The rocky road to reforming assisted decision-making

By Kieran Feely - 15th Nov 2022 | 235 views

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The Assisted Decision-Making Act is to come into effect following warnings about the lack of deprivation of liberty safeguards. Kieran Feely reports.

The former HSE CEO Mr Paul Reid wrote to Secretary General of the Department of Health Mr Robert Watt highlighting concerns relating to the absence of deprivation of liberty safeguards in the Assisted Decision-Making (Capacity) Act 2015 (ADMA). 

This was disclosed in minutes of the HSE board meeting held on 27 April 2022. The minutes stated that the HSE was concerned there was a lack of a clear legislative basis governing restraints on liberty of persons lacking capacity or persons with complex needs. 

This followed HSE criticism of the ADMA and the Assisted Decision-Making (Capacity) (Amendment) Bill 2022 in its submission to the joint Oireachtas committee on children, equality, disability, integration, and youth (JOC) during pre-legislative scrutiny of the Bill in February this year. 

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Mr Paul Reid

In its submission, the HSE stated that the failure to provide for review mechanisms and rights to legal representation in relation to deprivation of liberty would be in breach of the Constitution and the European Convention on Human Rights. The HSE also said that the fact that a person might be deprived of their liberty under the enduring powers of attorney provisions were “unacceptable and indefensible”. 

This level of criticism of Government policy by a public body is unusual and indicates an acute level of unease on the part of the HSE in relation to the ADMA. 

The Bar of Ireland, the representative body for barristers, told the Oireachtas committee that the absence of deprivation of liberty safeguards in the ADMA placed vulnerable people at significant risk of harm. 

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Minister Roderic O’Gorman

Minister for Children, Equality, Disability, Integration and Youth Roderic O’Gorman told the Seanad on 15 September that the 2015 Act needed to be amended. The Minister was speaking at the second stage of the Assisted Decision-Making (Capacity) (Amendment) Bill 2022. 

“The Bill will, first and foremost, enable us to commence the 2015 Act. The need for amending legislation became clear over the course of intensive interdepartmental work that had been underway to prepare for the full operationalisation of the Act and the decision support service (DSS),” said Minister O’Gorman. 

The ADMA was scheduled to come into full operation in June 2022, but was delayed. A revised date for the Act coming into operation was set for 21 November 2022. A spokesperson for the Minister told the Medical Independent (MI) that it has been delayed again because the 2022 Bill has not been passed into law. 

“A new date is currently being sought and will be released as soon as it is available,” said the spokesperson. 

Deprivation of liberty safeguards 

Deprivation of liberty safeguards (DOLS) relate to the procedures by which a person may be deprived of their liberty. According to a press summary from the Supreme Court of the United Kingdom in the so-called ‘Cheshire Case’, their purpose is to secure independent professional assessment of (a) whether a person lacks the capacity to make their own decision about whether to be accommodated in a hospital or care home, or for medical treatment, and (b) whether it is in their interests to be detained. 

The press summary goes on to state that the key feature of deprivation of liberty is whether a person is under continuous supervision and control and is not free to leave. 

Assisted Decision-Making (Capacity) Act 2015 

The ADMA was passed by the Oireachtas and signed into law in late 2015. The main object of the Act is to abolish the wards of court system and replace it with a tiered system of assisted decision-making support for people whose capacity may be diminished. 

The Act provides that all persons are presumed to have capacity and equal recognition under the law. A three-tier decision-making system was introduced. 

Decision-making assistance is designed for people who need support with sourcing and interpreting information. A co-decision-making option is available for those who wish to make a joint decision with a family member or friend. Where serious capacity issues exist, the courts can appoint a decision-making representative to make decisions on a person’s behalf. 

Advance healthcare directives are also provided for, whereby a person can decide in advance what medical treatments they wish to have in future in the event that they have lost capacity to make such decisions at the relevant time. 

The existing position in Ireland 

Persons who lack capacity may be deprived of their liberty and/or have medical treatment decided by others under the wards of court procedure or under the Mental Health Acts. 

The Law Reform Commission (LRC), in its report titled Vulnerable Adults and the Law (2006), stated the legal effect of a person being made a ward of court is that the court is vested with jurisdiction over all matters relating to their person and estate. 

Criticism of the wardship system 

In compiling its report in 2006, the LRC found that the wardship system was unsatisfactory on numerous grounds. 

The Commission found that the system was archaic and complex; the paternalistic concepts were at odds with social and human rights models, which emphasise ability over disability and the concept of capacity in functional terms; there are inadequate procedural safeguards to protect human rights; the focus is on the protection of assets; and proceedings are inquisitorial rather than adversarial where evidence presented is not challenged. 

This means that the person who is the subject of a wardship application does not have the opportunity to cross examine those who give evidence to the court, including expert medical witnesses, according to the report. 

The LRC identified groups of people affected by capacity issues. These include persons with an intellectual disability, dementia, mental illness, or an acquired brain injury. The Commission went on to state that affected persons do not necessarily lack all capacity to decide how to live their lives, but that the wardship system represents an ‘all-or-nothing’ approach. The system changes a person’s status from a person with capacity to a person without capacity and takes no account of the variations in capacity that exist among vulnerable groups. 

These criticisms were echoed in a judgment of the Supreme Court (AC v Cork University Hospital) given in 2019. The court stated that the “paternalistic” approach and its association with the making of decisions by others in the best interests of a person with impaired capacity, is increasingly under interrogation as failing to afford sufficient importance to the right of individuals to make their own decisions. 

The Supreme Court stated that the healthcare system operated on the principles of voluntarism and duty of care and went on the discuss the doctrine of necessity. 

The doctrine of necessity applies where there is a need to act, but it is not possible to communicate with the assisted person, and the action to be taken is such that a reasonable person would take in the best interests of the assisted person in the circumstances. 

However, since it is in the nature of the doctrine of neces

sity that it is designed only to deal with urgent situations, it lacks formal safeguards and procedures, and it cannot be relied upon for more than a temporary justification of such detention, the court said 

Supreme Court case 

The Supreme Court judgment dealt with a wide range of issues relating to deprivation of liberty and consent to medical treatment. 

AC was an older woman who was admitted to Cork University Hospital (CUH) for medical treatment in 2016. AC was treated for her injury and was deemed fit for discharge, but was prevented from leaving CUH on two occasions in 2016. After her treatment, members of her family wanted to remove AC from the hospital, but members of staff were concerned that adequate arrangements had not been made for her care, post-discharge, and the hospital prevented her from leaving. 

There followed lengthy, complex legal actions, which resulted in AC being made a ward of court on the application of CUH and eventually being accommodated permanently in a nursing home. 

The Supreme Court identified two questions to be addressed in the treatment of AC. These were whether AC was deprived of her liberty and, if she was, whether it was in accordance with law. 

The court concluded, in relation to the first question, that the measures taken by CUH involved restraint and she was kept in hospital for an indefinite period under the control of those caring for her. 

It considered whether this finding was altered if AC did not have capacity. The court stated that the Constitutional right to liberty protects people with a mental impairment in the same manner as everyone else and that deprivation of liberty must in all cases be in accordance with law. The court went on to state that if benevolent intentions meant that there was no deprivation of liberty, and therefore no grounds for inquiry into the legality of deprivation of liberty, there would be no legal basis upon which the courts could ask whether the measures taken were justified and were in fact in the individual’s best interests. This would leave vulnerable people without legal protection against arbitrary or unnecessary detention. The persons or institution that takes charge of them would thereby appoint themselves as a substitute decision-maker without legal process. It concluded that neither the European Convention on Human Rights nor the Constitution permit this. 

The court said that it must be clearly understood that the hospital has no overriding legal right to appoint itself as a substitute decision-maker for the patient, no legal power to decide how the right to liberty is to be balanced against the other rights and general welfare of the patient, and no general power to detain. It does, however, have the legal power to take such measures as can be justified under the doctrine of necessity. 

Public consultation on deprivation of liberty 

The need for legislative clarity on deprivation of liberty safeguards for people with capacity issues had been recognised with the publication of a consultation paper and draft Heads of a Bill by the Department of Health in 2017. 

The consultation paper stated that deprivation of liberty safeguards were needed to meet the obligations of the United Nations Convention on the Rights of Persons with Disabilities. Ireland ratified the Convention in 2018. 

According to the consultation paper, the central issue to be addressed is that existing legislation, including the ADMA, does not provide a procedure for admitting persons without capacity to relevant facilities and does not provide procedural safeguards to ensure that such persons are not unlawfully deprived of their liberty. 

A report on the public consultation was published by the Department of Health in 2019. 

The proposals in the consultation were intended to apply to residential centres for persons with disabilities, nursing homes, and some mental health facilities. 

The case of AC v CUH raises questions about the position of persons who lack capacity who may be detained in hospitals, along with consent to medical treatment. 

A spokesperson for the Minister for Health told MI that work on legislation for deprivation of liberty safeguards was paused in 2020 due to the Covid-19 pandemic. 

“This work resumed during 2022 and the development of policy and legislative proposals is under active consideration,” said the spokesperson. 

Pre-legislative scrutiny of the 2022 Bill 

Pre-legislative scrutiny of the Assisted Decision-Making (Capacity) (Amendment) Bill 2022 by the JOC took place during the first quarter of 2022. The report of the committee was finalised on 5 April 2022. 

The HSE assisted decision-making implementation steering group, with support from the HSE national office for human rights and equality, made the submission to the JOC on behalf of the Executive. 

The submission stated that the absence of a statutory scheme on deprivation of liberty is a significant concern. 

“In the absence of such a scheme we are very concerned that the provisions of s.38(2) will become a de-facto scheme on deprivation of liberty without the appropriate legal safeguards and protection mechanisms. We are concerned that there is a potential for use of s.38(2) to authorise – and, for many people currently in residential care facilities, to regularise – deprivation of liberty of individuals,” said the HSE. 

The submission goes on to say that section 38(2) allows a court to make an order “making the decision or decisions concerned on behalf of the relevant person where it is satisfied that the matter is urgent or that it is otherwise expedient for it to do so”. 

“As we understand it, it is possible that this authority may be used to authorise the deprivation of liberty of individuals in the same way as the wardship jurisdiction is currently used to authorise the deprivation of liberty by order of the court,” said the HSE. 

The HSE also expressed concerns relating to enduring powers of attorney. Section 59 of the 2015 Act allows for the appointment by a person of an attorney on whom they confer authority in relation to the “personal welfare” of the person. Personal welfare is defined in the 2015 Act as including whether or not the person should live in a designated centre. A designated centre means a residential facility for persons with disabilities and other dependent persons and nursing homes. 

“This is particularly troubling,” said the HSE, as it could result in a deprivation of liberty contrary to the wishes of the person. The Executive said there is a lack of oversight and the enduring power of attorney may take effect by simply notifying the Director of the DSS. 

The HSE said that the fact that a person might be deprived of their liberty, despite there not necessarily being any contention or evidence that they lack capacity to make a specific decision regarding where they live, is “unacceptable and indefensible”. 

The Bar of Ireland submission was also highly critical of the legislation. It said the abolition of the wardship procedure on commencement of the ADMA in the absence of DOLS created a legislative gap. 

There are currently many persons with disabilities living in nursing homes, other residential facilities, and houses in the community who are subject to some form of deprivation of liberty. At present, the only way these arrangements can be lawfully authorised, reviewed, and scrutinised is through the wardship procedure. 

In its submission, the Bar of Ireland said that when the sections of the ADMA dealing with deprivation of liberty are brought into operation, this will remove the legal basis for regulating restrictions on liberty of a large cohort of people. 

The Bar of Ireland said it is concerned that this will bring about a legal vacuum where extremely vulnerable people will either be unlawfully deprived of their liberty or released from detention orders, which are a necessary element of their care and treatment. 

The Bar of Ireland maintained that the absence of DOLS will place that cohort of people at significant risk of harm. 

The Bar of Ireland pointed out that the Supreme Court and the European Court of Human Rights have made it clear that, in the absence of safeguards, many of the living arrangements for persons with disabilities who are detained or have restrictions placed on them are not lawful. 

Government response 

MI put these criticisms to Minister O’Gorman and sought his response. 

A spokesperson for the Executive told MI that in relation to the concerns of the HSE in respect of section 38(2) of the 2015 Act, and to clarify the proper vehicle for applications to the courts where detention may be linked to treatment or care, the Minister moved an amendment to the 2022 Bill at report stage in the Dáil. 

The amendment adds a new subsection (5) to section 4 stating that “nothing in this Act shall affect the inherent jurisdiction of the High Court to make orders for the care, treatment or detention of persons who lack capacity”. 

“This was introduced to the Bill to ensure that the High Court, which has competence with regard to the protection and vindication of constitutional rights, would consider any need for detention linked to care or treatment,” said the spokesperson. 

[The concerns that related to the jurisdiction of the High Court were raised by the Bar of Ireland. The HSE did not raise any concerns about the jurisdiction of the High Court]. 

In relation to the criticisms by the Bar of Ireland, the Minister’s spokesperson told MI that he moved additional amendments to the Bill to strengthen the provisions regarding the review of detention arrangements in part 10 (sections 104-108) of the 2015 Act. The amendments add new subsections (3A) to sections 107 and 108 and provide for additional applications by a ward’s committee or legal representative where the ward is detained. 

In the absence of such a scheme we are very concerned that the provisions of s.38(2) will become a de-facto scheme on deprivation of liberty without the appropriate legal safeguards… 

Speaking during committee stage in the Seanad on 6 October 2022, Minister O’Gorman said that the amendments ensure that appropriate detention review periods are in place. 

“This increased frequency of review proceedings will further protect the rights of relevant persons and bring provisions in line with those of the Mental Health Act 2001,” said the Minister. 

The section of the 2015 Act complained of by the Bar of Ireland, section 108(2), has not been amended. 

The HSE and the Bar of Ireland were asked for their views on these amendments. 

A spokesperson for the HSE said that the HSE assisted decision-making implementation steering group is satisfied with the amendment made in respect of section 38(2). 

The steering group was specifically concerned about the lack of clarity in the legislation regarding the limitations of the exercise of the authority of the Circuit Court under this section. The amendment clarifies that, following the abolition of wardship, the High Court will be the court that considers matters relating to deprivation of liberty. 

A spokesperson for the Bar of Ireland told MI that the submission was prepared in response to draft legislation at a particular stage in the legislative process, which has now passed. 

“We haven’t formed a view on the further proposed amendments, although it’s something we will keep under consideration,” said the spokesperson.

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