I never cease to be amazed at people who ask about organ donation when their family member is brain dead. If I were given that terrible news I don't think my first, or even my second or third, thoughts would be about helping someone else. I think that most people could, in time, see that donation is a positive thing, but to get the grim news, "He's not going to make it," and say, "Can he be an organ donor?" astonishes me. Yet that is exactly what my patient's family did today. He was not yet brain dead, but the prognosis was not good. His wife told me, "I am still holding on to that last shred of hope. But if he does become brain dead, I definetely want him to be an organ donor." She felt that it would bring some meaning to this senseless trajedy. He had beautiful eyes, and a good heart, and she wanted them to live on in someone else.
Knowing that the family had initiated discussion of donation, it was still hard to make that first contact. What do you say? When is a good time? It's even harder when the family doesn't expect you. I have to juggle my compassion for the family and when I think they're ready to hear what I have to say, with the needs of the recipients. The sooner we recover after brain death, the better the organ function. Many people think that a brain dead person can stay on that vent indefinetely, but within a few days, depending on the cause of death and their baseline health status, they'll go into multi-organ failure and then cardiac arrest. Brain dead patients can be very unstable.
That is why I have to ask families to make this decision in the middle of their grief. I'd like to wait, let them process it, but there's not much time. As it is, we decouple the approach. Let the hospital staff tell them the patient is brain dead and start the clinical process. Then, I'll meet with the family, assess what they understand so far and see if they know what the person's wishes are; did he have a living will, an organ donor card, etc. You'd be surprised(or not) at how many doctors have said, "He's brain dead. You wanna donate the organs?" It's not nice, it's not compassionate. People need to let it sink in. Especially when their loved one still looks alive:they're warm and pink, their chest still rises and falls. Many times I have to go over what brain death is, and why they won't recover. Some people surprise you, so you can never think, "Oh, they'll never go for it." The least likely people have said yes. Families that were in denial, families mad at the hospital and threatening lawsuits have said yes. Then, sometimes, people I swore would want to donate say no. It's a very personal decision.
Most people want to know if my job is sad. The short answer is yes. It's difficult to put into words why I feel called to do this. When I worked in the ER, I was the one nurse who didn't shy away from grieving families. Sometimes,(not often) you'd have one of those docs who'd tell the family the patient died and then run away and I'd be left consoling them and answering their questions. I guess the only way to describe it is to say that I feel blessed to be around grieving people. I want to help them to navigate their way through those confusing first moments. I don't feel like I'm a particularly consoling person. I'm not very touchy-feely. I don't have a lot of meaningful phrases that I use or anything. Instead, sometimes, I feel like a death-midwife, helping this family transition to the next phase. I couldn't do this if I didn't feel like I was doing good for the families. I know ultimately I'm doing this for the recipients, but when a family makes a decision to donate, it really seems to help them. Like the wife of the above patient, it brings some consolation and a hope that a little piece of them lives on.
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I don't usually take my work home. I used to get very anxious when I worked in a trauma center, worrying about bad things happening to me and my family. Now I'm a little more calm about dying-when your times up, it's up. It has made me appreciate my family and my life more than ever. So while it's always on my mind, I don't usually worry about it. But today was different. I got called back to the hospital tonight and as I was getting ready I was convinced that something was going to happen to me. Maybe it was the talk I had with the wife earlier, now a widow. Maybe it was the blog I read (I can't now remember which one, I know I had a link somewhere) about a woman whose husband died of cancer when their baby was 4 months old. I started thinking about what my family would do if something happened to me. What would I do if something happened to them? How would I go on? Like I said, this stuff doesn't usually hit me, but when it does, it hammers me. Really, I was practically in tears. So I gave Love Monkey and Dear Kid extra hugs and I whispered into Laughing Baby's ear, "I love you." That's all I can do.
7 comments:
I heard recently that here in Nova Scotia, they are considering making organ donation the 'default', so that you would have to elect not to be a donor in the event of your death. Pretty cool idea. Hope it goes through.
I have a personal interest in your line of work, as I donated one of my kidneys to a friend two years ago. Seeing firsthand the difference it can make in a person's life is a pretty awesome thing.
BTW, thanks for the link. I'll return the favour.
Thank you. I think it's amazing that you donated a kidney. I know a doc around here that did the same thing. What a gift. I think Spain and some other European countries do the "default" thing. I think it would be a hard sell in the US but it would save so many lives. I don't know the figures, but I estimate that for every medically suitable, brain dead patient maybe 50-60% of the families give consent. Thanks for reading, I like your and your wife's blogs too.
It *should* be the default down here in the US. Your job is uneviable, but ever so necessary - at least the degree of your angst could be minimized if donation were the default.
We are a medical family who has been the beneficiary of the work of people like you and the surgeons with whom you work. Everytime my mother-in-law gets together with my little girl to laugh and play, the joy comes from the miracle of organ donation and the selflessness of another family who chose for some good to come from their tragedy.
TC, you do blessed and noble work - thank you for your work and thank you for writing about it.
HiTC,
As a person who had received a kidney from a cadaveric donor, I'm truly fascinated by the work that you do. I'm studying nursing in a university and dream of becoming a transplant coordinator like yourself one day. Thanks for your hard work!
tc, I am so happy to have stumbled accross this blog. I too work in transplant(all aspects), and truly feel blessed and chosen for this field. I don't find joy in death and trajic loss of life but feel a need to function as a positive instrument in the process.I find the praise and compliments we get although nice, are short sighted. I find I spend a lot of time deflecting credit and educating on the bigger picture.
As a new Psyc APN at a large urban children's hospital in the US, I attended my first transplant team meeting. I certainly experienced mixed feelings as the cardiologist and nephrologist discussed with the parents their child's poor prognosis. The child had received a heart transplant in the past but now was in CHF and kidney failure. The medications the child had to take had caused tumors and kidney failure, as the cardiologist explained. The child would not live long without another heart and a kidney transplant simutaneously, which has rarely been done. He discussed how the child was not a good candidate for these transplants because of past history. The father argued and wanted ANYTHING to be done to save his child. The mother sat quietly with tears spilling from her eyes. It was finally agreed that they would get a second, maybe even a third opinion. The parents were not ready to hear that their child was going to die. The situation of course is very sad. The doctor talked about the shortage of donated organs and the job they have of choosing who will get those that are available, and that their child was not a good candidate for transplant because of the complications experienced with the first transplant. He talked about quality of life, and putting the patient through the pain of a double transplant when the outcome may be so poor. The cardiology APN asked the parents what would make each day meaningful and special for the child and the parents, trying to emphasize that the time with their child may be short and should be spent doing things the child enjoys as much as possible. But the parents seemed to only focus on getting the child on a transplant list and getting new organs, not acknowledging that she may not get them and die. I don't know yet what the outcome for this child and parents will be. We will continue to work with the parents and the child as they face each new day. psc
That's an aweful position for both parties. I'm also a transplant coordinator. Procurement in the past, now heart/lung. Those conversations can never be neatly resolved. If a retransplantation is performed, it's likely the child will die...along with two other people whose lives would have been saved with those organs. If the transplant team says no to retransplantation, every last bit of hope is taken away from those parents. They came to the hospital and placed all their trust in the team. Even though there was no way this could have been foreseen, I know the tx team members feel an enormous amount of frustration & sadness. We adopt the "you break it, you bought it" philosophy. It's not the ideal choice, but we have the obligation to give our patients a chance with a "good" organ. Uggh..just another day at the office..
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