Brain death and uncooperative families

Louis Brusco Jr., M.D:

A situation came up the other day and I wondered how others would have handled it.

58 year old male with intracerebral hemorrhage. Herniates 4 hours after SICU admission despite all therapy. First exam for brain death protocol at 7 a.m., second at 2:30 p.m. Patient is now legally dead, but blood pressure stable. Family approached for organ donation. I got the sense (as did the transplant counselor) that it would be a less than even chance that they would donate. They said that they could not make a decision now, and wanted to wait until the next morning, when his parents would be here from out of town, before making any decision. It was explained to them that we normally would have disconnected the ventilator by now (it is now 6 p.m.), that we have kept the ventilator going so that they could pay their last respects, and that the only reason that the ventilator is going still is because of the possibility of organ donation. Family gets angry, says that they have rights and that we cannot just disconnect the ventilator like that. I explain to them the hospital poicy, and tell them that if they cannot decide about organ donation now, we will have to disconnect the ventilator. Patient's wife gets angry, makes a legal threat, and hangs up.

What do you do at this point?

  1. Disconnect vent without waiting for family to show up?

  2. Call them back, tell them that you will be disconnecting it in one hour, whether they show up or not?

  3. Call her back and offer to keep the vent going over night if they agree to donate organs?

  4. Keep vent going overnight to accede to their wishes in hope of getting organ donation?

  5. Keep vent going overnight to be a nice guy, without thought of getting organs.

Most likely his lungs and kidneys would have been donor candidates. Does the fact that the lungs are good (one of the more difficult organs to salvage) make any difference in your thinking?

Tom Bleck:

Here in Virginia, and in most states of which I am aware, the diagnosis of death by brain criteria is death, and no legal action can be taken to reverse the diagnosis or to prevent one from discontinuing support which is futile for the patient (and the only purpose of which is to maintain the organs for potential transplantation).

That being said, a family that cannot accept the diagnosis of death by cerebral criteria is, in my experience anyway, unlikely to accede to organ donation within a useable (for the organs) period of time. My own feeling, and practice, has been to put the patient out of the ICU in a regular bed (may require a special dispensation for the ventilator in some hospitals), and allow the family to stay with the corpse for as long as they wish. Without fluids or vasopressors the blood pressure is almost never maintained for more than a day or two. We don't draw blood, do chest films, or anything else except occasional suctioning to decrease the family's distress from the sound of rattling secretions. I know there are many people who think it is wrong to keep ventilating a corpse, but as long as resources are not being diverted from the living and potentially salvagable, I don't see this as a major ethical problem.

David Crippen:

I agree with Tom Bleck. Familial sabre rattling is a form of expressing their hostility at the situation and, of course, letting you know that they, not you, are in charge. If all the "i"s and dotted and the "t"s are crossed, they have no legal recourse in most states, but they can make your life pretty uncomfortable, and they would find a lot of secondary gain in doing so. You become the sporting event that brings them all together.

I kind of like Tom's idea of putting them and the unfortunate patient in a room together and stepping out of the picture. Clearly they cannot make you add additional support to maintain viability of a warm cadaver. It is for them to come to whatever closure they choose. This puts Lou out of the manipulation loop. Their only recourse is usually manipulating themselves.

David Crippen:

Simon Finfer says: Why are they being manipulative? The passing of a next-of-kin is a major and shocking event in their lives. As told, they have had poor options and poor choices put to them.

In this event, I am not sure I am willing to agree that the choices are unfair, they are just unfortunate. There is no difference between brain death and legal death. Sooner or later they must be appraised of that fact. It would seem that if they flatly deny the reality, further diatribe on the subject must be manipulative by implication, . And if it is manipulative, is it better to manipulate back to them or simply refuse to enter the loop?

Phil Factor:

Our hospital serves an indigent population on the near south side of Chicago. As such our patient popultation typically is poorly educated and frequently have very strong religous perviews. We encounter your situation 1 or 2 times per month. Typically, when the family says they expect relatives to arrive the next morning they don't show up for days, if at all. Thus our policy, after pronouncing the patient dead, is to disconnect the ventilator, unless organ harvest has been planned. Even when beds are available the cost of maintaining these patients redirects resources away from other patients.

John Herbert:

I would like to keep the vent going in hopes that they will reconsider and not be pissed off at our direct approach. As Lou and I well know, it is very difficult to get donated organs in New York, but every ethnic group is willing to receive.

Don Chalfin:

Interesting issue Louis and one which happens often enough to be memorable. You're faced with the imperative of healthy organs in a legally dead patient that you cannot harvest because the family has not come around to accepting the inevitable at a medically convenient (that is to the nameless donor) time.

These situations are usually easier in patients who are elderly and/or afflicted with multiple organ pathology: often difficult in younger, healthy patients who suffer sudden catastrophic, fatal events such as traumatic injury or massive CVA's. When I have faced this situation in the past, I usually wait until the family "comes around, partially because the families need time to come to grips with the situation. This usually happens quickly(i.e. hours): I don't recall an incident where a brain dead patient lingered on full mechanical support because the family refused to accept the situation.

Had a case years ago, a 14 year old girl with aplastic anemia, who was initially admitted for sepsis, was doing well when she had a sudden ICH leading to rapid herniation and brain death (criteria appropriately documented). She was a Jehovah's witness and remember a quote from the family that: "if the heart is still beating there is still hope for life". Was faced with the same "vitriol" as you were when I approached the family about removing all support, and the patient subsequently expired without active "removal of support".

Your scenario, however, has the initial imperative of organ donation and the need to expeditiously proceed. Would recommend a few alternatives different from what you describe, which may help expedite things and give a nameless recipient some meaningful hope:

  1. Consultation with a neurologist. I know that they are not going to provide any new information from a clinical standpoint, however, the family may respond well if told about the situation from "an expert". I gather however, that this was probably done as part of the "legal definition for brain death" (NY State rules).

  2. Malcolm Fisher will probably choke at this suggestion, however, this may be a situation where an ethics committee should be expeditiously convened. You have a dead patient, a distraught and potentially hostile family which does not want to part with their dearly beloved, and the stated threat of legal action which, even if the hospital were to back you up and support you in full would result in a delay which would solve the question of organ donation for you. This is one of the few situations where an ethics committee may serve a meaningful function and allow you to proceed to the benefit of one or more nameless recipients.

Aviel Roy-Shapira:

I would wait for the parents to show up. I think this request is legitimate, and the organs are too valuable.

Stephen Streat:

Louis Brusco asksed what we would do in a difficult potential organ donor situation. (Ain't these situations just the pits ?)

I have a few questions and comments.

I always deal with the issue of withdrawal of IPPV before the issue of organ request. This means that I make sure that they understand that "shortly, at a time which is appropriate to the family, after you have said your goodbyes" that "We WILL withdraw the ventilator and because his brain is dead, he will not breathe at all and his heart will stop in a few minutes".

I find that if they understand that, then the issue of organ donation (and the timing of organ retrieval) become easier to deal with. I try at all times to avoid head-on conflicts with families about the timing of withdrawal of therapies (both in brain death and when the situation is futile for other reasons). I am at my most sensitive, manipulative, cunning, devious and controlling best at such times (all the while being aware of the need to be seen to be aware of the families needs.. whew).

Being a country without transplant counselors, respiratory therapists, physician assistants and clinical ethics committees the responsibility for organ requesting is an intensivists responsibility (and no-one elses). We don't set concrete (only indicative) timelines for ventilator removal - however we are probably fairly quick about it by international standards - median time till organ removal = 6 hours, usually IPPV removed an hour or two earlier if family decline organ donation. We do sometimes accept the request to "please wait till his brother comes from Australia (they all have at least one relative in Australia)". This usually means another 6-12 hours. Sometimes we have to say "Sorry, no resource, no can do".

We have had a few Japanese families who have had the greatest difficulty accepting the concept of brain death - for a variety of reasons - I think that it is not just because of the religious viewpoint (death only occurs after all evidence of biological life is gone) or the fact that there are no braindeath laws in Japan but (anyone else remember neurolinguistic programming ?) because the kanji character for "mind" is the same as that for "heart" and this linguistic level there is a deep resistance to the idea of braindeath. On one such occasion I repeated the brain death examination a third time with the assistance of the patients father (who was a Japanese biology teacher) and this was a facilitating experience for him in accepting the concept and in allowing him permission to grieve. Even after this he said - "My western mind tells me he is dead but my Japanese heart tells me he still lives". Nonetheless - we have continued IPPV (air, hypercarbia, no inotrope) for a day or two till heartstop in other similar cases where IPPV withdrawal would have produced gross family distress.

Questions : who mandates the timing of ventilator removal in brain death ? What is in the way of waiting till the (pretty ancient) parents arrive tomorrow (other than the fact that you have already given them a "soft" ultimatum)?

We think that twelve hours IPPV is a small price to pay for two kidneys and two lungs (why not liver as well ?) and even if the probability of permission was above about 20% would probably continue. We have consent rates of about 60% for non-Maori, much lower for Maori (cultural belief about "wholeness"). Incidently, we speak to our donor coordinator before asking for consent for organs - s/he makes the appropriate calls and calls us back so we have a full "menu" sorted out before hand. I find that this helps - some families just say "take whatever you want, Doc", some say "what organs would you want ?" and to be able to discuss the specifics for this situation removes another of those "uncertainties" which can tip the balance between a "yes" and a "no" for those that are having trouble with the decision. Incidently - not that I have had anyone make a "legal threat" in this context but I would have a strong hunch that this did not bode very well for the success of your request ;-)

George Sample:

Don't waste the organs ,if possible.Each of us has our own tempo and mannner for dealing with grief.Let them rant while the "corpse is ventilated"You may help some soon to be corpse recipients.Good luck.

Simon Finfer:

You need to get the conflict out of the situation, not exacerbate it. These people are losing a member of their family, they will live with the "process" for the rest of their lives and may feel that maintaining some control of the process was the last thing they could do for their loved one. You are in a position of power on your home turf, they are in an alien environment, distressed and shocked, one outlet for that will be anger, blame and litigation. It's your move....

PS. The discussions need compassion and rapport, I find that hard on the car 'phone.

Aviel Roy-Shapira:

I think this becomes an issue if you need the bed for another patient. If you do, then you should indeed put a time limit on the family, and then disconnect. If you don't, I would still wait, on the off chance that the parents may push for a donation.

The legal threats are meaningless. A dead patient is dead, and you are under no obligation to ventilate a corpse. In fact, you have an obligation not to do so. This obligation can be waived only if there is a legitimate chance that some other life would be saved, by mainting the corpse for a few more hours.

Todd Dorman:

There are two major threads here:

  1. Everyone deals with death differently, and as human's physicians aren't exempt. What I mean is we all state rules, criteria, and timelimits, but then follow those statements with exceptions. Medicine is not simple! The answers vary as the situation varies. Our role is to help the dying die with dignity and the living part with grace.

  2. No one believes in bartering for care. Not with the living and certainly not for donation.

Rod Lichtman:

We never disconnect but tell the family that "nature will take it's course" and then add a 60ml dead space into the circuit. Call it dishonest, but for our situation it seems a gentle way to cope with a situation extremely distressing to the family.Different phases of mourning: denial, anger ...etc. Fighting with family while they are going through this is unproductive , they wont consent for organs.

Michael Williams:

Seems to me the question to ask is not "What do you do at this point?", but rather "What do you do to prevent this in the future?"

As I look at the interaction you described, the family was essentially told that the SICU saw the patient only as a container of organs... "the only reason that the ventilator is going still is because of the possibility of organ donation". This strongly sends a message to the family that you don't respect the patient as a person, and it's no surprise that you got the reaction that you did. (Please be mindful that I'm not saying you actually did disrespect the patient, but this is probably what the family perceived.)

So how do you prevent this is in the future? First you have to recognize the need for families to have time to take in and begin to cope with the catastrophic event that has just occurred. Some do this quickly, some take longer. It is possible to explain that there may be time limitations or physiologic limitations for decision making without giving the family an ultimatum. In other words, you need to describe that there are external factors that are limiting, rather than imply that you personally are limiting their options. Certainly at every step in the process it is wise to tell them that the decision is difficult, that it is personal, that you want to respect their need for time to think, and that you will respect their decision as the right one for them. You have to be willing to give them some control in this situation while not losing control of it yourself, and offering them a reasonable period of time to consider their decision is one way to do this.

Next is to set your priorities. If your SICU and your institution value organ procurement highly, then it is worthwhile extending the period of time the brain dead patient is supported because that's the only chance you have of attaining consent from the family. Any other decision eliminates the possibility of procurement.

Thomas Holian:

I was reading all the posts about the case, and all the different viewpoints regarding how to handle the family. What I found interesting was the fact that since every other organ in his body was working reasonably well, he was suffering from some different "classification" of death. That is, since he was "brain" dead, the family is allowed different consideration from other sudden and tragic deaths. For example, a 25 year old gunshot wound to the chest dies from a cardiac injury. He arrives in the ER and is already intubated and ventilated by EMS. He is just as dead as this "brain dead" patient, but who would keep him on the ventilator for a couple days to allow the family to adjust to the loss. Either the patient is dead, or he is not. You can't be partly dead. So if he is, and the family cannot or will not discuss organ donation, seems to me that the corpse should go to the morgue.

Dick Burrows:

The patient is dead - provided the criteria are properly met which I am sure they have. The relatives were allowed the chance to allow some good to come from a sorry situation. they have chosen not to take that chance therefore the only option is firmness and a frank discussion telling them that the dead are no longer treatable and that he will be removed from the ventilator.

To keep the ventilator going overnight if they agree to donate organs is putting them in the wrong situation. It will likely be seen by them as a form of blackmail wherein you are only interested in the kidneys.

The harvesting of organs having been refused leaves the only option of removal of the ventilator allowing the organs to perish as well..

I doubt that giving them any more time to think is going to do anything more than cement the mistrust. Your only protection is to make sure that everything has been done fairly and above board.

Are two examination necessary in a case like this? Or is this a legal requirement? We would simply examine the patient together and, provided the diagnosis is clear, make a diagnosis of brain death.

Louis Brusco:

Sometimes I will try to accomodate such a request, but I have been burned in the past by the family being "delayed". With our closing of ICU beds over the last two years, I usually (as in this case) have 2-3 candidates waiting the bed.

Liver no good secondary to heavy drinking history, elevated LFT's, and coagulopathy on admission. Heart no good secondary to severe LVH on EKG and thick walls on echo. Lungs viable now but likely not in 12 hours as PaO2 starting to decline. Same for kidney function. I don't think the organs would have been viable the next day, and, knowing the OR schedule, waiting until the next morning almost always means waiting for the next evening for harvesting, meaning that it woul in reality be a 24 hour wait (harvesting cases always get last priority in our OR).

I told the family when I first met them (at 9 a.m.) that he was, by evidence, dead, since his brain was dead, and that his heart and lungs were still working becasue we were keeping them working. We would be making a determination at 1 p.m., and would be ready to turn the vent off after 2:30 p.m., whcih was our mutally agreed upon time for them to return.

At 2:30 p.m., I met with the family with our transplant coordinator/couselor. I told them of the brain death protocol result, and that we would be ready to turn off the vent at any time. Just as the counselor brought up the concept of donation, they were letting us know that it was going to take a couple of days for them to "let us" disconnect the vent. At that point I knw I had a problem. It is difficult to explain to the family that the ICU is not a funeral home, that the patient is already dead, and that we can't hold a wake for him here. Hospital rules prohibit a non DNR to go the the floor, and , despite his brain death, if he doesn't have a signed DNR, he can't go to the floor (I am in the process of working this out). I then get the statement that I dread from families in this area - "You are only treating us this way becasue we are hispanic; you wouldn't be doing this if we were white and had insurance."

Despite this, after sessions alone with the counselor, chances for donation are considered slightly less than 50%. But they are still clinging to the belief that they have to "allow" us to disconnect the vent. I then get the other thing that I have dreaded the last few months - the statement that they will go to court "Just like they did for that baby on Long Island" (recall the baby with shaken baby syndrome, brain dead, whose parent went to court to get an injunction against disconnection - the parents lost, but another hosp. accepted the baby in transfer and allowed the vent to continue until the heart stopped, over a week later. Autopsy confirmed Shaken Baby Syndrome and the parents were arrested).

Rolando Berger:

I would move the patient to the floor (on the vent), let the family come in, talk to them, allow them "some time" (up to 48 hrs?) to deal with things, offer counseling if wanted and felt likely to be helpful, and then disconnect life-support with or without their agreement (of course, without any pharmacological support a brain-dead patient is likely to have "cardiac death" on his own rather quickly, anyway).

In my view, the true ethical issue raised in this case is whether keeping a dead patient on the ventilator for any amount of time is ethical... or if one wants to state this as the reverse "null hypothesis", whether in the presence of brain death one must not continue life support at all, thus notifying the family atr once about discontinuation but not asking for permission or consent.

I have no strong feelings either way. From an ethical point of view I firmly believe that both options can be fully justified if operating within well-defined parameters of reasonableness (e.g., the ventilator is not desperately needed for some one else, or disconnection is not done with unnecessary rudness and total disregard for the family's feelings: outrageous professional conduct). However, I do believe that decisions in this arena must be made in a fair and uniform manner, and not on the basis of case-by-case choices made arbitrarily by fearful physicians and spineless lawyers and administrators. I.e., the ethics of each case cannot ever be validly dictated by how powerful, rich, or likely to sue (or shoot the Dr., for that matter) a given family is.

That being said, and all other things being equal, I always favor compassion. That is why I am a Dr., not a prosecuting attorney or a banker. I believe in allowing families a "reasonable" amount of time to cope an deal with the painful reality of a loved-one's death, and to provide help and counseling as needed, but always re-emphasizing in no uncertain terms a clear understanding of two non-negotiable facts: A) the patient IS dead, and B) the life-support WILL BE disconnected in the very immediate future (< 24 or < 48 h??). Throughout all this it must be conveyed to the family by all people involved (in a clearly factual but nonconfrontational fashion) that we are helping them cope, and deciding with them on the optimal timing and logistics of life-support disconnection, but that we are NOT in any way discussing whether to disconnect - that's a given! (see point B above).

Of course, eventually disconnecting life-support without family agreement requires strong and unflinching support from you hospital's administration and legal department to present this as an institutional decision based on unarguable scientific/medical facts, current law, and nationally (internationally?) accepted standards of care. I do not think this type of decision should ever be portrayed as a personal (implying arbitrary opinion, non-factual) decision made by one or two physicians in that particular case.

Finally, I must agree with Dr. Palmer's view: in a case like this one, "negotiating" continuation of life-support on the basis of eventual consent to organ donation is, in my opinion, not close to coercion but, in this context, full unmitigated coercion (emotional blackmail, if you prefer) and as such, always unethical and completely unacceptable in my book.

Because of these latter ethical concern, as well as because it is much "easier" on the families, at our institution it was made a matter of strongly enforced policy that there must be complete (or as near complete as possible) dissociation ("uncoupling" is the correct "in" word) between the task of clinical care and pronouncing death, and the process of securing orgas for transplantation. These two functions are not done by the same people, and the involvement of primary clinicians (nurses and MD) in organ procurement is kept to a bare minimum (near 0 in most cases, actually). Clinical decisions are made, death is declared, and only then is the issue of organ donation approached by our dedicated (and specially trained) organ donation personnel. Our results in securing organs have been excellent: last time I checked (about 2 years ago) we had more than tripled the number of donors since this well structured procurement program with dedicated personnel was instituted, not in small part thanks to the efforts of Dr. Michael Sekela (former head of our lung, heart, and heart-lung transplant program) and Dr. Steve Johnson (former chairman of the U.K. Organ Procurement Committee and now at the University of Arizona in Tucson), among many others that have helped and are helping.

Louis Brusco:

I was not aware that in NY we had to get a neurologist to determine brain death. We need 2 qualified physicians to do exams 6 hours apart; neither HAS to be a neurologist, per our hospital protocol. As Legal Affairs held our recent revision of the policy for 6 years, I'm sure that they would have picked up on this. I must check on this. Anyway, the first physician doing the certifying was the neurosurgeon who operated on the patient.

Ethics Committee not available. Legal tells me to pull the plug, but won't write the recommendation in the chart. I am on the car phone at $.40 per minute with the patient's wife.

Nobody has suggested that I do one thing - offer to keep the vent on as long as the agree to donation NOW. This was suggested to me by an intern. Any thoughts?

R. Alan Meakes:

Attempting to respond to this issue from a Canadian perspective may not result in a satisfactory solution to the US approach, but here goes:

The primary obligation of the physician is to the patient, the duty being discharged upon declaration of patient death. On the patient's death, the "remains", whether warm or cold, belong to the primary next of kin - first spouse, then oldest child, then down to youngest child, then parents. In the case described, the wife has ALL control over the remains. No other person has authority, only influence.

Now that the patient is dead, there is a desire on the part of physicians to use "some" of the remains for medical purposes, be that desire noble or otherwise. What is paramount is that the person with authority (the wife in this case) be persuaded to voluntarily permit such use. For whole organ donation, time is expensive and condition of harvested organs time-sensitive. The challenge is in balancing negotiation with cost/benefit.

The benefit of "exploratory" language prior to the time of brain-death declaration cannot be underestimated. (Example: At the time of admission to ICU - "Your husband has a serious brain injury and may not recover... have you or your husband ever considered the possibility of organ donation under these circumstances?"). No record is given as to preliminary influence in this circumstance.

In the case above, the wife has not come to an understanding of brain dead and furthermore has a serious lack of understanding regarding her role in care or disposal. Therefore, there is no reasonable way of achieving consent quickly.

If there is confrontation without face-to-face resolution of the conflict within a very short time, positions harden and the negotiation is lost. Acquiescence to unreasonable demands does not enhance trust or credibility and is a "lost cause" (Example: if you will keep him 'alive' for 24 hours for family, why not 36, or 48...). However, if there is no physiologic difficulty is delaying till morning, pressure for immediate decision has now reduced your own bargaining position (don't fence yourself in with the tyrany of the urgent).

In this case, I think the cause is lost and I would stop the ventilator and save unnecessary time, cost, energy. You have already advised her of hospital policy, which you now must act on if it's to be upheld. There is no possibility of litigation regarding cessation of medical care to a dead person. Let the letters follow.

Bill Briggs:

"offer to keep the vent on as long as the agree to donation NOW."? IMHO this is a totally unacceptable approach. We should not be involved in "buying" organs either for money or any other consideration. Rather than emotionally blackmailing grieving relatives let's be honest about it and offer them the choice of cold hard cash for their relative's organs. It is ethically the same and may be more effective......but count me out. Given the specific mess that you are in with this case, my $0.02 is to leave the patient ventilated until the other relatives arrive or the heart stops, whichever comes first.

Nancy Wolpert: Taking care of the family in a compassionate manner is also one of our responsibilities. The family is an extension of the patient and is obviously grieving at this time. If the family can be accomodated (i.e. don't need ICU bed) then it should be permitted. Otherwise, transfer the patient to a unit which handles ventilators. Obtaining the organs is besides the point at this time. Agreed upon time limit with the family should be established. In Ohio, there is a law which permits the physician to remove a pt. from the vent if brain dead-but each case is different and should be treated as such.

Hendrik Demey:

Situations like these differe from country to country and from society to society. Let me try to draw the Belgian situation.

  1. By law, we always have the right to harvest organs from a deceased. Only when there is a written statement that the deceased refuses organ donation ("opting out") will organ donation be prohibited. This refusal can be communicated to a centrally located computer ("county registry"); the transplantation coordinator has to check thsi computer before organ donation can proceed.

  2. In current daily practice, we discuss organ donation with next of kin and ask for their permission. We continue to do this (ask permission) even if we don't have to by law (see point 1), because only the last 5-10 years organ donation is a topic that can be discussed with relatives. I remember too well the situation of 10 years ago when broaching the subject of organ donation was considered heresy. Now, this discussion is more easy and accepted by relatives. Sometimes it is even the phamily that opens the discussion.

  3. When talking with the family, I always start by saying that the victim is dead, legally and morally. Only afterwards (let's say after the first tears have passed) will I introduce the topic of organ donation. I always tell them that all machines will be disconnected immediately if organ donation is refused because there is no longer a relative, only a dead corpse hanging on the ventilator. If organ donation is accepted, I tell them that we will continue to ventilate, in order to oxygenate the tissues of a dead corpse.

I believe that a clear definition of what You are talking about is necessary in order to have relatives understand what You are trying to communicate. Never do we accept a treat of legal action. But then, the US situation of legal eagles hovering in the corridors of the hospital (perhaps even lurking under the beds :-)) is unknown , even impossible, in our situation.

Aviel Roy-Shapira:

I wish to thank Alan Meakes for his detailed and well reasoned post. I agree with his recommendation for the course to take now. At first I thought that calling back and agreeing to wait till the am was a reasonable option, but Alan convinced me that it is not. The ventilator should be shut down without delay.

Simon Finfer:

We would handle this by trying very hard not to get to the standoff in the first place.

Presume you painted bleak picture from the start, get rapport from being honest whilst obviously trying very hard on the patient's behalf. When obvious patient is brain dead (7am, has anyone ever had the second set contradict the first if all preconditions met and test done properly? We don't do two sets here) tell family that he is dead. But potential donor and they can have all the time they wish to decide about organs, in your case at least until 14.30 as you're going to do another set. Explain that once brain is dead rest of body will always fail but there is a little time if they think he would have wanted someone to benefit from this catastrophy, encourage them to think about what he would have wanted.

Whilst waiting: Prior to consent being obtained or denied we would support with inotropes, ventilation and any other care short of CPR. If consent given will include CPR in support. Once consent withheld will negotiate reasonable time to disconnect vent having stopped CVS support, and would emphasise the inevitability of cardiac arrest even with full support, emphasise that medical care is prolonging death not prolonging life (semantics, but it seems to help).

If after all that they remain unreasonable despite social work (we have the worlds best social worker, she has to be to work with us) pastoral help, they would likely get a second opinion from another member of the ICU group/neurologist/neurosurgeon whether they wanted it or not. Ultimately the patient would solve the problem for us. Some ethnic groups here find discontinuing care difficult but wilt when told whole brain is dead.

Managing death is an essential part of ICU practice, we do it at Specialist level, our trainees get to observe and see how 6 different people handle it, hopefully they learn. We believe our approach works as the standoffs others describe are incredibly rare here.

Dick Burrows:

Potential legal hassles over this situation don't make sense. Would the executioner hang a man or give him a lethal injection and wait 6 hours just to make sure?

If, as according to Pallis, the diagnosis is certain as with bleeding into the brain substance then one only has to establish the fact that the mid brain is stuffed. The permanent nature of the lesion is already established. You might argue about micrometer recovery but that's really flying in the face of practicality as it certainly ain't going to recover in 6 hours!

The point is that *permanent* loss of mid brain function (and thus death) cannot be established merely by examining mid brain function at two times 6 hrs apart. If that were the case I would have lost my kidneys on a couple of occasions lying in the gutter staring at the stars :-) :-)

Bill Farnham:

The family in Lou Brusco's sad story were indeed thrust into a horrid situation. A long-suffering Dr. Brusco was also in a terrible situation of his own.

A sort of "reading between the lines" speaks poignantly of the astronomical degree to which the public needs education about critical care, organ donation/procurement, and the like *PRIOR* to the time when such education typically must be attempted. All of us who are at the bedside in such times are, in some degree, thrust into the fire, although none into such a hot part of the fire as the attending physician. The patient's family and loved ones do not discriminate (usually) about whom they question as to the "possibility" that Uncle Bud will experience a miraculous recovery from his artifactually flat EEG.

It seems to me that the only thing that can begin to quell the intensity of these hot situations is for everybody who frequents the bedsides of these patients to be very aware of these issues and to be proactive in helping to provide the community with appropriate education *before* the actual need for critical care comes about. Society so desparately needs to have had these discussions, to have an understanding of the fact that "brain dead" = dead, and in general to have made these decisions in times uncomplicated by the stress of being directly involved in a critical care situation.

I could go on, but why preach to the choir? ;-) I s'pose one good thing to come out of this is that folks can read these accounts and be stimulated to some action - any action - at the grass roots level.

Louis Brusco:

SO here is how it ended up. After talking to the family on the car phone only 5 minutes from my house, I turned the car around and drove the 30 miles back to the hospital. I had the family called enroute to let them know that I would be disconnecting the vent in one hour. I got thee, and the family had all left. I disconeccted the vent at the agreed upon time. The temptation to barter his lings and kidneys for a few hours of vent time was quickly dismissed, as it had to be. I could not justify having a wake in the ICU when I needed the bed, and there was nowhere else for the patient to go.

The family comes in the next morning and said that they were shocked that the vent had been disconnected; that they thought that I would not go through with it. They wanted to see the body, whcih was already in the morgue. To make matters worse, our admitting department told them they didn't know where the body was.

I feel bad for families thrust into this situation. They don't know me from a hole in the wall, and here I am telling them that their relative is about to be pronounced dead. Then, here is another stranger telling them that we want his organs. The main reason I bring this case up is becasue of the effect I had feared the Baby case on Long Island would have - here is a family, with the only thing that they know was that another family with a 'brain dead" relative had gone to court and the vent was not disconnected. They think that they can win a court case, and that emboldens them, instead of letting them feel their grief and come to grips with the death of a loved one. They did not know that the family had lost the court case, nor that the baby's heart stopped soon after reaching the new hospital to which it was transferred, nor that the parents of the baby were arrested for the shaken baby syndrome that was found at post. These events were not deemed as newsworthy as when the evil doctors and hospital was trying to kill a baby and hurt their innocent parents.