Dr Sarah Mollart on how St Nicholas Hospice is influencing practice in cornea donation

Categories: Featured and People & Places.

Dr Sarah Mollart is a palliative medicine consultant at St Nicholas Hospice Care and the West Suffolk Hospital in Bury St Edmunds. Three years ago, along with her team she became interested in the problem of the national shortage of cornea donations. Here she tells ehospice how St Nicholas has become a major centre for influencing practice in this field.

Why did you start talking about cornea donation at St Nicholas Hospice Care?

A cornea transplant is a really life-changing operation for people living with corneal disease or injuries: they can go from being registered blind to being able to drive, work, and live life as normal. We do about 4000 cornea transplants a year in the UK but there is a shortage of donated corneas. Corneas have to be bought in from abroad and people stay on the waiting list for transplants.

But why is there a shortage? After all, there is good data from the organ donor register surveys saying the willingness of the UK public to donate is really high. Roughly a third of people are on the register, and in surveys, half the population say they are definitely willing to donate organs or tissues. There is a small proportion of people, maybe 10 per cent, who say “You can have anything except my eyes”, but that would not explain the shortage.

When thinking about who is eligible to donate their corneas, this particular tissue is unique. Corneas do not have a blood supply, so the donor could have had many common types of cancer or various other conditions, with no risk of passing it on to the recipient of the transplant. The tissue does not deteriorate so quickly after death, this means that you can die peacefully and naturally, at home, in a hospice, or a hospital ward, and still donate your corneas. This is completely different to a solid organ donor; they usually need to have died on a ventilator in intensive care, often of an injury. As a result, only a tiny percentage of people who die go on to become a solid organ donor, and it is almost never an option for a typical palliative care patient. But donating their corneas is an option for many of the people we see – as many as 50 per cent.

So, we were wondering, if so many people are willing to donate their corneas, and so many are eligible, why is there a shortage?  We have over half a million deaths every year in the UK: we should have far more corneas donated than we need. There is good evidence that many staff who work with patients at the end of their lives, both in hospices and hospitals, are completely unaware that cornea donation is an option. They can also be very wary of raising the topic.

We thought, “do patients mind being asked this when they are dying?” We know the general public do not mind, as they are used to the question. They are even asked when they are getting a driving licence or Boots Advantage card now.

In order to answer this question, we did a study at St Nicholas Hospice Care, on our inpatient ward. We started telling everybody who was eligible to donate their corneas that the information was there if they wanted it. If they were not interested, we did not put any pressure on them or try to persuade them. We had a six-week pilot period where we gave that information to everybody, and at the same time gave them a questionnaire asking how they felt about having that conversation. We are a small unit, typically around eight inpatients, and we got 11 responses back from 14 surveys. Just over half of people said they were glad to have the information, and the rest did not mind either way. Nobody said they did not like it. Three quarters said that the information was not upsetting, and the remainder said that, while it was a bit upsetting, they would still rather have had the conversation than not.

This was very encouraging. It showed us that our fears about causing distress by discussing cornea donation in those nearing the end of their lives, are largely unfounded. We also found that since we started giving out the information we went from having no donations, ever, to having donations from about 25 – 30 people a year. That is over 50 corneas a year that get donated from our unit, and the national shortage is about 500, so one small hospice is potentially meeting 10 per cent of the national shortage.

Are other places actively asking patients whether they would like to donate their corneas?

Some UK hospices make this part of their routine practice, but they are in the minority. They have certainly increased in the last year or two – I know this because many hospices have been in touch with us, or visited, to see how we do it here at St Nicholas. NHS Blood and Transplant have been very supportive of our efforts, as have Moorfields Eye Hospital, the largest NHS eye hospital in the country. Together, we have formed an alliance for hospice staff who want to promote awareness of the option of cornea donation to patients and families.

How could people who are interested make this change in their own hospices and palliative care teams?

The first step is to understand a few key facts about cornea donation: who cannot donate (mainly it is the very elderly, those with dementia or any other kind of neurological degeneration such as Parkinson’s, MS or MND, and haematological malignancies), and what donation entails (donation of the whole eye within 24 hours of death, a respectful reconstruction that leaves the person’s appearance unchanged, no interference with funeral arrangements). Get in touch with the NHS’s National Referral Centre for Tissue Donation (on 0800 432 0559) to check your centre is close enough to a retrieval team to make donation feasible (this is usually only a problem in remote parts of the UK).

Then you just need to take the plunge and have your first conversation. The amazing thing is how easy it is, provided you are respectful of people’s wishes. It is far easier than many other ‘difficult conversations’ which we have become used to raising. After trying lots of different ways of bringing up the subject, now I just tend to ask people if they are on the Organ Donor Register. Most people who want to donate to help others after they die will have made that decision years ago. Those who are not keen will be able to make this quickly clear to staff.  If they are not keen, I reassure them that there is no pressure, and move the conversation on. There are countless people out there who are more than willing: my approach is to focus on them.

Once someone’s wishes are known, these just need to be documented clearly in their healthcare records. If they are an inpatient, put it on your whiteboards or handover sheets. Put it on the front page of their notes. After they die, all that needs to happen is that someone – and this can be a nurse, a doctor, or even a family member – phones the NHS National Referral Centre (on 0800 432 0559). A specialist nurse will call back, and go through some screening questions with a member of staff, and also the family. They will handle all aspects of the case from this point on, and providing the person really is eligible, and the family consent, they will do everything they can to accommodate the donation.

What is the experience like for the patients and families?

We have had such wonderful, warm feedback from people. Of course, this is not for everyone, but for those who do want to donate, it means a lot to them. Some of my patients have been so proud, knowing that even once they were gone, they were going to help someone else – more than one person, actually. And for family members, it can be a wonderful memory, which helps them in their bereavement. The son of one of our donors said “it is wonderful to think that someone out there is seeing the world through dad’s eyes.” Another person we know donated her husband’s eyes after he died, though he was not aware that it was going to take place, as there was never time to talk to him about it. She said “we will never regret having done this, because we know he would have been chuffed to bits if he had known.”

The main thing that keeps me going through all this work is knowing that all I am doing is removing the barrier that we as healthcare staff present, and letting people make up their own minds on what they want to happen to their eyes after they are gone. The NHS team call it giving the gift of sight – I just want people to have the choice to give that gift.

This week is Organ Donation Week

Leave a Reply

Your email address will not be published. Required fields are marked *