Musings of a Dinosaur

A Family Doctor in solo private practice; I may be going the way of the dinosaur, but I'm not dead yet.

Wednesday, September 30, 2009

The Dirty Little Secret about End of Life Care

Since the first in my series of "Dirty Little Secret" posts went over so well, here's the next one. Unlike the first, though, this one really is directed at patients as well as doctors, so listen up everyone:

Unlike Sarah Palin the politicians and talking heads discussing non-existent "death panels," I have had many conversations over the years about options for medical care at the end of life, with lots of patients of many different ages and situations. Interestingly, just about everyone ends up saying one of two things.
  1. Just keep me comfortable and let me go; no heroic measures; etc. or
  2. I want everything done.
The problem is that very few patients really understand what "everything" means, in all its gory, grotesque, excruciatingly painful detail. The needles, tubes, drugs, restraints, surrounded by all the machines; the blinking lights and beeping alerts that never stop (there are so many, there's always one or more going off at any given time); the cracking of ribs and smell of singed hair at the final resuscitation, with the same inevitable result. Who in their right mind would want to go through that?

The answer, of course, is that no one would. The only reason they say otherwise is because they don't understand what it is they are asking for. It is therefore our job as physicians to explain to them -- as bluntly as necessary to ascertain comprehension -- why "everything" is not really what they want.

Think about what this means. It means that once everyone fully understands the horror that is "everything," it becomes safe to make the default assumption, when presented with a stranger in extremis, that they want to be kept comfortable and allowed to exit this world with dignity.

A significant problem arises when people conflate the issues about medical care at the actual end of life -- when it is medically apparent that death is inevitable -- with questions about quality of life. Is life worth living tethered to a ventilator? How about dialysis three times a week for five hours? What if you couldn't eat or talk, sustained by tubes in your stomach and neck, but were able to see, hear, communicate (via computer or even pen-and-paper), walk, drive, etc.? How much discomfort would you be willing to tolerate from chemotherapy side effects for another month of life? How about six months? A year? These are different questions that deserve different discussions.

Interestingly, when those discussions are held in advance of their actual need -- ie, in the hypothetical -- people who say things along the lines of, "I would never want to live like that," frequently find themselves with different views when faced with the reality of the situation. (Ironically enough, these same people are often reluctant to accept other people's decisions. I once had a ventilator-dependent patient who requested its removal, knowing it would lead to her death, and was confronted by medical professionals appalled at my plan to accede to her wishes.)

So where does that leave us in terms of "advance directives"?

It is meaningless to discuss "how would you want to live?"-type issues in the purely hypothetical, because the discussion will always be repeated when the actual situation arises. It's like discussing college with a pre-schooler. It can be discussed in generalities, with the understanding that actual decisions can't be made yet, and that opinions expressed now are very likely to change.

As for actual end-of-life care, informed patients just want to be kept comfortable. Uninformed ones, those who want "everything" done, need to be educated as to why they do not, in fact, want to be tortured to death between CPR and the ICU. Ultimately, the default becomes what it should be: dignified comfort care for all.

At this point in time, we physicians need to concentrate our efforts on expanding the general public's understanding of the limitations of aggressive interventions at the end of life. Some may wrongly construe this as an attempt to limit patient "choice" inasmuch as a specific course of action -- "doing everything" -- needs to be actively discouraged. As physicians, we have an obligation to prevent our patients (and their families) from inadvertently increasing the suffering that ensues from futile end-of-life care. This is best accomplished with compassionate education. Whether this occurs in the context of an office visit or a concerted public service campaign matters little. We need to change the cultural default in this country from "do everything" to "comfort care only." Americans have to grow up and realize that they are not immortal.


At Wed Sep 30, 04:37:00 PM, Blogger Doctor D said...

Seems a bit of a generalization to say the only reason anyone would want "everything done" is ignorance.

I certainly recognize a low yield code situation when I see one, and don't prolong these codes past the early point of no return. But there certainly are reasons reasonable people could desire full code even with a low likelihood of success.

Often people don't trust physicians to be able to recognize when an intervention would be beneficial to them or not. I wish I could say this doesn't happen but I have seen physicians use other considerations--such as desire not to be busy to decide an intervention isn't worth doing. I have also seen physicians treat DNR orders as a request for no treatment at all, even of easily reversible problems.

Each patient has different values as to what they want from their end. For some an extra day to allow family to arrive and say goodbye while their heart is still beating is more valuable than a pain-free end.

The mental stress of breaking the ribs of a frail old person in a code is frustrating to me too, but grandma in PEA never feels it if she really is already gone. We need to be very careful about appearing to impose our values over a patient's values.

I'm not one of those "do everything" doctors. I really don't like coding the elderly. My grandmother is DNR and I would be too at her age. I'm just saying that our job is to educate patients and then work for them according to their values not our own.

If we say anyone that makes a particular decision must be ignorant, patients will see this as us disrespecting their values. I know you didn't mean it like that, Dinosaur. I know you care about patients and respect them deeply. --But if I were an patient with different values reading your wording in this post I might have misunderstood your intent

At Wed Sep 30, 06:54:00 PM, Blogger Dreaming again said...

My husbands requests are really complicated. Mine, not so much. Make DAMN sure it's not the MG before you let me go. If it's the MG (Myasthenia Gravis) then you better be damn sure that it's not a severe crisis and I can't be brought out of it ...

My husband .. cannot be intubated. If he is, he's permentently on a trach and does not want that. (his lungs are too fragile ...)
He became very ill a couple of years ago. We had the end of life discussion with the doctors ..what measures to take or not .. ( I say we .. it was his best friend and I ...HE was in a coma)

He shocked everyone by pulling through ...but then he was going to be bed bound ...then wheelchair bound, then walker bound ...and now with the exception of dependency on a bipap when laying down (not enough muscles to breathe in the prone position...thanks polio ... ) he's back to where he was before he got sick (but it took 2 years!)

At Wed Sep 30, 08:16:00 PM, Blogger Midwife with a Knife said...

I actually think that the reason people say they want everything done is because they don't really understand that the prognosis is hopeless. It's not that they don't understand the process, they just don't realize the likelihood of a good outcome is vanishingly small.

For myself, if I just have a pneumonia with ARDS, please DO EVERYTHING. If I have a hypokalemic arrest, do everything. If I have an advanced and widely metastatic solid malignancy and massive sepsis, well, I understand that that's pretty much game over. And even though you can give me a million miligrams of linezalid (or antibiotic de jure), ultimately it's game over and I really would want to just be kept comfortable. And if I have an unwitnessed arrest from anything other than hypothermia, then please, leave me alone.

But seriously, I think as docs we need to come to some agreements as to what futile care entails and simply stop offering it. I think that the care of the terminally ill is the only time we routinely offer treatments which we as doctors view as futile. And sure, ICU care may be painful (although also maybe we don't palliate as well as we should in the ICU), if you might survive and have a reasonable quality of life, it's worth it. If you're going to die anyway, it certainly isn't worth it.

And although it isn't always clear, there are a few cases where the mortality is ~100%. This is why my hospital does not offer NICU care to 22 week infants. The mortality is 100% and the care is painful (and expensive) for the infants and families. There are certainly plenty of cases in adult medicine with similar odds in which the patients end up intubated and lingering in the hope (without evidence) that we may survive.

If I can decide to not offer a procedure (such as an appendectomy) because it won't achieve the goal (let's say treating migraines), why do we send the dying to the ICU to die in the first place? ARen't there cases where we've already done everything we can do before it comes to the gory grotesque and excruciatingly painful stuff?

At Wed Sep 30, 11:36:00 PM, Blogger Reality Rounds said...

"This is why my hospital does not offer NICU care to 22 week infants. The mortality is 100% and the care is painful (and expensive) for the infants and families."

This is such an emotional subject, especially when infants are involved. I wrote a post about the ethical implications of resuscitating 21 week infants:

Even though the survival rate is essential 0%, with those surviving 22 weeks having profound neurological impairments, I was vilified for even suggesting that any life not be saved at all costs. I have very thin skin, and being called "a baby killer" and that I should lose my nursing license for not condoning resuscitating non-viable infants, is getting to me. This same subject is applicable across the age spectrum.
Even though we are speaking in realistic terms, the lay public does not seem to get it. It is disheartening. Why bother blogging about it?...sigh... I think I will quit.

At Thu Oct 01, 10:55:00 PM, Anonymous mamadoc said...

My mother, God love her, has provided all her children with her very detailed living will, with extra lines about "no blood trasfusions and no operations" if she becomes incapacitated. (All she left out was "please remember to trip on the ventilator cord if some fool puts me on one.") This is a wonderful gift to adult children, who don't have to wonder what Mom wants. I agree with you--old folks with unresovlable condidions who want everything done do not know what "everything" is and means.

At Sun Oct 04, 06:17:00 PM, Anonymous Doug Iliff, MD said...

Excellent point, Dinosaur. I came to the same conclusion in the last two paragraphs of my article on the health care debate:

At Mon Nov 23, 10:57:00 PM, Anonymous gato said...

I totally agree with you. My father in law was put through so much at 90, when all he wanted was to go home and die there.


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