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Philippa Taylor

Why should families have a say in organ retrieval?

Philippa Taylor is Head of Public Policy at CMF. She has an MA in Bioethics from St Mary’s University College and a background in policy work on bioethics and family issues.


The views expressed do not necessarily reflect those of CMF.

It may come as a bit of a surprise to some people that even if a member of your immediate family carries an organ donor card, or is registered to donate his/her organs on death, you and your family could still refuse to let any organs be removed for donation if he/she were to suddenly die.

Currently, under the UK Human Tissue Act 2004, a family is permitted to veto the removal of organs from someone who had given consent to organ donation, if the family have strong objections to organ retrieval.

This veto is rarely used, at most with 10% of possible donations. Nevertheless, the option is there and when highlighted in the media, it is generally regarded very negatively, mainly because it directly overrides the expressed wishes of the deceased and, with organs in limited supply, it means fewer organs available for use by others.

In Wales, where a new law has introduced presumed consent (see here), there is a legal right to take an organ from any deceased person, unless they have specifically opted out, regardless of the family’s wishes. Although legal guidance is ‘softer’ and removes any obligation for doctors to remove organs, should there be strong opposition, after discussion with the deceased’s family, this is only guidance, there is no legal right for the family to override the presumed consent.

Discussion about the law on organ donation on death is very topical right now.  Labour has just committed to introducing a system of presumed consent in England and Geoffrey Robinson MP has an Organ Donation (Deemed Consent) Bill due its second reading (debate stage) on 23 February 2018.

So why is the family allowed to veto organ removal, and should this veto remain?

There are a number of valid reasons for keeping the family veto. In fact, more than that, for respecting the family veto:

  1. Increased distress. The Bristol and Alder Hey controversies were fuelled by the perception that families had no real power in decision-making with respect to what happened to their loved ones body after death. Similarly, there are occasional situations where continuing with organ removal will increase distress for a family at a tremendously difficult time. The decision about whether to agree to organ removal usually has to be made quickly, and families might well find that they cannot agree to it.
    Many of the situations where organs are most ‘useful’ will arise from cases of sudden death, often in an accident and often of a young person. The family will be going through deep trauma at the time, which needs to be delicately handled. If their wishes not to allow the organs to be removed are then overridden, even if not in accordance with the wish of the deceased, this runs the real risk of increasing the distress families are already feeling.
  2. Treatment of the body. The Bristol and Alder Hey controversies also showed how important the body is to bereaved parents and friends, illustrating the need to respect the human body, even in death.
    It is not simply raw material. Some families feel the body needs to be buried whole (unrelated to religious or cultural reasons) and some families want to stay with the patient after death, which is not always possible with organ retrieval.
  3. Cultural sensitivity. Not all cultures or religious groups are as individualistic and autonomy-driven as our mainstream Western tradition and in many other cultures individuals wishes do not override those of the family. In such situations it may well be culturally insensitive to insist that they do.
  4. Lack of trust. Some people fear that if they became seriously ill, they would receive less thorough treatment if they were donors than if they were non-donors because the hospital wants their organs. This fear – which need not be well founded to have an effect – would increase if the family’s views were known to be overridden. People look to their families to protect them when they cannot protect themselves. Publicly overriding families could make people and their families feel more vulnerable to doctors skimping on their treatment and so more reluctant to donate.
    Moreover, some donors will only consent to donation of certain organs and so will look to their families to ensure that their specific wishes are carried out.
  5. Concern about consent. It will be almost impossible to guarantee that everyone is informed, truly understanding of ‘presumed consent’, knows their options and can easily opt out. Can consent be truly assumed from those who are disorganised, apathetic, disabled, less well educated or informed, isolated, lacking full capacity, of different languages and/or cultures, suffering from (temporary) mental illness, dependent, those who have less ready access to information and those who change their minds?
    The importance of allowing families a veto in such cases is obvious.There may also be evidence that the deceased had changed their mind, or the family might consider that the context of organ retrieval has changed or is different from what the deceased probably anticipated, such as how long a family is able to stay with a deceased’s body after death. If a family wishes to stay with the body after death, that is normally possible in the case of donation after brain death but not in the case of donation after circulatory death because of the need to retrieve organs quickly.
  6. Ownership of the body. After death, questions arise as to who ‘owns’ the body. The assumption about whose body it is begins to move from personal ownership to state ownership. Organs are not the property of the state so unless the state wishes to suggest that the deceased now wholly belongs to it, the family must have some right to become his/her spokesperson.
  7. God designed human beings in His image to be relational (Gen 1:26,27, 2:18-25) and the Bible everywhere assumes the significant role of the family and supportive relationships, in which we belong. Kinship, family identity and family heritage are important biblical themes.

Despite these reasons, most families still follow the expressed wishes of the deceased, deriving hope and some level of comfort from knowing this may allow another person to live. As we have consistently said, CMF is supportive of the gift of organ donation in principle.

However we are not supportive of presuming consent to organ removal when it has not been specifically given, and without the permission of the immediate family. This takes us dangerously close to crossing the fine line between the gift of donation becoming the duty to donate.

 

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