Altruistic stem cell donation by a person lacking capacity

An NHS Foundation Trust v MC [2020] EWCOP 33

Many may be surprised to discover that the question of whether an incapacitous person should undergo an invasive medical procedure that is of no therapeutic benefit to herself, but which is likely to be of benefit to a third party, has never previously been determined by the Court of Protection. Indeed, it seems the last time any court considered a similar matter was so long ago that one Mr James Munby QC was then instructed as counsel to the Official Solicitor[1].

Nowadays[2], altruistic tissue donation by a live donor is regulated by the Human Tissue Authority (HTA) which holds the statutory responsibility for giving authorisation for the procedure where the donor is a child or an adult who lacks capacity[3]. It is an offence to remove transplantable material from an incapable living person unless the HTA has determined that there is valid consent to the procedure and that no reward has been given[4]. In the case of donation by a child[5] the HTA see no need to bring the matter before a court, as consent to the procedure can be given by a parent[6]. However, in the case of an incapacitous adult, if no one holds an LPA in respect of health and welfare matters or there is no Court Appointed Deputy, that consent can only be given by a judge of the Court of Protection.

It was against that background that the case of An NHS Trust v MC, came before Mr Justice Cohen.

The facts

MC, was 18 and had a learning disability. It was not in issue that she lacked the capacity to make a decision about a proposed peripheral blood stem cell (PBSC) donation to her mother, who had been diagnosed with leukaemia. There was no other suitable donor available and without PBSC her mother’s prospects of survival were very poor.

In addressing MC’s best interests Cohen J noted that the proposed procedure was of no physical benefit to MC herself. To the contrary, it would in fact expose MC to physical risks she would have otherwise avoided. Stem cell donation requires donors to receive four daily injections to ensure that enough stems cells can be harvested, as well as a venous line in both arms for 4-5 hours on the day of the donation. The procedure further carries a risk of bruising, bone pain and cold and flu-like symptoms. It also required a trip to hospital in the midst of the COVID-19 pandemic.

Relevance of property affairs case law

In undertaking the best interests assessment in MC’s case, the court was reminded that the best interest interests test is not to be narrowly construed as a test of ‘self-interests.’ In support of this point, counsel for the Official Solicitor drew the court’s attention to its own case law in the financial and property affairs context. In re G(TJ) Morgan J had noted that “the actual wishes of P, which are altruistic and not in any way, directly or indirectly self-interested, can be a relevant factor” in weighing up best interests[7].

Similarly in Re P [2009][8] Lewison J had said of altruistic donations that “for many people it is in their best interests that they be remembered with affection by their family as having done “the right thing” by their will.”

Those arguments had relevance in the health and welfare context where the court’s assessment of best interests should encompass all the emotional and psychosocial benefits to MC who wanted to help her mother in any way she could, and could include that others would consider MC’s altruistic act of donating her stem cell favourably.

This was not a difficult decision for the judge. MC’s own best interests were inextricably linked to her mother’s survival. All parties agreed that the donation of her stem cells to her mother was overwhelmingly in MC’s best interests: and importantly it was something that MC herself, from her position of limited comprehension, was adamant she wanted to do.

The donation could potentially prolong the life of her mother, with whom she had a close loving relationship. This would bring MC a range of psychological, emotional, social, and financial benefits that were plain to see.

Cohen J concluded that “it is overwhelmingly in MC’s best interest to participate in the proposed programme and donate her stem cells for the benefit of her mother.” He therefore provided the required consent that would then enable the HTA to authorise the proposed procedure.

However, the judgment in MC did not end there.

Wider concerns

Cohen J concluded his judgment addressing concerns of the Official Solicitor about tissue donation authorisation for those who are incompetent or lack capacity.

MC had recently turned aged 18 and was therefore an adult. However, the assessments for the procedure had begun when MC was still a minor, with MC’s father initially providing consent on her behalf. The legislation required that the HTA could only authorise the donation after confirming lawful consent had been given with no financial inducements. It was no part of the HTA’s role as expressed in the legislation to specifically consider the donor’s best interests.  Rather it seemed to be generally assumed that the person giving consent would have already done this.

Understandably, the Official Solicitor had some concerns about the possibility that parental consent alone could have been deemed sufficient to secure to the donation of tissue from an incapacitous 16-17 year old, in circumstances where no detailed best interests assessment had actually been undertaken.

The judge agreed that there appeared to be “something of a vacuum” that had been partially but not completely filled[9]. As the judge noted, the treating Trust considered it held no duty of care to the donor as its obligations were to its patient, the donee. In this case, a second independent NHS Trust had assessed MC’s physical suitability to be a donor. The HTA will appoint an ‘accredited assessor’ to check to see if there is valid consent and no monetary payment or other pressure or coercion applied, but nowhere is there at the centre of what is being considered either by the treating Trust or the Human Tissue Authority, the best interests of the donor.

Cohen J was clear that in his view that “there should really be a considered risk and benefit analysis by the HTA accredited assessor…it could only be beneficial if a considered deliberation of the factors set out within s.4 of the Mental Capacity Act 2005 was performed in each case where the HTA is faced with an issue of capacity of the donor.”

Practical implications of this case

It is not known how many tissue donations the HTA authorise by incompetent children or incapable teenagers (aged over 16). But this case now clearly signals to health professionals and the HTA that authorisation should not simply be a question of checking there is valid consent: an assessment of what is in an incompetent or incapable donor’s best interests should remain paramount.

Whilst the answer in MC’s case was overwhelmingly obvious, one can easily imagine more difficult or borderline cases where making a best interests judgment is crucial. Parliament has enacted legislation in a way that such determinations in so far as they relate to children will usually not require any court application. Nevertheless, Cohen J’s comments on the relevance of the best interests assessment are to be regarded as a welcome safeguard in all cases where issues with the proposed child donor’s competence or capacity have been identified.

As a final aside, this application was heard by video hearing under the Covid-19 protocol with the HTA invited to be in attendance, and was watched by a member of the Press Association and other members of the public (including your blogger). Such transparency in the Court of protection is to be welcomed particularly when issues as potentially significant as live tissue donation are considered.

 

Footnotes

[1] In Re Y (Mental Patient: bone marrow donation) [1997] Fam 110

[2] Under the Human Tissue Act 2005

[3] Under the Human Tissue Act 2004 and the Human Tissue Act (Persons who lack Capacity to Consent and Transplants) Regulations 2006.

[4] Human Tissue Act (Persons who lack Capacity to Consent and Transplants) Regulations 2006. Reg 11(3)

[5] the HTA authorise procedures involving child donors around 60 times a year

[6] or someone with parental responsibility.

[7] [2010] EWHC 3005 (COP) at [54]

[8] EWHC 163 (Ch)

[9] Para [20] of the judgment

 

Bridget Dolan QC was instructed by the Official Solicitor. Katie Gollop QC was instructed by Hill Dickinson LLP for the Trust.