Raising the prospect of an autopsy donation with the family of a terminally ill child can be a difficult conversation. Click below to read how other experienced clinicians conduct these conversations.
Dr. Sharon Gardner, NYU Langone Medical Center
I try to bring it up as soon as possible after it becomes clear that a child is terminal – generally within days of telling the family that we have no more curative options. I never talk about the possibility of an autopsy during our first conversation about end-of-life issues because it is overwhelming for families to hear that their child is no longer in curative care.
How do you bring up autopsy in a conversation with a family?
Generally, I say, “Your child’s illness is a terrible thing. However, we may be able to perform a tissue autopsy, which could result in something good coming out this. The goal of the autopsy would be to obtain tissue for research that could help prevent other families from having to go through what you are going through.” That is usually enough information for a first conversation.
Are you always the one who discusses autopsy tissue donation with families of your patients?
Yes. I usually try to have a social worker or somebody else there who is supportive but more neutral. Sometimes families will say things to social workers that they won’t say to doctors.
Do patients ever become angry when you talk about autopsy donation?
Honestly, and surprisingly, no one has ever responded angrily to this conversation. Families have said “no” fairly quickly, but they have been emphatic, not angry. Before I started asking families if they wanted to donate autopsy tissue, I had a preconceived notion that families would be very upset, but I’m finding this not to be the case.
Do you usually have a sense of what a family’s response will be?
Yes. But every once in a while I am surprised. If a family is having a difficult time accepting that their child is dying, I won’t ask. Or, if the parents aren’t working well together and the family dynamics are tense, I also won’t ask. You need both parents on board to agree to an autopsy. That said, I recently had a family that was opposed to an autopsy until the very last moments of their child’s life, at which time they changed their minds.
After the initial conversation, do you bring up autopsy donation again?
It depends. If a family does not bring it up, I generally do. However, I have found that families usually raise the issue themselves and are clear about whether they do or do not want to go ahead with the donation. They may also have questions about the procedure.
What kinds of questions do families ask?
Families want to know how the autopsy is done, what a child will look like after the procedure, and if it is possible to have an open casket. They also want to know about other practical issues: who performs the autopsy, where and when does it happen, is it possible to donate tissue if my child dies at home.
Most families don’t ask for details about the research that will be done on the tissue. And they rarely raise the issue of cost, although I believe this is something that they are thinking about. In anticipation of this concern, I proactively discuss costs with families that seem interested in proceeding. I assure them that them that they will not be responsible for any of the costs.
Do you use the word “autopsy” in your discussions with families?
Yes. I try to be as precise as possible with my language. I make sure they understand that the autopsy will be limited to the brain and spine and I am specific about the location of the incisions. This is important to families who want to have an open casket.
After the autopsy, do families ever ask about the results?
We do have families who ask to speak to the pathologist and go over autopsy reports. Our neuropathologist, Dr. David Zagzag, is very open to speaking to families.
Why do you make it a priority to speak with families about tissue donation?
The tissue can be invaluable, and the research techniques becoming available to study it are exploding. We have so many more tools now to study the disease. I feel I owe it to my patients to make this research happen.
Dr. Ute Bartels, The Hospital for Sick Children (Sick Kids)
How and when do you raise the issue of autopsy donation?
It is very dependent on the situation. For families of children with pontine gliomas (DIPGs), I usually raise the issue in a general way early on as part of my explanation of the diagnosis. At this point I tell them that we have a limited ability to understand the biology of DIPGs, because there is a lack of tissue available for study, and that much of the information that we do have comes from banked autopsy tissue. However, I do not specifically address their future decision to donate tissue postmortem because I do not want to rob them of hope. If they are devastated and cannot listen to this information, I may not even bring it up.
When the symptoms progress, I bring up postmortem donation again – often at a meeting during which we review experimental and support strategies. At that time families are more prepared to think about a postmortem tissue donation as an option. Of course, it is always easiest when families bring up postmortem donation themselves. This happens about one-third of the time.
Do you always raise the issue of autopsy tissue donation?
No. About one-quarter of the time, I choose not to discuss postmortem tissue donation with the family, because I believe that it will make them uncomfortable. Of the families I ask, about half consent.
How and when do you follow up with families after this initial conversation?
I follow the family’s lead. If they are interested, I give them more information. I find it important for families to ask for information in their own way. In some cases, I will bring the issue up again, but not too often.
What do you tell families about autopsy donation?
For families whose children have pontine gliomas, I explain that we have a lack of insight into the biology of brain tumors because we do not have much tissue available for biologic studies. I describe tissue donation as an opportunity to move our understanding forward after a child has passed. At this point I let them digest the information. If they are interested they will bring it up again.
What words do you use in this conversation?
I speak as if I am thinking out loud. I ask parents if they have thought about where and how they are going to take care of their child. We discuss end-of-life issues and review what needs to be done. I prefer to have a social worker or nurse present who has insight into the family’s living conditions and financial needs. During this conversation, if the child has a pontine glioma, I usually mention that we haven’t had a chance to look at the tumor, and I tell them that there might be an opportunity to give the tumor to research after the child’s passing.
What questions do the families typically ask?
The most common questions the families ask include: Will there be able to be an open casket? Is there any expense to the families? How soon does the autopsy have to happen? Can we change our mind at any time? Will tissue donation really make a difference?
Dr. Peter Phillips, The Children’s Hospital of Philadelphia
At The Children’s Hospital of Philadelphia we have a well-established approach to end-of-life planning. The starting point is a discussion in which we address a range of issues, including autopsy tissue donation.
Are you the only member of the medical team present during this discussion?
No. At a minimum we include the family’s lead nurse practitioner and social worker.
Does autopsy tissue donation always come up during these discussions?
No. Sometimes we choose not to discuss it. About 15 to 20 percent of families hold out hope of a miracle cure for their child. Any discussion of death-related issues, including autopsy donation, is something they just do not want to hear. We want to respect their feelings.
What do you tell families about autopsy tissue donation?
I explain that it is an opportunity to contribute something that will last beyond their child’s lifetime. I tell them that, as our surgical techniques have improved, the amount of tissue removed during biopsy and surgery has diminished, and therefore not much tissue is available for study. At no time has it been more important for us to have tissue than now. Twenty years ago all we could do was look at the tissue under a microscope and look for DNA targets for treatment. Now we have a universe of different targets that we are trying to understand, and we need donated tissue to study these targets.
What do you tell them about the autopsy process?
Many families are not familiar with the concept of a limited autopsy. I tell them that the goal of the procedure is to extract tissue to be used for research, not to provide them with information on the causes of their child’s death. The autopsy is an acquisition procedure used to obtain as much tissue as possible. The difference between a biopsy and an autopsy is that during an autopsy we remove as much of the tumor as we can. I also let them know that the autopsy will be done in a medical setting that does not dishonor the body in any way.
What questions do families generally raise about autopsy tissue donations?
They ask if they will be able to have an open-casket funeral. The answer is yes. I let our families know that it is not disfiguring. They also ask about logistics and timing issues. Generally these issues can be resolved in a way that is comfortable for the family.
How do you follow up with the family after the tissue donation?
We contact all of our families by phone two and four weeks after death, and then again as needed. If a family has donated tissue, I thank them during this conversation.
Do you provide the family with any autopsy results?
If families are interested, we will share the autopsy findings. We do this in person at a meeting that takes place in a non-clinical setting.
Do you share information on research that is done on the tissue?
Occasionally, I have shared with families that we have been able to obtain cultures or mouse models from the tissue. They do not typically ask for this information. However, families are becoming more empowered, and I would expect that this is a request that will be made more frequently in the future — and we will provide families with whatever information we can.
Do you have any recommendations regarding donation logistics?
Yes. Plan ahead. Notify the pathologist and funeral home as soon as possible, and provide them with as much information as is legally possible on the patient and a rationale for the procedure. They will do a better job if they are fully invested in the process. Obtain consent from families ahead of time.
Dr. Katherine Warren, National Cancer Institute
If a patient has a pontine glioma, I usually bring up tissue donation at the first visit in the context of what is currently known about the diagnosis. I explain to the family that our understanding of the biology of the disease is limited by the lack of available tissue for study, and I tell them that what information we do have comes from tissue obtained at autopsy. For patients with other diagnoses who have failed standard therapy and are coming back for relapse treatment, I discuss autopsy tissue donation in the context of what it can help us learn about the biology of relapsed or metastatic cancer.
Sometimes parents initiate a conversation about autopsy donation on their own. In these cases, parents might approach me directly, or they might initiate a conversation with another member of the medical team with whom them have developed a close relationship. In cases in which another member of the team is the initial contact, I try to include that person in the discussions as we move forward.
I almost never bring up the possibility of a donation for the first time when the child is near death. I have found waiting this long is unlikely to result in a parent consenting.
Do you bring up the possibility of a donation again, after the first conversation?
I plant a seed early on and then allow the family time to process it. Sometimes families bring it up later themselves, or if there is an opening I bring it up again. In most cases, it is a conversation we have on and off over time. The bottom line is that every family is different.
Are there certain words you use when you discuss tissue donation with families?
I use the word “autopsy.” I say it as straightforwardly as I can. I want families to understand that this is the process we use to obtain tissue. I also emphasize the importance of autopsy donations in helping us to better understand brain tumors.
How do families typically react?
When I discuss autopsy tissue donation with families whose children have been newly diagnosed with pontine gliomas, I find they are so shell-shocked that this one piece of information does not jump out at them. When I bring up autopsy tissue donation again when the child is at end of life, I usually know how families feel about it.
Do families sometimes feel like you’re giving up on their child when you ask them to consent to an autopsy?
No. I do not ask for consent until we have discussed other end-of-life issues. At that point, families understand that we have exhausted all curative options. No one I’m working with is surprised to hear the question, “Do you want an autopsy?” When it comes up, it’s an emotional conversation. But I have never had a family get angry. I have never had a family break down because we are talking about the possibility of an autopsy, although they may be crying because treatment isn’t working.
How often do families say “yes”?
Families say “yes” most of the time. However, I do not ask every single family. There is no one reason families say “no.” They may simply not want it. Sometimes their decision is religiously motivated. Sometimes the parents do not agree about whether they should proceed. It is important that they be in agreement.
After a family says “yes,” what happens next?
Children in my practice are usually not local, so we try to facilitate the process with their home doctors as much as possible. We do not want families to incur additional expenses associated with an autopsy. If certain expenses, such as transportation, are not covered, we will pay those expenses.
Sometimes the autopsy is performed at the funeral home and other times it is performed at a local hospital.
Many families that come to me are on Yahoo Groups and know of research being done elsewhere. If tissue is donated to us, we will also comply with their request to send it out to other researchers whom they specify.
Do families ask for results of the autopsies?
Families are interested in the research implications of their child’s donations and they want to know that as a consequence of their decision to donate their child’s tissue, they are contributing to research to find a cure. I send each interested family conclusions of studies to which include their child’s tissue has been submitted.