the most important and costly conversation America is not having

April 19, 2016 11:12 AM

"In celebration of National Health Care Decisions Day, Death Over Dinner and The Conversation Project are teaming up once again to challenge Americans to fill their table with comfort food, family, and friends — to break bread and taboos by taking part in a nationwide dinner party... Send an invite to loved ones, and then set the table to start talking about end-of-life care and how we want to live the final days of our lives."

Previously: She might've called it Getyouracttogether.org, but she changed one word.

posted by amnesia and magnets (24 comments total)

I wish more people would think about end of life issues. My boss has had several pretty serious health scares in the last few years, and he is adamant about his wishes (DNR, no extreme measures, etc), and yet he obstinately refuses to consider executing an advance directive, despite my having printed one out for him on at least 3 occasions and despite his healthcare provider requesting one from him at the time of a hospitalization (on an emergency basis) a few years ago. I have no understanding whatsoever of what drives this attitude.
posted by janey47 at 11:59 AM on April 19, 2016 [2 favorites]

I think that this is related so I'm dropping it in.

Planet Money on NPR did a podcast about how the town of La Cross, Wisconsin has been able to have ~96% of the pple who die in that town with directions for end-of-life (vs. ~50% of the rest of the United States). They interviewed some people who suggested that within the town, people apply peer pressure to get even health people to make these decisions and fill out the paperwork.

Another interesting aspect of this is that research has suggested that doctors predominantly chose do-not-resuscitate status for themselves (~88%).
posted by Wolfster at 12:10 PM on April 19, 2016 [4 favorites]

This reminds me of a question I've got: I have the health directive forms for my dad, signed by him and me and my brother, but he lives in a different state. Do I have to make sure I pack 'em up somewhere if he gets sick again? I should probably send copies to him and my brother? Even when I know we've got the paperwork done right, I don't know what I'm supposed to do with it.
posted by lauranesson at 12:15 PM on April 19, 2016

lauranesson, your dad, his doctor, his lawyer (if applicable), and anyone named in the advance directive as someone authorized to make decisions for him when he can't should all have copies. You just want to be sure that, when needed, the paperwork can be produced quickly in order to satisfy the ethical standards of the healthcare provider at the time.
posted by janey47 at 12:20 PM on April 19, 2016 [2 favorites]

If I got the phrase "DO NOT RESUSCITATE" tattooed across my breastbone, would it be legally binding?
posted by Faint of Butt at 12:28 PM on April 19, 2016 [1 favorite]

Again, I would like to say that the one of the most positives thing about my father passing this January was that he had always been so very up front about how he wanted to die.

My mother and I could just process our thoughts and do the things on the list that he wanted. When anybody made face or challenged the no funeral, we could just say "Sam didn't want that." And because my father was who he was, everyone immediately knew that was the truth.

And because sometimes what he wanted was just too hard, we decided that we were going to ignore it, because he was gone and he couldn't make that disappointed face at us. But we did it knowing we were picking something that WE thought was important and that really, he'd understand.

Seriously people, it's deeply important to have these conversations with your family. It'll make life and death so very much more tolerable.
posted by teleri025 at 12:31 PM on April 19, 2016 [7 favorites]

Faint of Butt - Maybe not; I can imagine someone doing this as a joke, or, more likely, changing their mind years after getting the tattoo...

I have thought about tattooing my allergy info on, but I'm not sure that would work, either.
posted by amtho at 12:31 PM on April 19, 2016

Faint of Butt -- DNR is only one part of end of life planning. What if you aren't in immediate danger of death but you aren't able to state your wishes? What if it's dementia? Then you need to have someone appointed to be the one who speaks for you. And the more detail you go into in your advance directive, the better for all concerned.
posted by janey47 at 1:01 PM on April 19, 2016 [1 favorite]

Thank you, janey47. That helped a lot.
posted by lauranesson at 1:08 PM on April 19, 2016 [1 favorite]

Note that The Conversation Project's founding funder is Cambia Health Foundation, the corporate foundation of insurance company Cambia Health Solutions. If I were a car insurance company, I would want people to have conversations about how they don't want their car replaced if it's ever totaled because walking is really so much better for you and for the environment.

Okay, that was somewhat flip. But it's not at all clear to me that conversations among young[ish], healthy, vigorous people about what they would want to do in a situation where they are suddenly very sick or have a disability have as much value as these movements want us to think. And I can't really do better than mumimor's poignant and impassioned comment here (which does advocate strongly for end-of-life conversations with patients, but not healthy people) so I'll just leave that there.
posted by Ralston McTodd at 1:43 PM on April 19, 2016 [1 favorite]

I am watching in horror as a FB friend expresses shock over his elderly, very sick wife requesting a DNR bracelet. No health care proxy there, I'd expect.

Thank God my mom and I had detailed conversations about this while she was still lucid.
posted by Sheydem-tants at 1:49 PM on April 19, 2016 [1 favorite]

There was an elderly cardiology patient with a DNAR tattoo in my hospital when I was very junior. Then he remarried, and the next time we saw him he'd had the "not" blacked out.

There was also the chap with "DNAR" and "blood group A positive" tattooed over his chest. He was not blood group A positive either.

So yeah, I would just talk to your next of kin if I were you.
posted by tinkletown at 1:49 PM on April 19, 2016

If I got the phrase "DO NOT RESUSCITATE" tattooed across my breastbone, would it be legally binding?

Only if properly drafted and witnesses tattoo their signatures on you, and those signatures are notarized.

So it would probably have to cover your entire torso to get the necessary language, signatures, and notary tattoos.
posted by jpe at 2:34 PM on April 19, 2016 [2 favorites]

Okay, that was somewhat flip. But it's not at all clear to me that conversations among young[ish], healthy, vigorous people about what they would want to do in a situation where they are suddenly very sick or have a disability have as much value as these movements want us to think. And I can't really do better than mumimor's poignant and impassioned comment here (which does advocate strongly for end-of-life conversations with patients, but not healthy people) so I'll just leave that there.

Much as we are loathe to admit it, everyone runs a risk of dying or being severely injured pretty much at all times. In my research I work with the families of trauma patients and the surgeons who care for them. There are many horrible aspects of having a loved one experience a traumatic injury and end up in the intensive care unit, but a significant one unique to this population is that the family usually has absolutely no idea what the patient would have wanted in terms of life sustaining care.

In the medical ICU or for patients who are at the end of a long illness, it is more frequently a conversation that has already taken place and families take solace in knowing that they are caring for their loved one by making sure their wishes are known. Conversely, trauma patients' families become trapped in a really soul crushing catch-22 where they feel that they must pursue aggressive care (because they don't know that their loved one didn't want it) all while seeing the effects of that care, which are often quite violent and potentially painful (obviously as much as is possible is done for the comfort of the patient, but invasive interventions are painful).

mumimor's comment is well taken and I absolutely think we need to be doing more to make sure that everyone who needs care feels empowered to receive it. However, talking about patients who don't receive care because of stigma or structural barriers is not what we are talking about when talk about goals of care in end-of-life. They wrote, "People in hospitals want to get out of hospitals. People who need care want care." The patients whose families I work with will never get out of the hospital in a meaningful way. They have severe brain injuries, they are unable to breathe on their own or communicate, they cannot eat or drink, and they cannot regulate their own organ systems. These people may "need care" so that their heart will continue to beat, but as Wolfster noted above, the vast majority of people who know the details of what that care would entail do not wish to receive it themselves. (And this is really not germane to this FPP, but data from Oregon and Washington state uniformly show that vulnerable populations choose physician-assisted suicide far less than other groups, not more. If anything we are failing these patients by providing too little access to such services, and certainly not by marginalizing them into choosing death!)

As they say, you can't get what you want if you don't ask for it. Most people believe their spouse or loved one "just knows" what they want, but studies have repeatedly shown that spouses hold incorrect beliefs about their partners' desires for end of life care. Thinking about death is very hard for most people, and I think it's even harder to predict what kind of care you will want, but I believe most people should make an honest effort to do so and talk with their loved ones about it.
posted by telegraph at 3:19 PM on April 19, 2016 [9 favorites]

Just to be clear, I think that these conversations can have value. But in the current climate, when organized movements get involved, I believe that there is also a potential downside beyond "I don't want to talk about icky things like death." The language behind these movements is very calming, it's all about conversations and choices, but the intent is clearly to cause more people to decide in advance that they don't want expensive treatments. They might not have wanted the expensive treatments anyway and would have been forced into having them -- that's the upside of these discussions -- but imagine you're sitting around a table of people very thoughtfully discussing end-of-life issues, using materials helpfully provided by one of these foundations. Are you going to be the one who says that maybe you'd want everything done? Look around the table at all the caregivers and taxpayers that you're going to be burdening. Do you not read The New York Times on the subject of how Europeans die so much better?
posted by Ralston McTodd at 3:33 PM on April 19, 2016

the intent is clearly to cause more people to decide in advance that they don't want expensive treatments

I haven't yet formalized my wishes on paper, but wow, that's a really uncharitable motive to ascribe to most of the people involved in end of life care.
posted by feckless fecal fear mongering at 3:43 PM on April 19, 2016 [5 favorites]

As the son of a 91-year-old mother with senile dementia, I urge everyone reading this to buy quality long-term-care insurance. That my parents did this in their fifties has literally kept me from bankruptcy and allowed my mother to have a standard of full-time care that she would not have been able to afford otherwise.

Long-term-care insurance. Get you some. For real real.
posted by BitterOldPunk at 3:44 PM on April 19, 2016 [4 favorites]

that's a really uncharitable motive to ascribe to most of the people involved in end of life care.

I am not talking about everyone involved in end-of-life care, just the groups advocating that we need to have these discussions in an organized way. Look at their websites -- they're full of approving stories about the 90-year-old who turned down cancer treatment in favor of a road trip and the like. And I don't even think it's necessarily an ulterior motive (among non-insurance-company activists). Many people are convinced that we would be a happier, better society if we changed "the American way of death" and don't see any potential unintended consequences.
posted by Ralston McTodd at 3:49 PM on April 19, 2016

Disclaimer: I work for the UK equivalent of these organisations though without the health insurance bias as that's not really a thing here - we're a charity. I do see the concern around the possibility of persuading people to opt out of treatment and I'm not qualified to comment on that from a US perspective as the stuff there around people agreeing to no more life-prolonging treatment in order to access hospice are very different from how it works here.

What I can say is part of what my organisation does more generally is around encouraging everyone to talk about death, dying and bereavement, with an idea that destigmatising those discussions can make other discussions about specific end of life care planning easier, because death is less of a taboo (as well as the general help in processing grief if it becomes a thing people feel more able to talk about). The tools we provide for people to use for advance care planning, funeral planning, etc. are there for when it's appropriate, which might not be until a person receives a diagnosis of some kind, or it might just be when it's on their mind generally, or when someone else they know dies and it catalyses them into planning.

My personal experience with this stuff is twofold: my mum had a terminal diagnosis when I was a child and was very clear about what she wanted. I literally have a video of her from 25 years ago, saying she wanted to die with her friends around her and flowers everywhere and she wanted to be at home. She and my dad sorted out their finances and insurance and she talked to her care team, and she had the death she wanted. Then a month ago, my brother - the same age as she was when she died, 32 - got rushed into intensive care out of nowhere and nearly died. His wife had no clue what care he'd want. They've never discussed it. She didn't know how to make their credit card payments, tell the doctors whether he'd want to participate in a research project related to his diagnosis if he was awake, what she'd do if he didn't get better, what she'd do if he woke up but was disabled in some way, nothing. It is scary to think that that could happen to someone, I get it. But it's really really scary if it does happen and you're completely adrift.

More broadly, I was just involved in a national audit of people dying in hospital and one of the findings that really struck me was that of the sample of people going into hospital to die*, if they had a care plan and written-down wishes - not just DNR but things like who could advocate for them, 91% of the time those plans were taken into account when the medical team were planning and delivering care. But only 4% of people came into hospital with one of those plans in the first place.

*for reference in total that's about 49% of the people who die each year in England and Wales, approximately a quarter of a million people - the audit covered one month of deaths.
posted by theseldomseenkid at 3:49 PM on April 19, 2016 [5 favorites]

When I was taking my first bioethics course, lo these decades past, I wrote a dnr if I met the Harvard criteria of brain death, I have subsequently enlarged the scope a bit, primarily in reaction to Texas law that forces post mortem prenatal ventilation, which is to say that if you are pregnant in Texas, and you have something happen which causes brain death, they can keep your corpse ventilated for months. There has never been a successful birth after long term ventilation, but men are sure they know how uteri work, so my end had to include "even if I'm pregnant, if the baby cannot be delivered immediately", which itself took some deep thought, because well, ethics.

Point being, I feel that I might have the mental strength to overcome physical incapacitation, but if my brain is gone, then so am I, just let the shell go. But everyone has to have that conversation with that dark spot on the horizon, and make their own peace with the thought of mortality. I'm not sure that's a thing that can happen over crab puffs at a casual party.
posted by SecretAgentSockpuppet at 3:50 PM on April 19, 2016 [3 favorites]

My parents refuse to discuss their end of life wishes with anyone and I find out months after the fact about major surgeries and health scares that are just brought up randomly in conversation or emails.

It's awful - I have no idea what they want and they are in complete denial about it even though both of them have had specific issues come up in the past year that shoud be incredible motivation to at least make verbal requests about how they want to be cared for.

I finally told them I'm not a mind reader and if grown adults can't or won't write down what their wishes and instructions are I can't force them. I've washed my hands of it, and living 3000 miles away means I probably won't be there in time to have any kind of say in anything. If I even find out in time to do anything.

This thread is a great motivator for me - I'm going to finish my paperwork that's been languishing and get it properly vetted.
posted by lootie777 at 4:11 PM on April 19, 2016

Let me chime in with another " it's never too soon to have these conversations." My sister in law had an intercerebral hemorrhage at the ripe old age of 37, and it was a cold comfort for her parents and her husband to be able to say," no, we've discussed this and she always said she did not want to be kept alive in these circumstances".

Which brings me to, even when you've made your decisions with all the corresponding paperwork, please make sure your proxy is on the same page as you. More than once, I'd seen patients who were no longer desiscional have their wishes superseded by their POA. if your spouse or closest relative has explicitly told you that they're not comfortable with your wishes, you can assign healthcare power of attorney to a friend who is.
posted by jacy at 4:38 PM on April 19, 2016 [1 favorite]

I do think that there's a huge bias towards forgoing care and accepting the inevitability of death, and there are very good reasons for that (including that death is, in fact, inevitable), but I wonder what it means for people whose wishes are to be kept alive for as long as possible, no matter what. I think that the way that the conversation is supposed to go is that you're supposed to say that you don't want this or that heroic treatment, and I don't know that I do think that people are always going to feel comfortable saying that they want the things that you're not supposed to want because you're supposed to be a spiritually mature person who accepts the inevitability of death. I also think that it's impossible to know in advance what you would want in the moment. I think right now that I would not want a feeding tube and I would not want a ventilator and I would not want all sorts of things, but I have seen people fight to stay alive in circumstances where I would think that death would be better, and I don't know if I will be that person when this stops being hypothetical and I am actually facing the end of my life.

I don't know. My grandmother is fading fast, and I've spent all day waiting for a call to tell me to book a flight for a funeral, and this probably isn't the right day for me to be thinking or posting about this. I am very, very glad that my grandmother has an advanced directive, because this is hard enough on the people who love her without them having to guess about her wishes. So maybe you do it to relieve the burden on your survivors, even if you may end up making a decision that you'll regret when the time comes.
posted by ArbitraryAndCapricious at 5:24 PM on April 19, 2016 [3 favorites]

Which brings me to, even when you've made your decisions with all the corresponding paperwork, please make sure your proxy is on the same page as you. More than once, I'd seen patients who were no longer desiscional have their wishes superseded by their POA. if your spouse or closest relative has explicitly told you that they're not comfortable with your wishes, you can assign healthcare power of attorney to a friend who is.

This is where I have a problem: this came up with my father--he had a DNR and well, wasn't allowed to die for over a year and a half because Mom had hope. I fear if we discussed this, she'd say "Keep me alive no matter what, if there's life, there's hope" (except I wouldn't want to because I don't want to go through this again) and I'd be all "kill me now" and she wouldn't because she can't let me go. And we really don't have any other trustworthy relatives to give power of attorney to, and my friends keep doing shit like moving out of the town/state/country so I don't think I can give it to any of them reliably. Your PoA needs to be someone who's on the spot ASAP. So....I'm fucked.

Also, what do you do if you fundamentally disagree with someone hanging on no matter what, but they WANT to hang on no matter what? Long past the ability to say yes or no about it?
posted by jenfullmoon at 7:35 PM on April 19, 2016 [1 favorite]