Deciding to be a donor
Obviously the issue of being an organ donor only arises when you are gravely ill and death is imminent. It is not possible for you to be involved in the discussions at this stage! It is important to think about this now, so that what happens “then” will be what you would wish for. If organ donation is being considered then two things will be checked: 1. The NHS Organ Donor Register to check if you have registered your wishes 2. Your family / next-of-kin will be asked if they know what your wishes would be. If you wish to be an organ donor please register your wishes in the Organ Donor Register and then discuss this with your family and the people closest to you.
What is the process in being a donor?
Organ donation is never thought about unless every possible medical treatment has been tried in order to save your life. Only once it is clear that there is no chance at all that you will survive, will the staff change the priority for you so your passing will be as comfortable and dignified as possible. Consideration of whether you may be able to become an organ donor will never begin before this. The team that are looking after you are completely different from the transplant team who are looking after the people who need an organ, so your doctors and nurses will always be doing what is the very best for you and your loved ones.
If organ donation may be possible then the staff will check the NHS Organ Donor Register to see if you have indicated that you would like to be a donor, and your relatives (next-of-kin) will be gently asked if it is something that you may have considered, or that they would like to think about. It is clearly a very difficult thing to think about at such an extremely tough and distressing time. If organ donation is something that you have already made a decision about and discussed with your family, so they know what you would like to happen, it makes it much easier for your loved ones. Your organs will never be used for transplantation unless your next-of-kin agrees. It is important therefore to let them know what your wishes would be.
If you have decided that you would like to give the ‘gift of life’ and your family are agreed, some preparations will be made but your care will otherwise be the same and only once you have passed away will the donation proceed.
The donation operation takes place very soon after someone has passed away. There may be a slight delay before this to allow preparation for the procedure, but this will be discussed fully with the family at every stage. The body is not disfigured by this operation, and where desired there can still be an open coffin.
Benefits of being an organ donor
One single organ donor can transform the lives of many people.
One single organ donor can transform the lives of many people. If the heart, lungs, liver, pancreas, kidneys (right and left) and small bowel are all healthy and can be transplanted then seven people can have life saving transplants. Anyone who decides and registers (click here for link to the Organ Donor Register) knows that they will potentially become a life-saver. For the family, experiencing real heart-break because their loved one has died, it can be a source of great comfort to know that the lives of other people have been saved and transformed, that “in their final hours they gave a lifetime”.
Disadvantages of being an organ donor
The patient who will become an organ donor is not disadvantaged as they are looked with just as much care and attention as they would be if they were not an organ donor. Obviously the organs are never removed until after death, when the donor has no further use of them. The body is not disfigured, and is passed into the care of the family after a short delay only.
Am I too old to be a donor?
There is no upper age limit! The overall health of the person is more important than their age and people in their 70s and occasionally even 80s have donated.
If I sign up to the Register will I definitely be a donor?
Many times when someone is very ill their whole system is affected and by the time they pass away it is not possible to use any of their organs for someone else. Only a minority of people who die in hospital are suitable to become donors. The more people that register that they would like to be a donor the better, since many will not be able to donate. Remember that if you have signed up to the Organ Donor Register your family will be consulted so it is important that you chat with them so they understand that you wish to be a donor if it is a possibility.
How do I register my wishes?
Is the law about organ donation going to change?
There are many more people waiting for a life-saving transplant than there are organ donors. Unfortunately patients have to wait for a long time for a suitable transplant, and sometimes they become too ill to receive a transplant or die before one becomes available. While a transplant from a living person is feasible for those with kidney failure and a small number with liver disease, many do not have a suitable living donor and this it is not an option for other organs.
The gap between the numbers in need of a transplant and the number of deceased donors persists despite the efforts of transplant communities, the medical profession and government to increase the number of people who register to become a donor and the proportion of families who will agree to let their loved one donate.
There are different approaches to the issue of consent to use deceased donor organs for transplantation. The ‘opt in’ system places the onus on an individual when alive to explicitly register their desire to be an organ donor. The ‘opt out’ system assumes that all individuals consent to donation and that their organs can be used for transplantation unless they explicitly register their objection to this. This is also termed by some as ‘presumed consent’.
The UK uses an ‘opt in’ system, encouraging people through educational campaigns to register as donors on the online Organ Donor Register. Despite such efforts less than 30% of the population are registered as donors. In practice the agreement of the relatives is always sought. Overall consent to donation is declined by the next of kin in around a third of cases where the transplantation would be an option; if someone has registered their desire to be a donor the refusal rate is lower (approximately 10% v. 50%).
The available international evidence supports the fact that ‘opt out’ legislation is associated with increased rates of deceased organ donation.
There are differing opinions within the medical profession and society at large in regard to the acceptability of an ‘opt out’ system. The perception that this could effectively means acquisition by the state of ‘body parts’ and removal of the altruistic aspect of donation is of concern to some. These and other ethical issues have prevented the global adoption of presumed consent legislation.
However, the higher rate of organ donation in ‘opt out’ jurisdictions persists even when the next-of-kin are still asked for their approval before retrieval. This is termed ‘soft opt out’ and it may be considered that in this system there is not ‘presumed consent’ as the next-of-kin still must agree. So called ‘hard opt out’ is when the relatives are not consulted and their consent is not sought.
Rather than enforcement of a legislative decree, the increase in deceased donation in this setting reflects increased public awareness, societal attitudinal change to donation, and improved infrastructure.
In NI the number of living kidney donors, per million population, is the twice as high as the UK average and is comparable to the highest international live donor rates.
This reflects the generosity of the population here and their positive attitude towards transplantation. The Public Health Agency consultation process in 2013 identified that a proportion of people in NI were not aware of the issues around organ donation (click here for further information), and helpfully developed a public education strategy so many more people could make an informed choice on this issue.
There is currently a proposal in NI suggesting that we should change to a ‘soft opt out’ system. A key element is that the family would always have to agree to the donation, it would still be their decision and the donation would remain a gift freely given. In no instance would a person ‘automatically’ become an organ donor. Click here to read the Health Minister’s consideration of the position in NI in February 2014. The Welsh have decided to change their legislation to the ‘opt-out’ system and this will start in 2015. Click here to read more about this .