Advance decisions to refuse treatment: Where are we now?

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An advance decision to refuse treatment (sometimes known as a living will) is a decision a person can make now to refuse a specific type of treatment at some time in the future.

The Mental Capacity Act was passed late in the last Assembly mandate and received Royal Assent on 9 May 2016. With it, Northern Ireland became the first jurisdiction in the world to fuse mental health and mental capacity law as first recommended by the Bamford Review in its legislative report published in 2007. Under the new law, it will no longer be possible to treat a person who retains capacity (for a particular treatment decision) against their will. This principle will apply to both contemporaneous and advance decisions to refuse treatment, and to treatment decisions regarding both physical and mental conditions.

An image of a doctor and a couple having a discussion (Image: Rhoda Baer)
An image of a doctor and a couple having a discussion (Image: Rhoda Baer, Wikimedia Commons)

The law regarding ADRTs

Across the UK and Ireland the law, in differing ways, allows people to prepare for a future loss of capacity by making advance decisions to refuse treatment (ADRTs). For example, in England and Wales, under the Mental Capacity Act 2005 (upon which the Mental Capacity Act in Northern Ireland was partly modelled), there is provision for adults with capacity to make ADRTs. In Northern Ireland, ADRTs can also be legally binding, but only in common law providing certain criteria are met.

ADRTs are a part of wider advance care planning and a number of the provisions of the Act for Northern Ireland (such as Lasting Powers of Attorney (LPAs), nominated persons, advocacy and second opinions) support good practice in advance care planning.

Many stakeholders, although generally supportive of the Bill at the time, expressed the view that it presented an opportunity to set out ADRTs in primary legislation (‘codify’), rather than leaving the matter to case law. They argued that the advantages of this included:

  • Making the legal status of ADRTs clear so that people have the best chance of making them, and so that healthcare professionals better understand the law and their responsibilities; and
  • Reducing the risk that the recorded will and preference of individuals will be unavailable in crises or emergencies or partially/completely disregarded.

The Department maintained throughout the Bill’s process that to ‘codify’ ADRTs was undesirable, as the case law is evolving. The Act has not put ADRTs in statute, but does provide, what has been termed, statutory recognition for them. It contains a protection from liability (or defence) for an act/treatment done in the ‘best interests’ of a person lacking capacity to make the decision themselves. This ‘defence’ cannot be used if the act conflicts with an ‘effective’ ADRT (meaning an ADRT ‘effective’ in common law). It does not prevent a clinician providing life-sustaining treatment or treatment to prevent a serious deterioration in a patient’s condition, while awaiting a court decision.

Following its scrutiny of the Bill, the Adhoc Joint Committee (Mental Capacity Bill) Report on the Bill shared the view of the majority of consultees that the legal position regarding ADRTs remained uncertain and wanted more clarity. It was concerned with the approach of allowing case law to develop once the law is in place, rather than the policy being set. The Committee, mindful of time constraints, ultimately requested a ‘review and report’ amendment (paragraph 82 of its Report on the Bill). The Department then drafted an amendment, with the then Health Minister, Simon Hamilton, stating that the DHSSPS had,

…no difficulty in agreeing to the Committee’s very reasonable suggestion to look again at this within a set time frame…

However, the Minister maintained, at consideration stage, that the Bill created a unique legal framework outside the common law rules and needed time to ‘bed-in’ before determining rules on ADRTs.

Clause 284 was inserted ensuring that the Department will review the law regarding ADRTs, produce a report (including proposals for a change to the law) and lay a copy before the Assembly. Whilst the main provisions of the Act are unlikely to be commenced in the near future, the review must be undertaken within three years of Royal Assent.

Future policy considerations

If, in the future, advance decisions regarding treatment are to be put in statute in Northern Ireland, a number of policy questions arise. For example, should such advance decisions be:

  • Equally valid in law if oral rather than written?
  • Allowed to be made only by adults?
  • Limited to refusal of specific treatment or also allow requests for specific treatment?
  • Extended beyond treatments to aspects of social care?
  • Able to include any treatments or should there be exemptions?
  • Confined to an already diagnosed condition or extend to future conditions or future circumstances (e.g. pregnancy)?