Skip to 0 minutes and 8 seconds JANICE BAYLISS: I’m Janice Bayliss. I’m one of the organ donation specialist nurses. I work for the Midlands team, so we cover quite a big area. And my primary work is to go out to potential organ donors. But we get involved in other work, particularly education around the hospitals we are based in.
Skip to 0 minutes and 25 seconds INTERVIEWER: When is your first point that you introduce a potential donor family, and how do you make that introduction?
Skip to 0 minutes and 31 seconds JANICE BAYLISS: We tend to meet the families as soon as the intensive care units have made that decision, that the patient is neither going to survive the episode that brought them into hospital, or that they look like they’re going to be brain stem dead and the doctors are planning to do brain stem tests. Sometimes that can be the day before or even longer. Sometimes I meet families very early on, particularly if they’re coming in through the emergency department.
Skip to 0 minutes and 52 seconds INTERVIEWER: And how do people initially react to the subject of organ donation and how would you have this conversation with them?
Skip to 0 minutes and 59 seconds JANICE BAYLISS: I’ve said every family’s different that you meet. And increasingly, we have families who’ve already brought up the possibility of organ donation, particularly when they’ve been told just how sick they are and they’re not going to survive. So we go in and we speak to families. We go in with the clinical staff in the intensive care unit who will give the news that they’re not going to come through this. And then we will talk about the options of organ donation. We check the organ donor register. So if somebody is on the organ donor register, that gives us an easy way in to explain what the options are for them.
Skip to 1 minute and 34 seconds We deal with it as part of their end of life care on the intensive care.
Skip to 1 minute and 37 seconds INTERVIEWER: Do families need time to come to a decision, or is there time pressure? And does this change for DCD versus DBD donations?
Skip to 1 minute and 45 seconds JANICE BAYLISS: Families are given a few hours. There are some time pressures. Sometimes we do let them even overnight make that decision, but they have to be aware to a certain extent that the patients will decline and they may not then be suitable for donation. It is different, certainly, for patients who are brain stem dead who are going to be DBD donors. It’s a very clear decision. That patient’s died. And the families respond quite differently then. They often accept that. They know they’ve died. They’ll make their decisions about donation and then they often leave. They often don’t stay with them.
Skip to 2 minutes and 18 seconds For the DCD donors where they know they’re going to have treatment withdrawn, they know that donation isn’t going to definitely be a possibility, they stay with them. Sometimes they need more time to accept that they’re stopping the treatment. So there is a difference.
Skip to 2 minutes and 33 seconds INTERVIEWER: What is the interval typically between identification of the potential donor and when organs may be retrieved?
Skip to 2 minutes and 40 seconds JANICE BAYLISS: It can be done– it’s a process that takes several hours. So we have to obviously have notification, spend some time with them. Even doing the consent for these families can vary between people who just want to say yes, donate everything and to people who need a lot of explanation, a lot of reassurance about what’s going to happen. We then spend time assessing the patient, their past medical history. And that again can be several hours, depending on what’s happened to them, how much past medical history they’ve got. And then we wait to place the organs. So that process typically takes between about 12 and even 24 hours sometimes. So it’s not a quick process.
Skip to 3 minutes and 23 seconds So families do have time to be with them all through that process.
Skip to 3 minutes and 26 seconds INTERVIEWER: Do you think the decision to donate an organ from a loved one helps the family to come to terms with the loss of their relative?
Skip to 3 minutes and 32 seconds JANICE BAYLISS: Oh, why certainly. I think every time you read anything about it, for families who donate, they know something positive’s come out of a very bad situation. So yeah, they do. Most families it’s something that they really like. There are some families who will make that decision and never know or want to know anything about it again. But there are also families, I think, particularly like value letters like Pete, and his team are particularly very good at making sure people write letters. We have a lot of letters from the recipients from the liver team.
Skip to 4 minutes and 0 seconds INTERVIEWER: Do families ever place conditions upon their donation, and what are their motives for doing this?
Skip to 4 minutes and 5 seconds INTERVIEWER: They’re not allowed to place very specific conditions. So they’re not allowed to say who they want the liver to go to or the organs to go to. But some families, even if someone that’s on the organ donor register might say they only want to actually donate specific organs, or they might make a decision that isn’t in keeping with the organ donor register. And in those situations, you support the family to go ahead with donation, whatever the circumstances. Whether it be they don’t want them to donate their eyes or whether they only want them to donate one kidney.
Skip to 4 minutes and 38 seconds INTERVIEWER: Do the donors’ family receive information about what happens to the organs they donate?
Skip to 4 minutes and 42 seconds JANICE BAYLISS: Oh yes, they always– we write a letter. If they want one, we write a letter. A little bit about the sort of age the recipient is, sort of problems they’ve have. And also, we write about two weeks after transplant so they have some information about what’s happened to them and how well they’re doing. I have a lot of these patients, they’re already on their way home by two weeks after their transplants.
Skip to 5 minutes and 2 seconds INTERVIEWER: And do you think the law in England should be changed a to presumed consent situation, similar to that just approved by the Welsh Assembly?
Skip to 5 minutes and 10 seconds JANICE BAYLISS: I think at the moment, we need to see what happens in Wales. I think it isn’t– the fact that the families can still overrule it isn’t going to make it simply that everybody else is going to donate. And the moment when we speak to families and they know somebody’s on the organ donor register, it’s a very positive conversation you’re having with them. So they are– while some do overrule it, it’s quite unusual. It’s about 5% or 10% that overrule it.
Skip to 5 minutes and 36 seconds INTERVIEWER: What are the most challenging and rewarding parts of your job?
Skip to 5 minutes and 41 seconds JANICE BAYLISS: The biggest challenge is making sure that we get to all the potential donors, that every family is offered the opportunity to donate. They’re often an appropriate manner by skilled people such as myself. And that’s really, really important to us, to make sure that every potential donor is turned into a donor wherever possible. And the most rewarding things is actually you see the families afterwards, we speak to them. And actually as we said earlier, that they get a lot of comfort through what we’ve done. And obviously, we work quite closely with the recipient side. So I think we’re very privileged in this hospital that we do have the links with the recipient teams.
Skip to 6 minutes and 17 seconds So seeing their outcomes is very good.
Transplant coordinators – our key to success
In our next two short films we meet a donor (Janice Bayliss) and recipient (Peter Ashcroft) coordinator based in the Liver unit here in Birmingham. These specialist nurses are vital to the process of transplantation.
We begin by meeting Janice to understand the role of the donor coordinators and how they help families face the difficult decision to donate organs. We’ll also revisit the concepts of ‘conditional donations’ and changes to the law to increase numbers of donor organs available. We will also find out what are the most rewarding and challenging aspects of her job.
Janice and Peter are fascinating and compassionate people who are very skilled at their jobs, and are absolutely vital to the success of the organ transplantation programme here in Birmingham. This video raises some interesting issues so please do discuss your thoughts and observations below. For example:
Did you realise that there were separate roles for donor and recipient coordinators?
What are your thoughts about organ donation?
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