Organ and tissue donation by those with LD: Choice and Ethics

/, Thoughts & Opinions/Organ and tissue donation by those with LD: Choice and Ethics

Organ and tissue donation by those with LD: Choice and Ethics

What are your views on organ and tissue donation with reference to people with learning disabilities agreeing to donate?

Will they understand the concept?  Do they have capacity?

If not, who will make the ‘best interests’ decision and how is a decision arrived at, and who by?

I understand that for many the subject of death and dying is a taboo subject, especially when it concerns our own family members… and for many with learning disabilities organ donation will be a very difficult concept to grasp and would no doubt be extremely upsetting for some.

Yet others may seem to take it in their stride  and may be encouraged to sign a donor card  or agree to become an organ donor simply because they have not become upset by the thought or have ‘appeared’ to understand… but would this be a truly informed decision?  What steps do we need to take to ensure full comprehension and understanding of what has been agreed to?

A parent carer who is uneasy about the subject of organ donation says:

‘I suppose this always has to be a decision based upon the wishes of the person, where possible, and the family. My personal view is that I am absolutely against this for my own family; my wife has a ‘mild’ learning disability but is very gullible and easily led.
There is no doubt that she could be persuaded to do almost anything if the right words were used and she would sign anything if asked nicely. My adult son has little or no mental capacity and woe betide anyone who ever sees him as a convenient source of body parts.
Surely we need to insist on a special set of rules to make sure that vulnerable people are not led astray or abused in this way. I am thinking of writing to Mencap to see if they have a view or any information, the easy read

[1] from the Organ Donation people that I linked yesterday has got me a bit worried.’  Ian Penfold

Is this something we all ought to be discussing with our adult children with learning disabilities?   What about those with no close family to support them?  Who would help, advise, support, educate, and ensure that an informed decision was made?

Who would be in a ‘qualifying relationship’ [2] with those without capacity and who would rank highest, as it is that person who would have the final say to consent or otherwise if no prior directive has been given or if no nominated person has been named or if said nominated person is not contactable. [3]

Unless the subject of organ donation has been broached with the patient prior to the situation of possible organ donation occurring how will anyone know of their wishes?

The government has developed a strategy for organ and tissue donation that aims to increase the number of donated organs, and while not yet developing an opt out system as has recently been agreed by the Welsh Assembly[4], it is something that is being considered for the future.

While the Welsh Assembly legislation states that persons deemed to lack capacity will be exempt from the opt out system it is evident that medical staff are advised to ‘determine that no objection is made’ rather than seeking informed consent and that they use specially trained staff to direct the views of family members in favour of donation.

Where consent has been given by informed consent and through informed choice all is well, but what if as Ian Penfold says, it is given by someone because they are asked nicely, or they are a ‘pleaser’ and will say yes to anything… people with very mild learning difficulties who may not be classed as not having capacity may be subject to the power of subtle persuasion.

What we do need to be wary of is the language used when discerning a ‘lack of objection’  [5] which is what the medical teams are advised to do rather than confirming consent… a subtle but important difference.  The Donor Family Care Document has not been updated since 2005 so we may assume that the information therein still stands.

Consent for organ donation can be written or oral, and may be given by the deceased before his/her death or by a third party, usually a close relative or friend. In the UK, there is no requirement that the ‘appropriate consent’ for removal of organs and their use for transplantation be in writing provided it has been made explicit in some way. Oxford Journals/Medicine/BJA/Volume 108, Issue suppl 1/Pp. i68-i72.

People may have capacity to consent to some interventions but not to others, or may have capacity at some times but not others. Under the Mental Capacity Act, a person must be assumed to have capacity unless it is established that they lack capacity. If there is any doubt, then the healthcare professional should assess the capacity of the patient to take the decision in question. This assessment and the conclusions drawn from it should be recorded in the patient’s notes. Guidance on assessing capacity is given in chapter 4 of the Mental Capacity Act (2005) Code of Practice

Sue Fisher, a parent care says: ‘Difficult to think about but my son doesn’t have the understanding to make the decision so at the moment I guess it would be for me to decide. Having said that I’ve always worked along the lines that we all have the right to choose and wherever possible my son is given that but with limited options so he can cope with it. Maybe after watching something like the hospital dramas on TV with the right content I could talk to him about it – me I’ve carried a donor card for years – my reasoning is that you never know when one of your own might need a donor and having been given a life you should continue that giving in any way you can’

As the government has developed a strategy to improve the number of organ donations it seems to be a suitable time for bringing this subject to the notice of parents / carers.

‘Number of organ donors increases by 50% but relatives should not have the last word…  The practice of organ donation should be changed to ensure that relatives cannot over-ride the wishes of individuals who have elected to become donors before their death…’ the head of a Government taskforce said. [6]

I believe that the best way to ensure that there is no possible conflict is to make certain that the subject of organ donation is included in an end of life care plan [7] with the wishes of the person and their families clearly stated along with the name/s of any nominated representatives and those in first place ranking of qualifying relationships, if known.

Preceding the completion of the plan I would like to think that many conversations giving both sides of the argument and the full facts about organ and tissue donation were to take place with the person with a learning disability, modified and adapted to suit their needs but discussed non -the – less as how else can an informed decision be made and choice to opt in or out be an option?

The last word goes to Ricky Parry, a Learning Disability Nurse:

‘Wow this is a touchy subject, whilst I do not disagree with organ donation I believe that it may be unethical where capacity may be lacking. This is a totally new concept for PLD to comprehend and without a great deal of education before – hand for care givers and other professionals, this subject should remain in the discussion stages.’



Link to easy read organ donation leaflet

[2] Those in a qualifying relationship are found in the HT Act in the following order (highest first)[



[3] The appointment of a nominated representative and its terms and conditions may be made orally or in writing. The HT Act[] sets out the requirements for a valid appointment. The appointment of a nominated representative may be revoked at any time.



[6]‎ New Training tools for organ transplantation  for medical staff

[7] of life care for adults with a learning disability  people with learning disabilities and is based on the Nottinghamshire End of Life Pathway for All Diagnosis.

By | 2017-01-29T20:25:39+00:00 October 17th, 2013|Categories: Health, Thoughts & Opinions|0 Comments