Aviel Roy-Shapira: Dear fellow netters,
This problem surfaced in our unit recently, and led to some heated debates.
A 17 year old girl died after she was suffocated by the crowd at a rock concert. There were 2 other deaths, but this one survived to reach the hospital, and died only two days later. Her parents were approached for organ donation, and the question I ask, is how do you describe the situation to the family.
The two alternatives we argued about are:
Arguments for the former approach were that the message of death is unambiguous, to the latter, is that the family cannot believe a direct statement of death, seeing their beloved all rosy, with a regular heart rate on the monitor. I am interested in your actual practice, as well as in your comments. I shall also tell you about the outcome in this case, which was, because of the circumstances, highly publicized in Israel. Obviously, a humanistic and compassionate approach is essential, and applies equally to both attitudes.
Louis Brusco:
We get our Regional Transplant Program involved from the time a patient presents in a state likely to lead to brain death. A critical care nurse from the RTP stays with the patient to aid in the management, to help preserve organs, to facilitate the brain death determination and to screen the potential donor for the usual things. At the same time, a family counselor from RTP is called. They get involved from the start, talking with the family, building a rapport. This part is where I have a bit of trouble, because the family counselors do not identify that they are from RTP and never mention organ donation. All we tell them is that we think that the patient's brain is dead and that we are going through the process (2 physical exams 12 hr apart, with an EEG in the middle) to determine brain death. After the determination is made, the physician, with the counselor, informs the family that the patient is legally dead, and that there is nothing that can be done.
The counselor will then approach the family about donation, usually telling them that there is nothing that anyone can do for their loved one, but that there are others whos lives can be saved, and some small comfort may be available to them to know that they helped save another's life. The family are usually told that they have a limited time to respond, otherwise the patient will die and the organs will become useless. This allows us to hten tell them that if they don't decide soon (1-2 hours) the we will disconnect the ventilator as the organs will be useless. It forces a decision, and doesn't allow for the older sister to fly in from the Dominican Republic to see the patient before deciding.
Rainer G. Gedeit:
The discussion of brain death, or its possibility should begin with the first interaction with the family. Thereby, they have already heard what it means and how you plan to proceed with its diagnosis. In this way the family can try to understand what is happening. When the diagnosis is made I tell the family that the patient is dead, not brain dead. The previous discussions with them usually allows them to understand that even though the heart is still beating, the patient is dead.
After this the discussions center on the usual question from the family "What happens now?" I then begin discussions about organ donation and autopsy. I only discuss organ donation with the family before death is declared, if the family initiates it. This approach has worked well for me.
David Crippen:
I'm Dr.-------- and I am sorry that we should have to meet under these circumstances. I am also very sorry to have to tell you that your daughter has been involved in an accident at the arena and she is dead. (pause) She was brought to us after the accident and we did everything it was possible to save her but her injuries were too severe and it was not possible. I am truly saddened by this tragedy and I want you to know that we did our best.(pause) (Your daughter) -------- is in the ICU and she is still atttached to the machines we attempted to revive her with. However, that attempt was unsuccessful and now the machines are maintaining her bodily functions but her brain is dead and will not come back to life no matter what we do. We have left -------- on the machines that are maintaining her other organs because I want to ask if you will consider donating those organs to others in great need. If you believe --------- would want to give the gift of life to others, we are in a position to maintain her internal organs until such time as they can be donated. If you do not want to consider this gift, the organs will die with ---------.
I would want you to go to her bedside now and think about what --------- would want. We will all be here to assist you in any way we can.
Bob Hoskins:
I try to take this in stages:(1) since many folks have not heard of brain death, I try early in the admit(once I am suspicious that brain d. is imminent) to begin to introduce the concept and the role of technology in supporting vital organs (2) I then gather the family once we are sure of brain d. and remind them of our earlier discussion and tell them that it has occurred and allow them to grieve-after things have calmed down I then introduce the concept of organ donation and tell them I do not want an immediate decision-doesn't give the appearance of being eager to harvest organs (3) I then talk to them again and also have our organ donation agency staff available to discuss issues and answer questions-I keep this moving along so no long delays occur, but I also feel strongly that my primary responsibility is to support the family and a secondary responsibility is organ procurement(which I strongly support). I do not want a family leaving the hospital with the grief of losing a loved one compounded by the bitterness and anger of thinking we were rushing them into a decision to donate organs-I think we are usually successful-our organ procurement folks are happy with our results and the vast majority of people we hear from are pleased with our approach. We still have the occasional refusal to even discuss the issue and the occasional request to not terminate support(easily solved with more discussion with the whole family and sometimes clergy-the occasional memorable exception does happen!!).
Rahul Aggarwal:
We approach the family very early into the process. As soon as we think that patient is more than likely going to go on to become brain dead we start taking to the parents and explain to them the whole process of brain dead criteria and what happens after that.We also explain to them about organ donation and what will happen if they agree to donate or not.This process involves several meeting and tremendous amount of time.I am the one who does most of this with help of my staff nurses.So far we have hade excellent results with this approach. (By the way, I am alone I have no choice)
Malcolm Fisher:
The semantics of such requests are anb interesting minefield. In Europe they offer training programmes to learn how to do it. The first key is the person who does it should be she who has spoken to the family most and is identifiable to them as a key player in trying to save the girl's life. I then tell them as you suggest that their daughter is legally dead,has irreversible loss of brain function, and the appropriate response is for members of the family to spend some time with her as we cannot articially maintain her other organs indefinitely and propse to withdraw the ventilator. Never "Life support" This confuses relatives and can be seized on by cranks . I then ask if they have ever discussed organ donation and in particular do they know what the patient had recorded on their driver"s licence as to their wishes. This is on every Driver's Licence in OZ and is a big help.. Usually then the want to know what the procedure involves which i explain and then give them some time to discuss it ,explaining that there is no pressure but it may be a way in which some good can come from disaster.
What would she want? If they ask which organs we want i tell them that i know of no way to make the answer sound other than like a shopping list but depending on need eyes,heart,lungs,liver,kidneys,pancreas if they force me into a list. we get over 90% and most refusals are due to expressed wish or religion.
Dick Burrows: .
There are two main problems here as I see it. In the first instance there is the brain death and how you deal with the family. It is a partucular situation where the "Art of Medicine" is particularly important perhaps even more than the science.
I quote Paris & Reardon here (Moral, Ethical and legal issues in the ICU J.Intensive Care Medicine 1991;6:175-195) as they can say it a lot better than me "As William Curran, Professor of Legal Medicine at Harvard Medical School and member of the original Harvard ad hoc committee on brain death hed repeatedly emphasised, the determination of brain death is a technical medical issue, one which does not involve patient consent or family approval. Once the medical staff has made a well-informed determination of brain death, the patient is dead. The only moral issue remaining is the proper disposal of the corpse"
"Not only is there no need to ask family permission to remove the respirator, to do so is highly inappropriate. It is to give a purported moral choice where, in fact, none exists. Furthermore, to do so is to open the family to unnecessary feelings of ambivalence, anxiety and guilt, feelings that may result in moral paralysis or a steadfast denial of death. Those emotions may in turn result in a decision to continue intervention in the hope of a miracle"
The first issue therefore is to make sure I retain control of the situation and To me the important thing is to have the trust of the relatives that I am doing the right thing by their sick relative. They need to be treated firmly and compassionately but they do not need ambivalence. They meet a unified front in the unit and they are offered second opinions etc. If I now say to them "I now want the organs" then I think quite understandably they may think that all I'm really after are the organs. I lose their trust and all hell breaks loose. Therefore the first issue is to make sure that they understand that the individual is dead and that is difficult enough in most instances - especially when you have to cope with various numerous religions and other customs.
As regards the second issue of approaching the relatives for the organs- I do not offer them the option but rather hope that they bring it up and if they do then we can still offer solace and help them understand that what they are doing is right. Occasionally I suss out the idea that they want to donate but haven't said anything for fear of whatever?? Then I will broach the problem. Oftentime they do bring it up or somebody in the family thinks about it - especially when they see the Organ Donor posters in the waiting room...... I realise that this may be regarded as something of a cop out but I really think that this is one area where it is really best to come from their side. In essence I really don't know any easy way to go about this. It is the Art of Medicine.