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.