Organ donation

Consenting to organ donation

In England, Scotland and Northern Ireland, organs and tissue from a potential donor can be used only if that is their wish. Joining the NHS Organ Donor Register is a way of giving legal consent or authorisation for donation to take place. This is a more permanent way of expressing one’s wishes than a donor card as cards can get lost or damaged. People should also discuss their wishes with their family. If their wishes are not clear, the person closest to them in life will be asked what they think they would have wanted. This is why it is important that people are aware of their loved one’s views on organ donation. In Wales (currently also being debated in the Scottish Parliament) there is an ‘opt-out’ system where unless a person opts-out of organ donation, it is assumed that he or she has no objection to becoming an organ donor (1st December 2015). 

The doctors looking after a patient have to make every possible effort to save the patient’s life. That is their first duty. If, despite all their efforts, the patient dies, death is diagnosed by brain stem tests (see ‘At the hospital’). It is around this time that the question of organ donation is raised and the family is given time to come to their decision within medical constraints.
When organ and tissue donation is being considered, a completely different team of donation and transplant specialists are called in. Donor families discussed their views and concerns about organ donation with the specialist nurse (donor coordinator), who was able to explain the process and answer any questions (see ‘The organ donation specialist nurse’).
All of the people we spoke with consented to organ donation on the death of their loved one. This site focuses on the experiences of donor families and does not include interviews with families who chose not to consent.
Some people had been aware of their loved one’s wishes either because they had talked about it, perhaps casually, or because their loved one had carried a donor card.
Catherine’s son, John, had carried a donor card and, in casual conversations with his step-dad, Tom, had spoken about his views. Catherine and Tom carried out John’s wishes to donate but, after consenting, Catherine needed to find John’s donor card to reassure herself.
Kirstie had joined the Organ Donor Register at the age of 15. Her parents were also in favour of it. Although Kirstie’s partner was unsure about consenting to organ donation, Kirstie’s mother, as her next of kin, had the final say.
In most cases, families agree to donation if they know that this was their loved one’s wish. If the family, or those closest to the person who has died, are unsure about their relative’s wish and object to the donation when the person has died, the family’s wish is upheld. This is why it is important for people wishing to donate their organs to let their family or those closest to them know. Haydn had always been in favour of organ donation but wanted his ex-wife to agree to it as well before consenting.
Although some people we talked to had not discussed organ donation with their loved one, or had only talked about it ‘in passing’, they knew their relative would have been in favour of it.
Some people had not discussed organ donation before, especially if the patient had been a young child. Mick and Natalie consented to their son's organs being donated. They had never thought about organ donation before but have now both registered. 
Linda had not known what her husband’s wishes had been when he died suddenly of a brain haemorrhage. She urged other people to discuss their wishes so that they would not be faced with making this difficult decision at a very traumatic time.
Linda and John’s 12-year-old-son was with her throughout this time. Like several other people, she praised the support and information given by nurses, especially in explaining to children what organ donation was (see The organ donation specialist nurse’). Liz said the organ donation specialist nurse helped explain the process to her children and then to her husband, Rick’s, family.
Some people we interviewed had not been asked about the possibility of organ donation by doctors, so they approached them themselves. Ann, whose son Mike had had learning difficulties, said she’d made many decisions on his behalf throughout his life. The whole family agreed with her when it came to consenting to organ donation.
Ann, like other donor families, felt strongly that doctors should ask all suitable families about the possibility of consenting to organ donation.
To help reduce the shortage of donors, new guidance from the UK General Medical Council tells all doctors to ask about the possibility of using someone’s organs after their death.
Andrea, whose brother had had health problems since the age of 11, asked doctors about the possibility of donating organs when he continued to deteriorate in ICU. He’d carried a donor card and had already consented to donating some blood for medical research into his very rare condition. Unlike most patients in intensive care, Paul was conscious of what was happening when he consented to blood being used for research.
Many people we talked to praised the information and support they had from the organ donation specialist nurse and said they were assured they could talk to her as long and as often as they needed. They were also assured that they could change their minds at any point. With the specialist nurse, donor families discussed which organs they would be willing to consent to donating. Sometimes an organ was not suitable for transplantation but could be used to further medical research.
As well as organ donation, donor families are also asked about tissue donation. Tissue donation includes donating corneas, skin, bone, tendons, cartilage and heart valves to help others.
Some families we interviewed were wary of donating their loved one’s corneas because they did not want their face to be altered in any way or because they felt the eyes were important as ‘windows to the soul’. Sandra and Craig did not consent to their daughter, Rachel’s, corneas because that had been her wish. Later, they felt that, had she been old enough to know more about it, she probably would not have minded.
For some donor families, signing the consent forms was the worst part of the process because it had been so time consuming and detailed.
For many people, consenting to organ donation and enabling a patient to have a life-saving or life-enhancing transplant, was ‘a very small positive thing that happened that day out of something that was immensely negative and tragic’. Donor families said they had never regretted their decision and advised other people to talk about organ donation with their loved ones (see Views on organ donation).

​Last reviewed May 2016.
Last updated May 2016.



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