Tim F. Interview

Tim is a coordinator for a transplant donor network in California. He consults with families at one of the most critical times of their lives - when it is time to decide to donate their loved-one's organs. Here is a glimpse into a job few of us ever see.

Q: Tell me what a typical day is like for you.
Tim: Well my days vary, no two days are the same. Frequently I’m doing a hospital and community education, trying to raise awareness wherever I’m going. When I’m working on a donor a day working with a donor is it’s very much a hurry-up-and-wait type situation. Uh we’re very sensitive to the family’s needs during this time when it’s they have probably have heard the worst news in their life, we have to pretty much cater to what they are going through and what they need. Um with the …
Q: What’s it like when you get the call and you’re in the position of having to deal with the family?
Tim: When we get a call for a potential organ donor the staff has been trained to identify, hospital staff has been trained to identify a potential donor, sorry, as required by the government regulations. Uh when we respond , at the beginning we stay behind the scenes, again we’re very discreet. We evaluate a person for suitability for donation. We’re looking for anything that might rule out a person for organ donation. Uh we don’t want to transplant anything into a recipient that would cause them harm or if a donor is just not , has had too many problems, we wouldn’t accept a donor. Uh the criteria can be fairly strict. In cases where a person is brain dead they can become an organ donor as long as all the other criteria is met, and in that situation we do speak to the family and that time can be fairly complicated trying to coordinate all the staff, again the physicians, the family, making sure all their needs are met. We discuss a lot of other end-of-life issues, not just organ donation. We try to be very supportive because there are so many things going on in their mind. Oftentimes organ donation hasn’t been thought of even, so it’s kind of a sensitive topic to bring up again during this time. There are a lot of myths and concerns around organ donation so we try and discuss all these things.
Q: Could you talk more about that?
Tim: Some myths regarding organ donation. One, is that you’re not caring for my loved one, that you just want the organs. A lot of times that’s even extrapolated into the ambulance, you know paramedics that they see a donor dot they won’t help you because they want your organs. That’s absolutely not true, in fact it would be harmful for the organs for the paramedics or the physicians not to treat, to try and help you survive this incident, trauma, or stroke, whatever it may be. So the belief that carrying a donor dot and identifying yourself as an organ donor you would not get as good of care is not true, because they have to give you as good of care or better to keep the organs viable. Another one is that the rich and famous get organs first. A lot of times I’d say the perception is there because the rich and famous can advertise when they need and then it’s advertised when they receive their organs. So everybody knows it and it’s high profile. When the common person gets an organ it’s almost commonplace right now, because they are done frequently but still there is a huge need. People are listed based on their severity of illness, how long they have been on the waiting list, and then again their blood type and body size. Those are the basic things that are really looked at when you are making a list for organ donation. It does not take into account celebrity status or how much money you make or anything like that.
Q: What do you talk about during those family conferences?
Tim: It’s important I think during a family conference that, again, you’re dealing with this family during a critically bad time in their lives. Something terrible has happened and you need to cater to their needs. We’re talking about organ donation, it’s important to point out the benefits that the donor family receives. I’ve heard statistics as high as 60 percent of people who decline organ donation later on regret that decision. And it’s basically based on that they didn’t have enough information at the time the decision was, um they were being asked to make this decision during a terrible time in their life and they just couldn’t make it. But had they had time and previous information they would have wanted to. So we try and emphasize the good parts of organ donation. We talk about the benefits, how a part of the loved one will continue to live on. That it is a life-saving measure. These types of things we find common that the families that have donated that’s what makes them feel better later on after the dust has settled. In working with families you also have to be, there’s all different types. Some want to joke around about the loved one’s life. We encourage that as well. They sometimes go into stories about when, “Joe’s out here, down here, he would have loved to know he was helping somebody” and that’s very nice to hear those stories as well. Religious aspects come into the picture once-in-a-while but not very often really. People don’t mention their faith a lot, but it comes up once-in-a-while. I enjoy working with the families because I know that I’m providing a service or an opportunity for them, maybe something they didn’t even think about. They’re just surrounded by this tragedy and then I’m coming in and possibly giving them the only good option that they have at this point. And that’s part of what I do, part of my job, working with the families.
Q: What about cultural differences?
Tim: Oh gosh, cultural differences, we do see a very dramatic changes depending on the culture of the person. We find that they Hispanic, Asian, communities typically do not donate. We’re trying to work on that. We also try to provide, when it’s a language barrier or the person is more comfortable in a different language than English, we try and provide a person who will speak that language with them. And you find a lot of the cultural, again I talk about the myths and concerns that come up with organ donation are prevalent in minority populations as well. So there is a lot of education that needs to be done in those areas. I do believe that as far as the waiting list minorities are over-represented as far as the recipient side as they are in the general population.
Q: What do you think that the reasons for those cultural differences or myths are?
Tim: I’ve heard just anecdotally that people, it’s just something that they don’t do. Something that they haven’t thought of. I think it’s pretty much an education issue, especially when you’re coming from Mexico or the Philippines where, although organ donation may not be as commonplace as it is here, I don’t like to use the word commonplace. It’s not done as often I suppose. And in other countries there are problems with buying selling organs, so there’s a lot of mystery and different things involved, I’m not saying that correctly.
Q: Different issues involved.
Tim: Different issues involved, right. So we find that, I need more sleep. What were we talking about though?
Q: We were talking about the cultural reasons for people not wanting to donate.
Tim: The things that come up are that they haven’t thought about it. It’s not something that they do. My wife’s family is Filipino and I hear a lot of stories from them about why they wouldn’t want to donate. You can imagine it’s a hot topic with us since this is what I do, and some of the family members are opposed to it. But primarily it’s something they don’t do. And it’s hard to get past that, that kind of block, or that closed-minded rationale that it’s just not something you do. Again it goes into the education issues, to bring up awareness about what is organ donation. A lot of the fears are not founded. And that if the time was taken and these people could be aware of what’s really involved, then I’m sure that most of them would change their mind.
Q: What kind of information could benefit the medical community?
Tim: As far as the medical industry, education for organ donation, it’s found just like with everything there’s, everyone has their own style, their own way of doing things. But there is a best way to do things to optimize organ donation procedure. This includes things like being able identify, something as simple as that, as a potential organ donor and making the call to the appropriate people. Another one is that who is supposed to actually talk to this family. That’s a big issue and also addressed in government law about who can talk to families. You need to be trained and then you have to kind of go through an internship to talk to families, learn to be sensitive about what’s going on. It is shown that it is best that if someone who is trained talks to the family as well as someone who has built a rapport, a social worker, a nurse, or a doctor, that is actually the best. We need to see more of that collaborative type work to increase organ donation.
Q: Do you ever see patients other than when they are dead or about to die, or do you even see the transplant people afterwards?
Tim: The recipients?
Q: Yes.
Tim: Rarely. I don’t see them. I will know their names, age, basic information when I’m offering out the…
Q: Do you have any personal contact with the recipients?
Tim: I rarely see the recipient side, what happens after the organs leave. There’s a brief of window of time that I am exposed to knowing who the recipient may be when I’m working with the recipient transplant centers. But the end product, or the afterwards with the recipient, has to endure after the transplant, I don’t see that.
Q: Do you have any personal stories that you would be able to tell us?
Tim: One story comes to mind, I know this one unfortunate family. It was the mother of an adult son who had had a stroke, and there was a lot of confusion in the midst of everything. Because she’s on the younger side, and the hospital was very busy and obviously the patient was very sick, and the son was very concerned what was going on. Unfortunately organ donation had been brought up prematurely, which causes a roadblock for us that you know what are we doing, are we trying to get organs or are we trying to save this loved one. Of course everything was done to save her life. Unfortunately her brain died and she did become an organ donor. But because misinformation, this family was told that should they donate organs the funeral would be paid for. This unfortunately was a bit of a roadblock and I had to work with the family because you cannot buy and sell organs. You cannot compensate for any anatomical gift. So you cannot compensate or reimburse for funeral expenses as well. So I had to work with the family on that to try and turn that around. The reason you donate, the primary reason is not so you could have your funeral expenses paid for. It’s to give life so that another person may live on with a part of your loved one.
Q: Would you give us the statistics for donation?
Tim: There are currently close to 80,000 people waiting for different organs, primarily most of those are kidneys. I should probably review this. (Discussion). I have in a presentation I have there’s a dramatic slide that shows after the last decade we’ve had a huge increase in people waiting for organs. I want to say there was maybe 20,000 a decade ago, or in 1988, and we’re over to 80,000 now. Unfortunately in the same period of time there has been relatively no change in cadaveric or brain-dead organ donor. We’ve always been pretty much between 5 and 6 thousand despite best efforts. That’s what prompted a lot of research, a lot of studies, into what is the best practice to meet the needs of these potential organ donor families so that they will donate, so they will recognize the benefits of organ donation, instead of making a snap decision at a very critical time in their lives.
Q: What do you get out of the job?
Tim: What do I get out? I was thinking about this last night actually. I think what I appreciate most about the job is that it’s rewarding in that I’m seeing a person there, and I know there’s nothing that can be done for that person. And whether I’m there or not, it is not going to change the outcome for this person who has passed away. But I know that my actions are directly affecting someone else’s life. That when I sit down and start evaluating each organ, the liver, the heart, lungs, kidneys, that there is a recipient waiting out there who doesn’t know yet that I’m sitting here and within a few hours they are going to get a call that is going to change their life. That’s what I enjoy in my job.