March 23, 2020

"As an ER doctor, I am already faced with patients who arrive too sick to tell me their wishes, with no documentation of what those were when they were well enough to articulate them..."

"... and with family members who never asked and, as a result, just don’t know. It is in these situations, as I place tubes and lines in this failing body, that I worry we are not providing care that is concordant with their goals. If I had known that the 68-year-old with recently diagnosed metastatic breast cancer is more worried about being uncomfortable at the end of her life, rather than prolonging it, we wouldn’t have placed that breathing tube and would instead have focused our intensive efforts on making her comfortable. If I had known that the 81-year-old had always hoped to die at home, I would have spent more time trying to mobilize our home hospice team rather than defaulting to a hospital admission.... I recently had this conversation with my own father and found out that he worried more about getting overly aggressive care than he did about not getting enough.... I wish we didn’t have to make and share these difficult decisions, but I worry that we are in a situation that necessitates it even more than usual."

From "Do your loved ones a favor. Find out now how they want to die. I’m an ER doctor, and we need to know what matters most to your family member" by Emily Aaronson (in WaPo).

One thing that Aaronson doesn't talk about is how bad it is in a time of shortage to use hospital equipment and services on people who would prefer to be left at home and to struggle to breathe or die without the invasion of ventilator tubes.

Perhaps the inference is so obvious it's just brutal to specify it. That's a little ironic in an article about the problem of failing to "articulate" things. But I can see why Dr. Aaronson keeps quiet about anything that feels like utilitarianism.

63 comments:

Dave Begley said...

Health Care Power of Attorney documents are part of what I do.

Essential.

Oso Negro said...

I would prefer to die with a pile of my enemies dead around me. Or better still in a whorehouse in Rayong at the age of 101 under the care of a pair of Thai girls. But if it's gonna be the Red Chinese Flu, at home would be better.

mccullough said...

People who go to the ER tend not to have their Health Care Power of Attorney Paperwork with them.

mccullough said...

People change their minds all the time.

Lucid-Ideas said...

Also make a video on your phone and send it to them, either designating power of attorney or providing your wishes.

I'm young-ish but I have already done this, and many of my family have done the same and sent to me.

I also helps if you put a not on the back of your license, at least with who to call should end-of-life be near or you're incapacitated.

Left Bank of the Charles said...

The unsaid thing is that he is asking for volunteers.

Carol said...

Well, my wishes were filed with the state registry. Will the hospitals even look at that thing?

pacwest said...
This comment has been removed by the author.
Michael K said...

It has been known for a long time that health care utilization peaks at age 70 and declines thereafter. Some of this data may have changed a bit with better life expectancy since I did this work but, I suspect, not much.

chickelit said...

Last summer my elderly mother fell unconscious after a brain hemmorage. She was kept alive long enough for us to gather and decide what to do. She was intubated and never regained consciousness. Fortunately for us, she had made the decision not to live under such conditions.

pacwest said...

Well, my wishes were filed with the state registry. Will the hospitals even look at that thing?

File it with your local hospital and personal doctor.

JAORE said...

We have durable powers of attorney, medical directives and living wills. Make sure your loved ones know what they say and where they are located.

Sebastian said...

"If I had known that the 68-year-old with recently diagnosed metastatic breast cancer is more worried about being uncomfortable at the end of her life, rather than prolonging it, we wouldn’t have placed that breathing tube and would instead have focused our intensive efforts on making her comfortable."

Why is heroic care for sick old people the default? As in organ donation, the assumption should be comfort first unless instructed otherwise.

"If I had known that the 81-year-old had always hoped to die at home, I would have spent more time trying to mobilize our home hospice team rather than defaulting to a hospital admission"

Why is that not the default? Let families argue for intrusive care if they wish. But if crisis looms, triage must take over.

"I recently had this conversation with my own father and found out that he worried more about getting overly aggressive care than he did about not getting enough"

Of course. I have yet to meet one old or near-old person who thinks otherwise. One exception: a friend suffering from a very serious, fatal disease in middle age made it very clear he wanted everything possible done.

"One thing that Aaronson doesn't talk about is how bad it is in a time of shortage to use hospital equipment and services on people who would prefer to be left at home and to struggle to breathe or die without the invasion of ventilator tubes."

Exactly. It is very bad. Exacerbates badness.

"Perhaps the inference is so obvious it's just brutal to specify it. That's a little ironic in an article about the problem of failing to "articulate" things. But I can see why Dr. Aaronson keeps quiet about anything that feels like utilitarianism."

You can see why . . . So, why? Might he be keeping quiet about that because some people resist a rational approach? And might such resistance be conveyed by calling an obvious inference "just brutal"?

Not trying to give Althouse a hard time. I am hopeful that she will come around to the pro-rationality side. This post is a good sign.

bagoh20 said...

Good news: Yesterday, Washington state, a hotspot in nation, had only 1 new death.

bagoh20 said...

My directive only says: "Save my ass, or I'll have yours in the afterlife."

daskol said...

Sebastian, the reason to avoid explicitly utilitarian analysis is because done without nuance, it appears utterly beastly.

daskol said...

Of course doctors have always had to make life and death and other treatment decisions and they certainly consider utilitarian factors, and discuss this candidly with one another. But outside the profession, they are careful about how they speak about the day to day life and death and treatment decisions that are routinely taken in hospitals, by individual doctors and often without the ethics board reviewing them.

Sebastian said...

daskol: Any "utilitarian" analysis can be made to "appear utterly beastly," and there are always "nuances" that somebody will require.

Of course, avoiding "explicitly utilitarian analysis" just means that decision makers will engage in implicitly utilitarian analysis. And we will all feel much better, won't we, because they will do it in a much more nuanced, much less beastly way, sparing our feelings by doing it right.

bagoh20 said...

Last year we let our Mom die at her home - cancer. She was surrounded by loved ones who could stay with her 24/7. That was the best way it could go down. It was gentle and loving, and really brought the family together. It was exactly what she would have wanted. Personally, I'd rather die alone, maybe on a mountaintop somewhere, or in an active volcano.

Sebastian said...

"Yesterday, Washington state, a hotspot in nation, had only 1 new death."

You say that as if it is a good thing.

At that rate, taking other states into account, we will be up to 11 million deaths in another 10 million days or so.

daskol said...

In a hospital with relatively fixed resources for treatment, triage decisions must be taken with the information and resources at hand: that's not beastly. In a society in which pandemic control measures are being considered, where information is not at hand and resources are not as known or fixed, calculating QALYs saved and delivering conclusions that involve letting lots of older people die both appears, and I think is, beastly. It's an aspect of the analysis, but it's not rational to make it THE analysis.

daskol said...

There's grim arithmetic, and then there's QALYs lost or saved.

Rabel said...

I don't know if any of you have had a "struggle to breath" lately, but if you do in the future you may find that your preconceptions about hospitalization and life-extending medical care fall by the wayside rather quickly.

Marc said...

Of course, avoiding "explicitly utilitarian analysis" just means that decision makers will engage in implicitly utilitarian analysis.

I don't understand this.

Am not much interested in the opinions of people who claim to own the one 'rational approach' but am willing to continue reading here. The realization that I have days free of work etc etc is only beginning to sink in.

Bay Area Guy said...

@Sebastian,

"Yesterday, Washington state, a hotspot in nation, had only 1 new death."

You say that as if it is a good thing.

At that rate, taking other states into account, we will be up to 11 million deaths in another 10 million days or so.

__________________________________________________

Now, that was clever and funny -- well played, well needed.

The Minnow Wrangler said...

This is so true. I have a health care power of attorney in my "death" folder in my file cabinet. No ventilation or artificial life support.

My mother died of cancer in 2017, they offered her surgery, radiation, chemo, and she didn't want any of that, which would have only extended her life by a few months at best and would have made her sick and miserable the whole time. Instead she got home hospice services and died at home, at the time of her own choosing (I'll never know for sure, but I think she intentionally took an overdose of morphine). She was ready to go and spent the last few days with all of our family together. It was a beautiful thing to spend those days with her and have an extended goodbye.

My mom was really something, she was emailing and writing letters and making phone calls for her last few days, to make sure all of her earthly business was taken care of. We even had a notary come to her house so she could sign over her car to me.

Lurker21 said...

People who don't want to be resuscitated if they have a terminal illness may want to be ventilated if they get the flu. Most people who have families and expect a few more years of life probably wouldn't want to lose their life over coronavirus. I hope the documents make such distinction and that relatives, doctors, hospitals actually read them.

Josephbleau said...

I won’t go gentle, and I won’t go cheap, I want it all until the clock stops.

Lloyd W. Robertson said...

I still don't really get why this is such a catastrophe for hospitals compared to the usual season flu. Is it just a number of people--even a relatively small number--all showing up at the same time, whereas a bigger number would be more spread out over flu season? Or are there reasons why flu patients don't get on respirators, or don't even go to ICU?

1. They have had time (the disease developing more slowly) to make their wishes clear, and extensive intervention is withheld?
2. If they've been living in a seniors home or nursing home, there is a standing DNR or do not resuscitate order? But wouldn't that be just as much the case now?
3. There is a specific type of sickness in the lungs that Covid patients get but ordinary flu patients might not--even if they're dying?
4. There are vaccines and other medicines that actually work on flu, and can be applied at home; so flu patients are more likely to die at home?

JES said...

My mother, who was in and out of nursing homes and hospitals for years, had a directive on file and, as a family, we were comforted knowing she had made decisions about her care. But, when hospitalized once and still lucid, they asked her if these were her instructions and, when faced with the thought that this could be her last day, she changed her mind. Do whatever is possible, she said. It is easy to check the boxes when somewhat healthy. Facing death in real time is more problematic.

The Cracker Emcee Refulgent said...

A time of panic-induced shortage. A handful of deaths do not magically hoover the cushion (admittedly not great with everyone, from manufacturer to end user, seeking JIT) from the healthcare supply chain. Panic and hoarding did that.

The Cracker Emcee Refulgent said...

Since this originated in China, they were also first to lay claim to what was being produced. American masks to China. That should have tripped some kind of brake only there is no brake.

Bruce Hayden said...

We know what we both want, and have the legal documents. She is easier than I will be, because she knows what she wants - and that doesn’t included being on a respirator in a hospital. She was flatlined by medical malpractice a decade ago, and still has throat damage due to the emergency re-intubation (they appear to have pulled her tube out a day early, while she was mostly still unconscious, probably with iodine on their hands, causing Anaphylaxis, despite her chart clearly showing her allergy to it, compounded by the ICU having turned off the breathing monitors because it was filled with old people with apnea - so her not breathing wasn’t detected until her heart stopped). She has seen enough death close to her, that her preference is to die at home, in not too much pain. And not incubated. I am going to have to trust her, because I don’t have anyone else that close whom I can trust - certainly not my kid, who is too soft hearted. Ditto with her daughter. We both trust her son though, listing him as our backup, to make the hard decisions, if we can’t.

My mother died at 80 from ovarian cancer. She was a fighter, fighting up until her last week. I do think that she trusted her oncologist too much, who suggested an increased dosage of the first chemo drug she had been given, for her third course of treatment, despite having had indications of neuropathy, a well known side effect of this drug. Three or so dosages at the much higher level, and she was in a wheelchair for the rest of her life, and they terminated treatment. It came back, in short order. She wanted to die at home, but ended up in hospice, doped up every day on higher dosages of morphine. So, 15 years later, when my father was diagnosed with inoperable brain cancer, he moved back home, to the house my mother designed and decorated, and a week later died quietly, and I think much happier. I think that we all wish we could have done that for our mother.

My father listed us, in reverse order of sensitivity, as the one determining his end of life healthcare. My next brother, picked to be the primary one making these decisions, turned out to have been a good choice. Our father had not been happy, in rehab (while they still had hopes for him recovering). Too much noise and bother. Etc. this decision by my brother, to move our father back home wasn’t unanimous, by any means. Most of us really don’t want to let a parent go, and esp the second one. But I think now, we all agree that it was the right decision.

We do need to get our powers of attorney to the rest of our doctors. I have a copy of both of ours on my iPads (etc), so will be ready if something happens to her, but she doesn’t have a copy of mine handy. My kid does, and will presumably be called if something happens to me - but... This needs more work.

Tom T. said...

I'm with Josephbleau. Hook me up to anything. A car battery if you have to.

elkh1 said...

If I had to struggle to breathe and there was no hope to recover, I would prefer a tranquilizer in my veins to make me sleep.

daskol said...

At least older people, with foresight, can plan for this eventuality. The scary stuff is what neonatal specialists have to deal with when premature babies with terrible prognoses are born, and nobody has given any thought to the matter: our ability to sustain "life" in these scenarios, with ventilators and feeding tubes, means people have to make awful decisions.

RBE said...

My mother lives in a nursing home. She has the required directive which is a state form and is pretty clear cut. My mother decided for no CPR but decided to allow many of the other treatment options. Twice she has been admitted to the hospital ER...the first conversation with me was about "Comfort Care"...in other words keeping her comfortable while she died. They saw no CPR on the form so letting her die without any treatment seemed to be their default thinking. I brought to their attention that if her condition was treatable...that is what the form stated and what she wanted...without the heroic interventions. Both times she received beautiful treatment and recovered nicely. I think her life at 95 is meaningful.

Narr said...

It's a measure of how far we have come, that we expect to actually have some say in when and where and how we die.

I'm not complaining, I was born at the right time; but even so, in my and my wife's families these messy issues always end in messy solutions, despite the paperwork or lack thereof.

"Lucifer's Hammer" proposes that civilizations have the ethics they can afford.

Narr
We may see how much we can afford, soon.



Yancey Ward said...

Would it have mattered? Most elderly people and their families probably have had this discussion- I have had it with both my parents, and pretty much everyone I know says the same thing. I am quite sure the people this doctor is writing about did the same things with their families, but none of them thought it would be a new virus that would bring on the decision point.

I pointed out a several days ago that there were more deaths than there had been people in the ICU from this disease. I speculated that was because most of the people dying were dying at home in hospice care, or in actual hospices. I think this worked as long as there was no local panic. What has happened in Italy, and now happening in Spain and New York is that the panic got so great everyone who thought they might be shit out of luck in even getting a hospital bed started showing up in the ER, including people who had previously signed DNRs and such preventing heroic efforts.

It is just that unexpected thing about the virus, and suddenly all that talk about accepting death goes out the window. It is all perfectly human, and I think perfectly predictable.

Yancey Ward said...

Kramer's DNR

Yancey Ward said...

One thing I have been looking for in vain is details about how many people put on ventilators with this disease actually do survive? Does anyone know?

Megaera said...

Rabel: That. Exactly that. Because there's nothing particularly easy about drowning in your own body fluids, and whoever described pneumonia as "the old man's friend" was lying flat out. Nothing friendly about it. There is also this to note: if you're in an ER and reject invasive treatment in favor of "palliative care", you may -- stress MAY -- get a shot of morphine, but it won't be enough to knock you out, and it certainly won't be enough to hold you til the Reaper arrives. No hospital Hospice Unit has any authority to administer drugs -- that falls to hospice organizations with miles of paperwork and visiting nurses who give you the drugs on THEIR schedule, not yours, so passing on a vent may be something to give some more thought to-- at least if you even have the option. See: Italy.

A DNR is not a directive not to intubate (emergency breathing support), and says nothing about advanced care as such: it means only that if you are pulseless and apneic (Code Blue, so to speak) hospital staff or EMS will not essay to restore cardiac rhythm and respiration with CPR. You are required to have it with you for it to be effective, and must be signed by a doctor. The other, more complex stuff is for advanced directives, living wills, etc. All these can be overridden by a single statement from the patient himself if the attending deems him capable of understanding his circumstances.

There is no such thing as a central repository for things like DNRs, Living Wills, MPAs, etc. You have to take responsibility to see that they are on file with the hospital, the SPECIFIC hospital you're in, and that staff is repeatedly reminded of this because they often forget, don't check, or get sidelined by the Code Blue or stroke alert all hands on deck and never get back to it. Have multiple copies of all these docs, complete sets for any hospital you're in, and be sure they're up to date. Absolutely talk about all that stuff with everyone you might wind up responsible for -- if you don't you'll be sorry. If you do, you may be sorry too, but at least you'll have tried to do the right thing. Do the same with anyone who might wind up responsible for you.

Yancy: I doubt you'll find any quantification of what you're asking for, don't think it's possible, especially in light of the Associated Comorbidities issue plus age considerations all aligning in COVID 19 cases. Maybe there will be an assessment for younger pts outside the 60_+ age range, but it won't surface for a while yet.




iowan2 said...

The ER doc is using this opportunity to speak out about basic life skills. The COVID-19 event is happening now, the media is using its 24/7 news cycle to pimp for Dems, and have politicized the medicine. While an influx of patients may have brought the shortcomings of peoples lack of medical directive preparation, in a couple of months, the emergency will pass, and so will the opportunity to try to educate the public. If the Dr would have tied the use of medical directives to this event, people would think when this is over...so is the need for pre planned medical directives.

But this is basic living live knowledge that everyone should have covered.
Last month I was talking with one of my peers working one the part time jobs I have in retirement. He was saying he and his wife had cashed out the wife's life insurance and paid for the funerals and grave sites. I said, "I assume your good planning includes a living will?" Nope. cant get around to that. The point of the story is, Living wills are either unknown by people, or scare people that do know they exist.

Talk to your family and get the paper work done.

The Minnow Wrangler said...

We are all going to die from something sooner or later. I don't want to bankrupt my family or spend my life savings on a hopeless cause when that money could go to my children. My father died from dementia but it took him two years in an expensive hospice home, where he violently assaulted his nurses and caregivers. My dad was a very strong man, a former college wrestler. If he was in his right mind he would have never done anything to harm a woman. Lord please spare me from a protracted death of any kind.

The Minnow Wrangler said...

It is good to have instructions in place. I have that.

The ideal death is a brief fatal illness, where everyone knows your are going to die but they still have time to come and say goodbye.

Sudden deaths like strokes or heart attacks are very hard for your loved ones.

bbear said...

Advanced directives have little to do with the current pandemic, and life support measures like ventilators typically are a feature of the ICU, not the Emergency Department. Thanks for reading the WaPo & NYT so we don't have to.

jimbino said...

I'm in favor of a policy that allowed each dying person the right to specify a politician to descend to Hades along with him, for the good of his left-behind relatives and the American People in general.

I also favor prohibiting the requirement of licensing of sex workers or health-care workers. Indeed, I'd much prefer spending my dying hour with the former. Of course, the latter will work to prevent that, just as they work along with their institutions to prevent whatever it is that serves my final wishes, including alcohol, a cigar or even an atheist chaplain, for Chrissake.

In Amerika, you're forced to put up with gummint-imposed health care and insurance, licensed Amerikan caregivers who don't speak English, like the docs who say, "data is" or "at risk for cancer" and who regularly use the singular "they" as in "when the parents bring the kid in, be sure to circumcise them right away."

In the USSA, you can't find a proper doctor by med school attended, reputation, certification, word of mouth or Yelp. You may as well rely on his English usage. And forget whether or not you can find out what it is he charges for his service. Their whole profession depends on keeping hoi polloi in the dark.

It's a good thing that it's so easy in life to find a great Mexican roofer or housekeeper, but it's so sad that the face of an Amerikan-certified physician might be the last one we see in death.

Mark said...

My parents signed HCPOAs years ago. When my stepfather went into the hospital, they were shocked/alarmed that it mentioned withholding food and water and other things they considered ordinary, routine care. He was in a Catholic facility though, and they told him that they didn't do that kind of thing.

Mark said...

Too many of these advanced directive documents are preprinted forms or come from the same template -- nearly all of which are from a utilitarian, quality of life, fear-mongering, quasi-assisted suicide perspective.

Nichevo said...

In Amerika


J, you're so hateful and disrespectful of this country. If the "USSA" were like the USSR, and, for your defiance, killed you, or sent you to the gulag, or starved you, or punished/controlled you with electroshock and stelazine, what moral right would you have to complain?

If you were caught shagging your rentboy in Rio - or hell, if you did nothing wrong - and the Brazilian cops got you on their radar and wanted to make you sorry, do you think you would be treated better there or here, and which would you endorse?

You're allowed to be a traitor, I guess, but what's your motivation? What broke you?

BTW, are you as much of a language snob in Portuguese as in English?

Yancey Ward said...

Thanks, Megaera.

jimbino said...

@Nichevo

News to you, I'm sure, but your moral rights don't depend on which country you're living in. Jefferson and Madison got it right.

While Brazil was retarded in ending slavery, the Cariocas have a lot more freedom than do Americans in many ways. Amerikans generally can't even carry open booze, wine or beer in the streets, much less drink it 24/7. Brazil has given brown and black citizens, and even women, the right to run, and even gain, the presidency. Here, we run federal public lands (parks and forests) that never see a black or brown face, from Glacier Park to Mesa Verde, though we tax all Amerikans for maintaining them.

In Brazil, a pubescent can pretty much choose his/her hetero/homo sexual partner, which a 17-yr-old can't in Amerika. As Wikipedia says:

In Brazil, the age of consent is 14, regardless of gender or sexual orientation. Although not legally formalized, there is judicial precedent allowing a close-in-age exception for those aged 12–13 to engage in sexual activity with partners who are as much as 5 years older.

As many have noted, a Chinese citizen enjoys more day-to-day freedom than an Amerikan does.

Mark said...

Who are these "many" you speak of bino?

Nichevo said...

Wasn't it Brazil with the death squads? How does Miranda work down there? Haven't the last, two, three leaders there gone to prison?

DavidUW said...

Shoot me out of a cannon.

jimbino said...

@Nichevo

If we had as much Rule of Law in the USSA as has Brazil, Bill, Hillary and Trump would be in prison too and Blago wouldn't be running free.

@Mark
Who are these "many" you speak of bino?

Numerous journalists, including "Serpentza" and "Laowhy86" of Youtube fame who've lived over a decade in China and who have married a Chinese and speak fluent Chinese. So you've got a lot to learn!

Larvell said...

Interesting, he seems to think everyone wants to die, they just haven’t properly expressed it yet. I’m sure the pressure to be thoughtful and just die already won’t increase when the government runs everything.

J. Farmer said...

"Whatever you do, don't pull that goddamn plug."

Nichevo said...

J-Fo, you're back! How was it?

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Bob Loblaw said...

This guy must be fun at parties.

Bob Loblaw said...

Last summer my elderly mother fell unconscious after a brain hemmorage. She was kept alive long enough for us to gather and decide what to do. She was intubated and never regained consciousness. Fortunately for us, she had made the decision not to live under such conditions.

We were in a similar situation with my dad in the fall. We allowed them to put him on a ventilator when it seemed like he might recover, but we had them shut it down when they told us he would never regain consciousness. It was the hardest thing I've ever done, even knowing that's what he wanted.

stlcdr said...

Is this any different than any other time? But typically, people who go to, or are taken to, the emergency room want to be saved? Perhaps deferring to the families for guidance?

As a follow up, are emergency room and hospitals close to straining point? Understandably, there are shortages, but really, are they at the point of deciding who gets what resources to live or die?

I don’t know how people in emergency rooms do it - surrounded by death or the potential - every day, but I have a feeling at minimum, it distorts your outlook on life.