The Terminally Ill Adults (End of Life) Bill – difficult decisions ahead?
Summary
If passed, the Terminally Ill Adults (End of Life) Bill will apply the principles of the Mental Capacity Act 2005 (the “MCA”) when assessing the ability of certain terminally ill individuals to take the decision to seek assistance in dying.
The Bill frames the matter as an individual’s ability to “make a decision to end their own life”. This implies a holistic assessment, not just a medical decision. The Bill sits uneasily with the existing MCA regime, not least because there is little (if any) law on the capacity required to end one’s life.
Attorneys appointed under lasting powers of attorney (“LPAs”) for both property and finances and health and care should not be directly involved in an individual’s decision to seek assistance in dying. They could, however, be required to provide support with other decisions surrounding it.
The Bill recognises that medical professionals’ involvement in the proposed assisted dying regime must be a matter of individual conscience. Should the Bill become law, an attorney’s fiduciary duties may mean that they are not permitted such a conscientious objection.
Analysis
Clause 3 of the Bill provides that, at each stage of the proposed assisted dying process, the terminally ill person’s decision-making capacity is to be judged in accordance with the MCA.
The Bill envisages that, at every relevant stage, the terminally ill person will need to be free of any cognitive impairment that renders him or her unable to: (i) appreciate the information relevant to the decision to end his or her life, (ii) retain it, (iii) use it or weigh it to reach a decision and (iv) communicate that decision (as per the criteria set out at sections 2 and 3 of the MCA).
Two issues emerge from this proposal:
1. First, what is the “relevant information” for the purposes of the decision to terminate one’s own life? It is either an extremely complicated question or a stark, binary one. Any assessment of capacity to request assistance with dying – required on at least five occasions during the proposed process – will turn on this (as yet undefined) test.
There is little guidance on the point, not least because suicide was treated as a crime until 1961 and the subject remains largely taboo. The case of Re Z [2004] EWHC 2817 (Fam) considers the question of capacity to end one’s own life, but does not set out a clear test.
The MCA implies that any decision to seek assistance in accelerating one’s own death would include an understanding of the reasonably foreseeable consequences of deciding to do so (as required by s3(4) MCA). This could set the bar relatively high.
Any such formulation might come up against a public policy argument in favour of maintaining a lower capacity requirement so that terminally ill individuals are not unduly restricted from accessing a regime intended to alleviate their suffering.
It has been suggested that, unusually, the relevant test could be set out in separate guidance. In the absence of any clear precedent, this seems a sensible step.
2. Clause 2 of the Bill restricts its definition of a terminally ill person to an individual who:
- has an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment; and
- whose death in consequence of that illness, disease or medical condition can reasonably be expected within 6 months
An individual might meet the first limb of the Bill’s test, but not the second (meaning access to assisted dying could be desired, but not yet available); or might have a significant disability or medical condition which, whilst not inevitably progressive, is causing them to wish to end their life.
The MCA involves a regime of supported decision-making. Among other things, it provides that:
- an individual must not be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success (section 1(2) MCA); and
- to the extent that they cannot take a given decision, the decision is to be taken in accordance with their best interests (section 1(4) MCA)
An individual who has received a terminal diagnosis (but is not yet within the 6 month window proposed by the Bill) might wish to use the assisted dying regime in future. If so, they might require his or her attorneys’ support in arranging their affairs to maximise future opportunities to obtain assistance in dying.
This could include support with decisions regarding:
- his or her choice of where to live (e.g. to be close to suitable medical facilities, particularly if his or her physical symptoms are likely to make travel difficult in future)
- understanding the effects of proposed medical treatment (which might interfere with his or her decision-making capacity, and so preclude future access to assistance in dying) and
- the costs involved in funding the above (or, indeed, funding the application itself for assistance in dying itself)
Mental capacity is decision-specific. Depending on the test of capacity adopted, it is possible that an individual might be capable of seeking assistance in dying, but not making other decisions. If so, the decision to seek assistance in dying would be relevant to any best interests decision being made by their attorneys in other areas, meaning the attorneys would need to take the donor’s wishes on this matter into account.
The Bill includes so-called “conscience clauses”, ensuring medical professionals are not obliged to advise on (clause 4) or participate in (clause 23) the assisted dying process. It would, presumably, be open to LPA attorneys to resign their appointment if they were uncomfortable helping to make arrangements that might help facilitate an assisted death.
It is to be hoped that the attorneys would not be criticised for any such resignation. Given that any such resignation could leave a terminally ill person or otherwise incapacitous person without an attorney when one is really needed, would an attorney’s decision to step down be treated as requiring a best interests decision? Should the Bill pass, it would be better for any donor to discuss the matter with prospective attorneys from the outset, to ensure anyone appointed is prepared to provide support in taking such decisions if the need ever arises.
