Human rights must be at the core of proposals for law reform around advance choices and medical decision-making
Deficiencies in Scots law around advance choices and medical decision-making in intensive care situations, put human rights in jeopardy, according to a Law Society of Scotland report.
A Law Society working group of legal experts, medical practitioners and academics authored the report published today, 20 May 2022, to highlight the need for reform and make recommendations for legislative solutions.
This is not a new issue. The Law Society, amongst others has called out legislative shortcomings in this area in the past. The Covid-19 emergency exacerbated and focused attention on existing problems, but both topics have become increasingly important over the years, as the human rights environment has developed and both medical and legal thinking have shifted towards the principles of autonomy and self-determination.
While the Mental Capacity Act has provided a degree of clarity in England and Wales, Scots Law is ambiguous and incomplete by comparison. The result is a lack of certainty for individuals, their families and the medical and other professionals supporting them.
Adrian Ward, convener of the Law Society of Scotland's Mental Health and Disability Sub-Committee, said: “Members of the public have been encouraged to make “advance directives”, but there is no statutory provision for them in Scotland beyond those limited to mental health matters. Nor is the law clear about how to ensure maximum effectiveness of decisions that they might wish to make in advance of incapacity.
“Such decisions can cover a wide range of matters, such as what to do with the house and contents, where they would - and would not - wish to be placed in a care home, what to do with a pet they can no longer look after, and so on – as well as medical matters, but going far beyond medical matters.
“The significant characteristic of ‘advance choices’, as we call them, is that people make their own decision in advance. They do not entrust decisions to someone else and they can cover the situation where there is no-one whom they would wish to make those difficult decisions on their behalf.
“The failure of Scots Law to provide adequate mechanisms and clarity may amount to non-compliance with European and international human rights requirements, and it is imperative that this issue is addressed as a matter of urgency.”
The report identifies, analyses and addresses all of the matters which, it suggests, need to be covered in legislation for advance choices, including offering criteria for situations in which an advance choice should be disapplied, and suggesting provisions to address the tension between offering maximum availability of advance choices and the need for certainty.
The report also offers a basic formulation of the doctor-patient relationship, and resulting obligations, responsibilities and potential liabilities, for application in any situation where medical decision-making cannot proceed sufficiently quickly or at all, in accordance with the consent of the patient.
Jennifer Paton, Law Society Policy Executive and Committee Secretary, said: “The difficulties around advance choices and medical decision making are varied and complex and the working group’s recommendations are comprehensive in their address of the terminology, ethical considerations, legislation, common law and human rights issues.
“It is essential that any proposals for reform align themselves with the developing work of the Scottish Mental Health Law Review, putting human rights front and centre of the discussion.
“This extensive and thorough report does just that and we look forward to engaging with law makers to help bring about change for the benefit of patients, doctors, lawyers and all those who might find themselves affected by these challenging and sometimes distressing circumstances.”
Annex A, Paper on advance directives, Adrian D Ward
Annex B, Paper on advance choices, Adrian D Ward
Annex C, Advance directives and medical decision-making in intensive care situations, Jonathan Brown
Annex D, Advance planning documents discussion paper, Alex Ruck Keene
Annex E, Advance care planning and medical decision making in ICU, Hilary Steele
Annex F, Commentary on draft sections 40 and 41, Alex Ruck Keene and Adrian D Ward
Some of the confusion in this area of law arises from the considerable scope for misunderstanding and misuse of terminology, and the report tackles this issue by providing more accurate and accessible terminology. It recommends that ‘Advance Directives’ are referred to as ‘Advance Choices’, with a broad scope encompassing both instructions given and wishes made regarding health, welfare and other personal matters, economic and financial matters, and any juridical act not expressly excluded by law.
“Instructions given” are intended to be binding, and the report refers to them as “advance instructions”.
Wishes made record the granter’s wishes, with the intention that they be taken into account and normally respected, without being binding. The report refers to them as “advance statements”.
Particular considerations arise in relation to “medical advance choices” and “mental health advance statements”, and these are considered in the report. Medical decision-making in intensive care situations includes decisions about refusing or withdrawing life-sustaining treatment.
Medical advance choices have a potential role in advance care planning and may be relevant in any situation where a need for medical decision-making arises.
Prior to this report, the Law Society addressed these issues in its response to the Scottish Government’s 2018 consultation on Adults with Incapacity reform and in a 2020 letter to the Cabinet Secretary for Health and Sport.
The topics of medical advance choices, and of refusal or withdrawal of life-sustaining treatment, were addressed in Scottish Law Commission’s 1995 Report on Incapable Adults with the relevant sections 40 and 41 of the draft Incapable Adults (Scotland) Bill appended to that Report. That draft Bill subsequently became substantially the Adults with Incapacity (Scotland) Act 2000. Proposed sections 40 and 41 were however omitted, on the basis that the existing law was uncertain and the courts could be expected to develop it. They have not done so.