option.
My main goal is simply to outlive my dog (very likely). I’d prefer to outlive my wife, as would she. No one else is allowed to make decision calls for us save each other. We have no kids and neither one of us trusts our relatives to do anything remotely like the right thing.
The Moar You Know
@OzarkHillbilly: I’ve asked several medical people about this. It will be disregarded. They need a legit, on paper, directive.
@Wag: Important that you appoint a competent POA and have clear directives. My mother trusted her physician husband. But then he got dementia and would have done anything to keep alive the love of his life.
Full Metal Wingnut
@Dr. Ronnie James, D.O.: I’d really rather not make that decision for my mother or father in law. For one thing, I’m actually close to them even though they didn’t raise me. And second, I also couldn’t be objective because I’d worry too much about my sister in law and other parent in law and especially wife’s reaction if I decided to pull the plug. No way.
And no way my wife gets that power over my parents. I can’t blame her though based on how they’ve treated her.