Emma Thirlwall, Transplant Coordinator
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| Transplant Coordinators Emma (on left) and Helen at the Royal Liverpool University Hospital |
Do all transplant coordinators have a medical background?
The majority of transplant coordinators have a nursing background, most have an intensive care background but there are still some with a renal or liver background. My background is paediatric intensive care. It’s just so that we have an understanding of an intensive care environment, because that’s where multi-organ donors are identified.
So, if you are on call, and whilst I know there is no such thing as a typical situation, what could you expect to have to do during a shift?
If I am on call then I am on call for anything to do with multi organ donation in a group of 16 hospitals in this region, and I’m on call for any offers of kidneys or pancreases for patients on the waiting list here in Liverpool, where the organs might be coming from a hospital outside of our region.
So if I am on call and I get called to another hospital within our region where someone has been declared brain stem dead and there is an indication that they may become a donor, I usually start off by taking a little bit of information over the ‘phone about them; things like name, age, cause of death etc and an idea of who I am going to meet in terms of the family. I have to go to that hospital whether or not the donated organs have been allocated to us here in Liverpool for ultimate transplantation.
There are various pieces of equipment that I need to take with me in the car in case organ donation does go ahead. Whatever the time of day or night, it is my responsibility to pack up the kidneys and pancreas and either bring them back here or send them to wherever they need to go for transplantation. I need to take ice, fluid, and kidney boxes (storage boxes). When this is all in the car, I just set off to the hospital where the potential donor and family is and go straight to the intensive care unit where I normally have a chat with the staff or doctor that has called me, before going to meet the family to talk to them about their loved one. The process of getting to know the family can take a couple of hours but it is important that they have all the information they need so that they can then make an informed decision about organ donation; things like which organs they are happy to donate etc. I also ask about the potential donor’s medical history and some sometimes quite intrusive questions about their social history too – because we need to ensure the safety of any organs that might be transplanted.
How has brain stem death been determind, and by whom?
Brain stem death tests are carried out twice and they are carried out by two doctors who sign independently that the patient has fulfilled brain stem death criteria and then these tests are carried out a second time. This is never left to just one doctor. More often than not the doctors within this region will then speak to the family and broach the subject of organ donation. Then they will call us.
How do you establish who, within that family, will act as spokesperson for the whole family?
It could be a huge family with lots of brothers, aunts and uncles; my last donor family was eight siblings and a mum and dad and they were all present during that interview. But when it came to making the decision about organ donation they chose three to represent the family. We make sure everybody gets a chance to express their thoughts and that nobody is ignored.
Is there generally a consensus of opinion?
Very much so. Once they have made the decision to speak to you they have more or less made up their mind that this is what they want to do as a family.
What information you give them to read so that they understand the process, and have real evidence of the immense value of their gift.
The BODY booklet is usually given out and this will be even better when it is updated. And there is general information provided by ‘UK Transplant’ that we give the family to read as well.
What sort of time limit is there from the moment that brain stem death has been determined?
There isn’t one really, but obviously from the moment brain stem death has been established, the body will start to deteriorate and so ideally I would say the quicker we can start the process the better. But I would never ever rush a family. This decision has to be taken one step at a time and whatever reassurances the family need are given, so that their decision is fully informed and they are at peace with what they have decided. My last donor family took five hours to come back to me with their decision which is a very long time, but they had also said that I could carry on doing the assessment, taking blood etc so that when and if they decided to say 'yes' at least no time had been wasted.
Is there a particular place you take the family in order to talk to them in peaceful surroundings?
Most units will have a room or an office where you can go but sometimes they want to talk at the bedside, while we are carrying on with the assessments and making plans to go to theatre.
So once agreement has been given, who accesses the donor register and lets you know where the donated organs will go?
We make the assessment of the donor; things like organ function, past medical history, blood type and virology screening and we wait for the results of that, and once we have a blood group, height, weight, cause of death we register that particular donor with ‘UK Transplant’ so that they can do the kidney allocation. We work closely with 2 zonal teams: one from cardio-thoracic (heart and lungs) and one for liver and we give this information to the coordinators in each of those hospitals, and they will match the information to a patient on their lists. If they don’t have a match then on their own list then we offer to the next centre. We get a list of the centres from ‘UK Transplant’ in a certain order.
The kidneys are allocated through ‘UK Transplant’ but the pancreas will always be matched against our own list first, and if we match up a pancreas and kidney with one of our patients on the waiting list then we have priority over that kidney too.
What determines a good match between donated organs and a potential recipient?
Height, weight, blood group compatibility are certainly essential for heart, lung and liver transplant patients. With kidneys and with the pancreas it’s blood group compatibility, and tissue type.
Do you physically come away with the donated organs and all the necessary paperwork?
Not always. We always come away with the signed consent forms and the donor assessment forms and then we fill in paperwork in theatre relating to each of the donated organs. It might be that the donated pancreas is not suitable for anyone on our list and both kidneys are allocated out of this region so we would just come away with the paperwork. It just depends on the situation. If we do have a match on our list for the donated pancreas (and if this is a kidney/pancreas transplant then we automatically have the donated kidney too) then I will come away with these organs in my car.
At what point do the donated organs become, in the minds of the donor’s family, something that is separate from their loved one?
We try to depersonalize them throughout the whole process so that they can still grieve for their loved one and at the same time come to terms with them becoming an organ donor. It feels quite natural to perhaps start off talking about John’s liver or Paul’s heart but then move on to talk about ‘the heart’ and ‘the liver’. It’s easier for everyone then.
So, a hypothetical situation; say you bring back here to this hospital a pancreas and kidney, what is the process from the point of your arrival on the unit?
I will look at our list with the consultant, and work out who is best matched and who the consultant feels should receive the transplant out of those possible matches. He will say ‘bring in so and so, and bring in so and so’, so that there is a back-up patient. When that decision has been made I will inform UK Transplant and tell them we are keeping the pancreas (or pancreas and kidney). Of course sometimes we get organs from another region and so the process from this point is the same. We call the patients in – telling one of them that they are the back up patient and that they may not receive their transplant if the first patient’s tests are all ok.
We work-up both patients for a transplant: they will both have an ECG, blood tests, assessment by the anaesthetists and by the surgeons, and also if they are on dialysis, then we arrange for them to dialyse on the ward.
The organs will wait on the ward until it is time for them to go to the theatre where we all hope that a successful transplant will take place.
And after the transplant?
We always write to the donor family at around the week post donation point and give them a little information of how their donation was used ‘we were able to do four transplants etc ‘and then make an offer of a donor family visit. Every case is individual and so we are guided by their needs really. If they don’t want a visit then we are more than happy to put this information in a letter to them. But they always leave knowing that they can contact us at any time; whether this is after a week, a month, a year or ten years.
We also give the recipient a leaflet explaining the process of how to write a letter to the donor family and that we will handle any initial correspondence on their behalf. There are no rules as such but most people just want to say thank you.....
Page created: 18 November 2006
Last updated: 18 April 2007
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