More people can donate tissue than organs – so why do we know so little about it?

Eyes – windows on the soul? Ángelo González, CC BY-SA

Tissue and organ availability for use in transplant operations is influenced by many factors including getting people to register, and the difficult task of discussing donation with those who are recently bereaved. A specific barrier to tissue donation is that so few people are aware of it. There is a lack of knowledge about how it differs from organ donation and also that many more people could donate tissues than organs after their death.

Tissues such as eyes, heart valves, skin, tendons and bone, are needed every day to carry out lifesaving and life-enhancing operations, from treating severe burns to conditions caused by disease and injury. Most people who die in hospitals could potentially contribute to this demand, not just those who become organ donors.

Different donors

A potential organ donor is someone who dies within an intensive care unit or emergency department. These individuals will have been ventilated via a machine as they are unable to breathe for themselves. Patients who die in this situation can donate their thoracic organs (heart and lungs), abdominal organs (kidneys, liver, spleen, bowel, pancreas), and also tissues such as eyes, skin, bone, tendons.

A potential tissue donor would be someone who dies outside of these areas and is not ventilated and therefore organ donation is not an option. For this reason far more people could be tissue donors than can be organ donors.

Barriers to donation

The thought of donating creates concerns for the bereaved about what should or should not be done to a body after death. People might be reluctant to donate the heart of a deceased relative, for example, as for some the heart is seen as a repository of the soul. Likewise the eyes are the least donated tissue because for many they represent the windows to the soul. Eyes are often spoken of as the most meaningful feature of a person and requests for eye donation often stimulate strong reactions from family members who may not realise how life changing donation can be for someone in need of corneal repair and replacement.

Family members who decline donation may view the process as the sacrifice of an intact body to what they perceive to be a disfiguring operation – even though they may be unaware of what actually happens. Eye donation for example, does not result in sunken eye sockets, a common concern; instead, small artificial contact lens-like caps are inserted into the socket with the eye lids closed over them to ensure eyes look as normal as possible.

We can change the status quo

Consent rates for tissue donation are heavily influenced by whether family members are aware of it, have been informed of the potential while at the hospital, are supportive of the idea more generally and know the wishes of the deceased.

These are important factors as, unlike organ donation, the approach and consent to tissue donation is made via a telephone call from Tissue Services, usually once the next of kin has returned home from the hospital rather than via a face-to-face interview in the hospital. Without being previously informed about tissue donation the phone call will be unexpected, and for many, potentially unwelcome at a time of sadness and loss.

In situations where this is the case, consent rates can be as low as 24% of those approached, but when family members are informed about tissue donation the consent rate can be as high as 77% of those approached.

So it is essential that we raise public awareness of tissue donation, the benefits and challenges it brings, and what can be achieved. We need to ensure that healthcare workers are knowledgeable about this end-of-life option and inform family members about it. And we need to ensure that society in general is aware of what people who become tissue donors achieve by contributing to transplant operations and the bio-medical research that develops treatments for acute and chronic illnesses and injuries that impact all of our lives.

When we began our research into tissue donation at Southampton, there was little interest in families’ decisions about tissue donation; the spotlight was fully focused on organ donation. Now we know much more about what people think about tissue donation, their fears, their experiences, and importantly factors that impact on consent rates.

What you can do?

Sign up on the new online donor register where you can indicate that you are willing to donate. You will be offered options which ensures that what you do and do not want to donate is clear, but most importantly, tell your family and friends what your wishes are regarding donation as they will be asked to consent on your behalf. If they know what you wanted they can ensure it happens.

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