Monday, May 14, 2012

Mostly Dead vs Completely Dead: A Distinction Best Left to Hollywood



I was at a dinner a meeting of the Greenwall Faculty Scholars, a bioethics career development program for junior faculty, when an interesting issue came up.  Several folks at our table argued that patients who donate organs after cardiac death are not "Dead" (capitol D) at the time the incision begins to harvest their organs.  The question that arose was - should patients, families, and transplant doctors be informed that the patient is not completely "Dead" before organ procurement begins?

I am no transplant surgeon, but here is my basic understanding of the issue (with backup from these two articles in NEJM here and here).  Patients who donate after cardiac (not brain) death are often kept alive using life-sustaining measures, such as mechanical ventilation supplied via a breathing tube, and medications that increase a persons blood pressure.  In some situations, with the consent of the surrogate decision maker, the patient is taken to the operating room and IV catheters are inserted and heparin pumped into the organs to prevent blood clots from damaging them.  Life-sustaining measures are stopped, the pulse stops (not electrical activity, the pulse), and the transplant surgeon waits two to five minutes after the pulse stops before making an incision to harvest organs.  At this point, several folks at our dinner table stated that in many cases the patient could likely be revived using CPR and re-institution of life-sustaining measures.  The brain could expect in many cases be expected to return at least some function after resuscitation.

Some at our table argued that patients, families, and physicians should be informed of this issue.  The argument is based on the longstanding tradition that families be fully informed before they make a decision.  The argument is that we owe it to patients and their families to be truthful about such momentous life and death decisions.  If patients and families get wind that doctors are not being truthful, this could erode their sense of confidence in medicine in general, and the transplant enterprise in particular.

Several of us disagreed.  We disagreed for two reasons.  First, the distinction is meaningless to patients and families.  Even a sensitive conversation is likely to be more confusing than it is helpful.  For example, something like, "Your loved one has a condition that will result in a lack of blood flow without the use of machines.  Most people would consider this condition to be death, although it is not strictly death from a medical standpoint.  With your consent..."  This sort of conversation is inevitably going to lead to a great deal of confusion at a very difficult time for families.

There is an infamous scene in the Princess Bride where where Miracle Max, played by Billy Crystal, explains the distinction between mostly dead and completely dead to Inigo, played by Mandy Patinkin.


                         INIGO
                  (stupefied)
             He's dead. He can't talk.

                         MIRACLE MAX
             Look who knows so much. Well, it
             just so happens that your friend
             here is only mostly dead. There's
             a big difference between mostly
             dead and all dead. Please open
             his mouth.

Inigo does. Max inserts the bellows in Westley's mouth and
starts to pump.

                         MIRACLE MAX
             Now, mostly dead is slightly
             alive. Now, all dead...well, with
             all dead, there's usually only
             one thing that you can do.

                         INIGO
             What's that?

He stops pumping.

                         MIRACLE MAX
             Go through his clothes and look
             for loose change.


Attempting to explain such distinctions in the real world will make families wonder if there is a possibility their loved one could live, just as they are coming to terms with their death.  The farcical Princess Pride aside, semi-realistic Hollywood movies propagate this fantasy (think Flatliners). Such distinctions are best left to Hollywood.

The other reason for not disclosing the distinction has got me thinking the most.  One of the people at the dinner table was friends with a transplant surgeon who refuses to make an incision unless the patient is declared "Dead."  Even if this is a fiction, it may be important to maintain for reasons that are not completely rational.

It's clear that the surgeon will not be the cause of the patient's death - the disease that led to the cessation of effective circulation of blood flow is the cause - but it still may matter to the surgeon.  And the reason it matters is not rational, or based on ethical principles, but rather irrational, based on emotion and a visceral reaction.  There is something qualitatively different about cutting into a person who is dead and removing their organs than cutting into someone who might be alive.  This is similar, for example, to how there may be no ethical distinction between withdrawing and not-starting life-sustaining treatment, but the reality is that they just feel different to patients, families, and clinicians.

A terrific recent New York Times article discussed just this question: how much weight we should give to irrational motivations?  The article was hilariously titled The Amygdala Made Me Do It, and describes the invasion of "Can't Help Yourself Books" in the lay press, including "Thinking, Fast and Slow" by Nobel prize winner Daniel Kahneman.  The article concludes:
Does this mean we have no “agency,” no capacity to act on our own? Or can autonomy thrive within the prison of self-ignorance? “We have to believe it does,” says Steven Lukes, a professor of sociology at New York University highly admired for his work in moral philosophy. “If we seriously thought that our intentions made no difference to how we behave, we couldn’t go on using the language of ethics. How would we go on living the lives we live?” Or doing what we think is right? “People have free will when they ‘feel’ they have free will,” says Professor Kahneman. “If we didn’t believe in it, we would have no responsibility.”
I think both are true.  On the one hand, we must strive to understand the logical, rational, ethical reasons for our actions and strive to use normative reasoning to guide our actions.  On the other hand, we must acknowledge that these irrational reasons carry some weight, like not wanting to cut into a person who might be slightly alive, even though such distinctions may be meaningless.  And perhaps in some cases, such irrational reasoning will lead us to maintain what is technically a fiction: believing people are Dead when in fact they are only dead.

by: Alex Smith

14 comments:

Catherine DuBeau said...

The best Hollywood version of this distinction comes - of course - from Monty Python, in the immortal "But I'm not dead yet!" scene: http://www.youtube.com/watch?v=dGFXGwHsD_A

Anonymous said...

Organs are only recovered from a dead donor. The donor may be brain dead with complete and irreversible cessation of all brain function or the donor may have cardiac death. Organs are NEVER procured from a donor that is alive. Donation after cardiac death is when a patient has life sustaining treatment withdrawn, no CPR is to be performed at death, and the heart stops. A waiting period of 2-5 minutes of PEA/asystole and apnea occurs and death is declared. The heart can not auto-restart after 60 seconds of asystole. Organs are recovered. This type of donor is dead.

Alex Smith said...

Catherine, excellent point. One of my favorite Monty Python sketches.

Anonymous - even brain dead patients may not be Dead. For cardiac donors, the asystole is absence of a pulse not electrical activity. Again, the caveat, I'm not in the transplant field. This is not my area. Those who know more please continue to disagree, protest, argue. I fully admit I may have not have the right grasp of things.

See this paper by Miller, Troug, and Brock

Here is the abstract:

Transplantation of vital organs has been premised ethically and legally on “the dead donor rule” (DDR)—the requirement that donors are determined to be dead before these organs are procured. Nevertheless, scholars have argued cogently that donors of vital organs, including those diagnosed as “brain dead” and those declared dead according to cardiopulmonary criteria, are not in fact dead at the time that vital organs are being procured. In this article, we challenge the normative rationale for the DDR by rejecting the underlying premise that it is necessarily wrong for physicians to cause the death of patients and the claim that abandoning this rule would exploit vulnerable patients. We contend that it is ethical to procure vital organs from living patients sustained on life support prior to treatment withdrawal, provided that there is valid consent for both withdrawing treatment and organ donation. However, the conservatism of medical ethics and practical concerns make it doubtful that the DDR will be abandoned in the near future. This leaves the current practice of organ transplantation based on the “moral fiction” that donors are dead when vital organs are procured.

Eric Widera said...
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Eric Widera said...
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Eric Widera said...

An interesting post Alex but I have to question those in the group who argue that the patient isn't "Dead" at the time of harvesting organs because "in many cases the patient could likely be revived using CPR and re-institution of life-sustaining measures. The brain could expect in many cases be expected to return at least some function after resuscitation" (if that is what they were indeed arguing).

As someone who does a lot of death pronouncements in an inpatient hospice unit, I have declared a fair amount of individuals Dead even though patients technically could potentially be revived using CPR (success rates would be very low though). Their goals of not wanting this type of intervention gives it the critical distinction, moving something from potentially reversible into an irreversible cessation of circulatory and pulmonary function. Same thing applies in these cases, the goals of the family turns what could be a potentially reversible cardiac event (I guess preventable over the immediate short term would be more appropriate for most of these cases) into an irreversible cessation of cardiopulmonary function. Thus, just like the hospice patient that I declare Dead, these patients who die in the OR are indeed Dead (capital D). It is without a doubt irreversible, not because we can't potentially reverse it, but because the patient or their family members don't want us to reverse it.

In the end, death is only death if there is permanence to it. Everything else just isn't death.

(I also wrote a little bit about this in a rant I did 3 years ago on a Sanjay Gupta Book) http://www.geripal.org/2009/12/cheating-death-book-lost-in-definitions.html

Alex Smith said...

Good point Eric. If I'm understanding you correctly, you're saying is that they are dead by intention, not by fact, because in fact they might be resuscitated but nobody intends to do so. I think some would view this as not dead, not permanent.

But your point is well taken about the hospice patients. While I ordinarily do not pronounce them dead until well after they have died (10 minutes or more), on occasion I've been there when the patient has died and pronounced them. They do seem dead in the sense that no one intends to attempt to resuscitate them. So perhaps intention does matter.

Eric Widera said...

Well I guess dead in "fact" would always be difficult except in hindsight. Let's say I run a code for 15 minutes and then call it, and then I pronounce the patient dead because I no longer think his condition is reversible. Time of death 5:43. Now are they dead by my new intention not to continue ACLS or are they dead in fact?

Now what if another physician comes running in the room and says "wait" you forgot to do X, and they quickly perform X and the patient regains circulation. Did the patient die and is now brought back to life? Well, by the medical-legal definition, they never really died at 5:43, as the cessation of cardiopulmonary function was not irreversible.

What if the physician never came in to tell me about X, but looking back in the chart one week later I realized that I forgot to do X and that it was indeed potentially reversible at 5:43. Should the time of death still be 5:43?

onlineprof10 said...

My concern is this: doctors must be honest with families. They may not withold information "to make things simpler." Patients and families are consumers and they have a right to know ... they are not without intelligence or common sense. However, these discussions need to take place NOT at the moment of cardiac or brain death, but before... if at all possible!
If person decides to be an organ donor, perhaps then that issue might be addressed, along with other advanced directives.

Maurice Bernstein, M.D. said...

You know, "when does life end?" faces the same dilemma as the current concerns about "when does life begin?". It all depends on decisions of the "when" by those who are alive.
Maybe some biologic answer will never be found or, if found, accepted by everyone. ..Maurice.

mbevmdphd said...

The next time someone tells me a patient is dead, I think I'll respond, "You keep using that word. I do no think it means what you think it means."

I tend to think the recently pulseless patient is actually and in fact dead (or Dead). What change takes place in the body after, say, five minutes of being without a pulse or respirations that makes the person Dead? It seems that no change takes place in the body, but that at some point certain phenomena are considered irreversible. This would suggest that death is not a property residing in the body, but a function of our technology. Given this, I see no difference between lacking the technology to reverse this state and deciding not to use what technology we have. We like to think death is an objective phenomenon, a moment, that we simply observe, but the reality is a person is dead when we decide he is.

Alex Smith said...

mbevmdphd: LOL! Too funny. That should have been the title - Dead: I do not think it means what you think it means.

In all seriousness your point and Eric's are well taken. Got me thinking - Are cyrogenically frozen people dead? There is the potential to revive them in the future with some as yet undiscovered technology. Does that mean they are not dead, because they intended to be revived?

Eric Widera said...

What again do they say in the ER - "nobody is dead until they are warm and dead."

Dan Matlock said...

This is easy guys: Life begins when the soul enters the body and it ends when it leaves the body...I'm not sure what all the fuss is about.