Organ and tissue donation: breaking down the barriers

Each year in the UK, around 1,000 people will die while waiting for an organ transplant. Dr Tracy Long-Sutehall, Principal Research Fellow at the University of Southampton, is working with healthcare providers to increase consent rates for organ and tissue donation, so that more lifesaving transplant operations can be carried out.

Southampton’s organ and tissue donation research studies have broken new ground in the UK. The work of our academics has revealed factors that affect the decision-making of family members about organ and tissue donation, and their experiences of the process. This is crucial both to increasing rates of donation, and for effectively supporting families of donors. Despite public awareness and support for donation, there is a critical shortage of organs available for lifesaving transplants.

Today, more than 7,000 people in the UK are on the active waiting list, due to end stage organ failure, and this figure is set to rise year-on-year. Two of the key factors that impact on the number of transplants that can be carried out in the UK are: not effectively identifying potential donors in hospital settings, and family consent rates. Approximately 40 per cent of potential donors’ family members decline organ donation requests.

Only one per cent of the 500,000 people who die in hospital each year will be suitable for organ donation. Usually, these individuals have died from a head injury or a cerebral event, but may also have had a cardiac arrest that has led on to untreatable brain damage. These potential donors are exclusively cared for in intensive care units or emergency departments, due to the need for life support.

Tracy says:

As the pool of potential organ donors is very small, it is crucial that healthcare professionals are equipped and prepared to identify any potential organ donor.

“Figures from the NHS Blood and Transplant service (NHSBT) indicate that identification rates of potential donors have increased over the past five years, with over 90 per cent of potential donors now being referred to the donation service by hospital staff.”

Barriers to organ and tissue donation

Unlike living donation, where a person donates a kidney, liver, or lung lobe while they are still alive, the opportunity to donate other organs and tissues is a time-limited opportunity, that is only possible after death. Death that can facilitate organ donation is often sudden and unexpected, leaving family members in a state of grief and shock. Therefore, the way that families are approached is key to ensuring that they make a decision about organ and tissue donation that is right for them and that won’t be regretted later.

“Our research has indicated that acute bereavement following the untimely death of a family member, spouse or close friend impacts on the consent process for organ and tissue donation. We have referred to this state as ‘disequilibrium’,” explains Tracy. “Although we have a broad understanding of how grief impacts cognitively and emotionally on decision-making in organ and tissue donation, this requires further investigation. What we have found is that this situation requires close attention to the communication styles adopted, and the ways in which often complicated information regarding the death of the potential donor and the steps within the donation process are shared with individuals who are acutely bereaved.”

“Promotional material implies that everyone is positive about donation. However, this is not the case for all families and we must bear their individual needs in mind,” Tracy says. “If you stop someone in the street, they would likely agree that organ and tissue donation is a good idea, but place that person next to the bed of their critically-injured family member who left for work in the morning as usual, sustained for example, a subarachnoid haemorrhage in the afternoon, and is then pronounced brain dead, all potentially within 24 hours, you can see how that might impact on their ability to make a decision about donation.”

Tissue donation

In 2007, Tracy was invited to work with NHSBT Tissue Services as a consultant, to support the development of their family care initiative and review their consent procedures. The work carried out has shown that while organ donation is very much in the public mindset, people are much less aware of the opportunities for tissue donation. Donations such as skin and heart valves can be lifesaving, while many of the other tissues that can be donated, such as eyes, tendons and bone are used in operations that are life-transforming.

The research suggests that this lack of knowledge about the benefits of tissue donation is a factor impacting on family decision-making, as is the associated mental imagery of how their deceased family member may look after tissue donation “The understanding that tissue donation could restore someone’s sight, or save a person from limb amputation is not well-known to the general public or healthcare professionals. Even if someone is having knee surgery using donated cartilage, they may not be told by their surgeon, and this contributes to a lack of awareness. Tracey comments:

During the London bombings in 2005, the Liverpool Tissue Bank came close to running out of skin to use on those suffering from severe burns. Situations such as this remind us that we must use every opportunity to inform and educate both the public, and healthcare colleagues about the need for tissue donation.

Training specialist nurses and healthcare workers

A further issue that impacts on the number of organs and tissues being donated is that some health workers are reluctant to raise the issue of donation with family members, often for fear of causing further distress. Participants in the research have stated that the worst thing that could happen to them has already happened; it can’t be made worse by asking about donation. However, how and when family members are asked, has been shown to be very important and ideally should be carried out by a specialist nurse.

“We know from the evidence that if the person making decisions about organ and tissue donation has easy and early contact with a well-informed, motivated and skilled individual, who is aware of the donation wishes of the deceased (if they have been recorded), that the family feel supported in their decision-making. It is of crucial importance that answers are available related to how their family member, being cared for in emergency departments and intensive care units, will die, what happens during and after organ and tissue donation, and what their role is in this process,” explains Tracy. “It is also essential that family members are provided with a choice regarding organ and tissue donation by the right person, at the right time.”

Going forward

The identification of all potential donors and an approach to their families, will impact on the number of organs and tissues available for use in transplant operations and biomedical research. It will also help reduce the significant costs to the NHS in supporting individuals in end-stage organ failure; costs which reduce substantially after successful transplantation. To achieve a situation where all families are made aware of the opportunity for donation, and that all health workers feel confident to identify potential donors and ask families if they would like to speak to a specialist about donation, all healthcare professionals need to be educated about the potential of organ and tissue donation. Southampton is one of the only universities in the UK where such education is now embedded in various programmes of study.

Tracy comments: “Something that each and every one of us can do to help is to sign up to the organ and tissue donor register, but more importantly, tell our family members, spouses and friends about our wish to be an organ and tissue donor so that they know how we feel about donation. We know that if family members have concrete or discursive knowledge of the deceased’s donation wish, the majority of families will support the wishes of their family member. It is when we don’t know what someone would have wanted that decisions become much more difficult to make.”

Findings from this extensive body of work are now embedded in the National Institute for Care Excellence (NICE) guidance, national clinical practice guidelines, and public awareness initiatives. As such, the organ and tissue donation research of our academics is directly impacting the service provided to over five thousand bereaved family members approached each year.