Organ donation and family matters

Hello there - another guest post from @TobyMasonBBC on an issue that exercises many, and will continue to do so over the coming months.

The Welsh Government's just released two documents as part of its consultation on legislation to bring in a soft opt out system of organ donation. Our recent BBC Wales poll found support for this policy running at 63 per cent in favour, with 31 per cent against.

Although we've had a White Paper, details of how the legislation will be drafted are still being finalised before the Bill is brought before the Assembly later this year. Today's release of the full consultation responses and a research report commissioned by the Government give much food for thought for those charged with drawing it up.

In particular, the thorny and emotive issue of whether families will have a veto on whether their relative's organs will be donated after death is going to be one of the crucial points that the government will need to have absolute clarity on when it introduces the Bill - clarity that has to some extent been absent so far.

It's crucial because the nature of that "veto" is, for many people, an important factor in deciding whether they support the policy or not. At present, the family have a veto even if an individual has "opted in" and signed the Organ Donation Register - a fact that surprised many taking part in the recent research study into the issue.

Here's what the government's White Paper says on the new proposed system:

68. The wishes of the deceased are given primacy under the Act (Human Tissue Act 2004), and the Welsh Government will not deviate from this important principle under the new legislation. Indeed the soft opt-out system will provide additional clarity on the individual's views, because objection cannot be recorded within the current system.

It adds:

72. The Welsh Government recognises the importance of the role of the family in a soft opt-out system. The wishes of the deceased will be respected and in order to safeguard these wishes family involvement is essential. We are seeking your views on the role of the family as part of this White Paper.

73. Whilst relatives will still be consulted, the burden of making the decision in the absence of any indication of the deceased person's wishes at such a difficult time will be reduced.

But what exactly does "indication" mean in the context of an opt-out donation system? If the wishes of the deceased have primacy, then in law they are surely only indicated in one way and one way only, that is, whether the individual had signed a form to opt out of allowing their organs to be donated after their death?

If they had not, according to the consultation, then the role of the family is to support that decision, not to express their personal wishes as to whether organs should be removed or not. If a family says the individual "indicated" to them they did not wish their organs to be donated - but didn't sign the opt out register - where does that leave them legally?

The government's own Q+A on the opt out system describes the family's role as an "important safeguard" as "families may be aware of an unregistered objection".

At the same time, the Health Minister is on record as saying she "cannot imagine organs being removed if a family refused permission".

So there seems to be a huge, unresolved issue at the heart of the way this legislation is being currently proposed, which threatens to set up conflict at the most distressing time of a family's life.

The Welsh Government has commissioned Beaufort Research to carry out a qualitative survey of people's attitudes to an opt-out system of organ donation which comes to some striking - and perhaps counterintuitive - conclusions about this very issue.

The researchers found, "Most of the negative comments voiced by participants in relation to the opt-out proposal concerned the role of the family, rather than any specific issue associated with the concept of opting out.

"As with the current system, participants were frequently dismayed to find out that a family member or close relative could object to the deceased's personal choice on organ donation. Some therefore questioned the whole point of expressing a wish on organ donation.

"Some also foresaw complications with the family's influence because of differences in opinion on organ donation."

The researchers added that across the sample, participants had tended not to have discussed their wishes with family members, for a variety of reasons.

But the complicating factor in all this is the Health Minister's statement to the effect that in the last resort, families would wield some sort of veto - but based on what? Their understanding of the wishes of the deceased OR their personal feelings about whether organs should or should not be removed from that individual?

This is picked up on by the Law Society in their response to the consultation. Their reading of the proposals is that the role of the family is to safeguard the wishes of the deceased - but they warn that clarity is essential.

Why does this matter so much? Self evidently, very many people care very deeply about it, and it's an area where any ambiguity could be extremely distressing for all involved.

But also, during the next five year term of the Assembly, this is the most high profile and complex piece of primary legislation to come before it. The government will need to be absolutely sure that it's robust and watertight if the reputation of the institution as a body capable of passing laws for Wales is to be established and maintained.