The Assisted Decision-Making (Capacity) Act 2015: an overview of the Act and its guiding principles for Psychologists.

Catherine O’Kelly  and Garret McDermott

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Abstract

The current article aims to provide a simple and succinct overview of parts of the Assisted Decision-Making (Capacity) Act 2015 that may be relevant to Psychologists. This Act marks a departure in the field for Ireland as it entails a significant conceptual shift away from the previous ‘best interests’ focus towards one that emphasises ‘will and preference’. In this article, we outline the nature of the Act. We provide a brief overview of traditional approaches to understanding capacity. We describe the definition of capacity under the Act.  Finally, we highlight the key guiding principles of the Act with which all Psychologists should be familiar.

 

Introduction

The advent of the Assisted Decision-Making (Capacity) Act 20151 brings a range of challenges for healthcare professionals and Irish society in general.  It heralds a welcome new era in which a rights-based approach takes centre-stage when it comes to decision-making capacity.  The current article aims to provide a straightforward overview of key parts of the Assisted Decision-Making (Capacity) Act 2015 (hereafter called the Act) that will be relevant to Psychologists in Ireland. Some of the fundamentals of the Act will be set out.

Firstly, the traditional approaches to understanding decision-making capacity will be explored, as well as the functional definitions and principles contained in the Act. The authors’ explanations of these underpinning principles may help to clarify many issues that arise about the Act and assessment of decision-making capacity.

This article will not address Enduring Powers of Attorney, Advanced Healthcare Directives or proposed legislation on Safeguarding Vulnerable Adults. Although very relevant and worthy of discussion, these topics require significant exposition in their own right.

Psychologists are only too aware that the outcomes of assessments of decision-making capacity can literally be life-changing and the Act means that the weight of responsibility for these assessments no longer lies solely with medical consultants. In this context, numerous questions may arise for Irish Psychologists and other health care professionals. It is the hope of the authors that the current paper will help to communicate some of the key points about the Act. In an associated article, the authors offer opinions on some of the practical questions that are being discussed among Psychologists as we await the full commencement of the provisions of the Act.

 

What is the Act?

The Act is a key piece of legislation that was enacted in December 2015. It is a statutory framework to support decision-making by adults who have difficulty making decisions without help.  Parts of the Act that have already been commenced, i.e. are now in legal force,  include Sections 1, 2, 5, 6, 82, 91(1), 91(2), 94, 95, 97 ,98, 1031,2.  Most notably, perhaps, this includes establishing the Decision Support Service within the Mental Health Commission and the office of the Director of the Decision Support Service. Substantial parts of the Act remain to be commenced in the coming years.

Thus far, 17 draft codes of practice have been devised with significant input from the National Disability Authority. These codes are currently being reviewed by the Director of the Decision Support Service and further public consultation is likely.  They comprise both healthcare related and non-healthcare related codes including procedures for financial and legal professionals.  Full commencement of the 2015 Act is expected by 2020 although this is contingent on multiple elements including the judicial structures being in place to work under the new arrangements.

More specifically, the Act aims to support persons who:

  1. For one reason or another are having difficulty reaching a specific decision without support or assistance;
  2. May be able to make some decisions without support but struggle with others;
  3. Currently require support to make key decisions or may require such support in the future1,3

The Act will replace outdated laws from the 1800s such as the Lunacy Regulations (Ireland) Act (1871)4 which govern Wards of Court.  Under that regime people deemed to lack capacity legally had no participation in decisions made on their behalf and their status as a Ward was not subject to review; a situation that could potentially persist indefinitely.  The Act will also update legislation regarding Enduring Powers of Attorney from the 1996 Act5 which did not address healthcare issues.  Under the 1996 Act, Enduring Powers of Attorney required High Court applications to address issues that arose, and there were no reporting requirements to ensure standards were being met by Attorneys.

 

Who is the Act for?

Well, everyone in fact. We all have the potential to lose capacity through injury or illness either temporarily or permanently. This can be life-altering.  The Act aims to provide a framework that protects the rights of anyone whose capacity may be called into question. Those with dementia, acquired brain injuries and intellectual disabilities are among the groups where capacity is often questioned.  In such cases Psychiatrists often (and Psychologists occasionally) carry out assessments of decision-making capacity. Of course, the Act is not limited to these groups. The decision-making capacity of people with mental health difficulties, of older adults, and of people who may make choices that are seen to be unwise is also often questioned. Assisted decision-making legislation is a significant change to how large numbers of our population will be supported to exercise their legal rights to self-determination related to the most fundamental of matters.

What are the traditional approaches to capacity?

With the advent of the new Act, it is timely to revisit the inherent tension in the field between two important ethical principles. These are: the right to autonomy (or self-determination) versus the right to protection. When a person makes decisions that are seen by others as unwise, unsafe or out of character this tension can come to the fore. In clinical practice, individual practitioners and teams are often tasked with asking whether a person is (still) a so-called competent decision maker. In healthcare settings, duty of care is very much tied to the right to protection. One outcome of this strong but important association can be a cautious, risk averse and overly protective approach that could potentially fail to fully recognise and support the right to autonomy among those with great need. These issues are not simple and often not easily resolved.

The status approach to capacity involves expert opinions – often medical – as to whether a person has capacity to decide matters relating to their lives and welfare.  It is an ‘all or nothing’ or global approach that may determine the person’s decision-making ability based on diagnosis (e.g. Moderate Intellectual Disability) or performance on tests such as the Mini Mental State Examination or other such brief assessment tools. The current Irish Wards of Court system is, at least in part, consistent with such a global approach.

Another dominant approach for determining capacity has been called the outcome model.  This is the practice of assessing capacity based on the opinion of the assessor as to whether or not the decision being made by the relevant person is ‘sensible enough’.  If the assessor decides it is sensible enough the person is deemed to have capacity.  If not, the person is deemed to lack capacity.

The status approach to judging capacity and the outcome model have previously been dominant in clinical practice. They may be implicit rather than explicit and, at times, are difficult to challenge. They are more in line with the right to protection than the right to autonomy. The Act shifts the emphasis towards self-determination.

 

In what way does the Act depart from the traditional approaches to capacity?

The Act is grounded in a social, rights-based model and promotes a functional approach to determining capacity. As such, decision-making capacity is seen to be time specific and issue specific. This allows a greater level of flexibility and, from a clinical standpoint, takes account of important realities including that capacity may fluctuate over time or that lack of decision-making capacity in relation to one decision does not imply lack of capacity in relation to a separate decision.

The Act enshrines a functional approach to determining capacity. It means that the relevant person’s capacity to make a specific decision, on a specific topic, at a specific time should be determined. This recognises that a range of skills are involved and is the antithesis of the global ‘status’ approach mentioned. These skills include the ability to understand relevant information, assimilate it, weigh it up and communicate a decision. It is to do with the way in which the person makes the decision, not the nature of the decision itself. Under the Act, a person also has the option to make an ‘unwise’ decision and this should not be a basis upon which to decide that the person lacks capacity.  In this way, the Act is also the antithesis of the so-called outcome approach.

The Act is essentially at odds with the traditional approaches to capacity mentioned above laying out, as it does, the various levels of decision-making assistance available to the relevant person. The fundamental goal is to enable people with different levels of decision-making ability to have the greatest amount of autonomy possible; these different levels reflect a nuanced approach to capacity that has heretofore been absent in Irish legislation.

How does the Act define capacity?

Under the Act, there is a clear delineation between mental capacity and decision-making capacity ultimately meaning that decision-making capacity is separate from, for example, intellectual functioning. All adults over the age of 18 shall be presumed to have decision-making capacity until proven otherwise.  Furthermore, a person’s capacity shall be assessed on the basis of his or her ability to understand, at the time that a decision needs to be made, the nature and consequences of that decision in the context of the available choices at that time.

The test of capacity is very clear in the legislation; a person lacks capacity if unable to understand information relevant to the decision being made, is unable to retain it long enough to make a voluntary choice, is unable to use the information to weigh it as part of the decision-making process or is unable to communicate the decision made by any method. This is summarised in Table 1, below.

 

Table 1: Functional definition of capacity includes four key elements

Test of capacity
1.    The person is able to understand information relevant to the decision being made
2.    The person is able to retain the information long enough to make a voluntary choice
3.    The person is able to weigh the information as part of the decision-making process
4.    The person is able to communicate the decision made (by any method)

 

The Act signals a fundamental shift in how we understand and assess decision-making capacity. Furthermore, the burden shifts away from the onus being on the relevant person (decision-maker) to achieve scores on specific assessment tools or to provide ‘responsible’ decisions as deemed by the assessor towards the assessor facilitating and enabling the relevant person to demonstrate capacity. This ‘meeting the person where they’re at’ approach signals a recognition of the complex nature of capacity issues and shows a flexibility and respect for the individuality of those to whom the legislation applies.

The Act includes provision for where the relevant person has planned ahead in terms of having advanced healthcare directives and has set up an enduring power of attorney. The current focus is on situations in which the person has not adequately planned ahead. Where capacity to make a specific decision is justifiably questioned an assessment of decision-making capacity will take place. The outcome of such an assessment introduces an approach characterised by stepped levels of support. Assessments will be required to indicate the level of the person’s decision-making capacity. The relevant person may, of course, be found to have adequate decision-making capacity and therefore no support is required.

Where the outcome of the assessment is that the person does not have adequate decision-making capacity to independently make this decision at this time there are three possible levels of support outlined in the Act.

  • The first is that a decision-making assistant can be chosen by the relevant person to support him or her. In this case, the decision-making assistant is not involved in decision-making per se but, rather, facilitates and enables the relevant person. This indicates an unobtrusive level of support that fosters independence.
  • The second is that a co-decision maker may be appointed by the relevant person to assist with making the decision. This is a more intrusive level of support that recognises that some people may not independently have capacity to make a specific decision but with the right supports in place they will still play a large role in decision-making.
  • The third level will entail the circuit court appointing a decision-making representative and will apply where an assessment of decision-making capacity has a clear finding that the person lacks capacity. This opens practical questions in relation to how long this process will take and the need for some decisions to be made urgently. The Act stipulates that if the decision is important or significant then the Decision Support Service or Circuit Court will play a role. In cases of urgency where this is not feasible, decision supporters must act in good faith and in accordance with the guiding principles of the Act.

 

What are the guiding principles of the Act?

A number of key guiding principles underlie the Act. Given our commitment under our code of ethics to ‘respecting the rights and dignity of the person’ it may be increasingly important to make ourselves aware of these principles6.

 

  • Presumption of capacity

All people over the age of 18 shall be presumed to have capacity. This is the basic starting point for every person to whom the Act applies.  The relevant person shall not be considered unable to make a decision unless all practicable steps have been taken, without success, to facilitate him or her to do so.  The onus of facilitating this lies on the assessor of capacity as noted above.  Furthermore, the Act outlines that people have the right to make unwise decisions.  This principle raises complex questions about duty of care and the culture of risk aversion that often arises in health and social care facilities.

  • Proportionate and least intrusive interventions (only when necessary)

In terms of providing interventions, subsequent to finding a result of a lack of capacity, the guiding principles state that there shall be no intervention unless it is necessary to do so and any intervention made shall be done in the least intrusive manner possible. It should minimise the restriction of the relevant person’s rights and freedom of action and

‘have due regard to the need to respect the right of the relevant person to dignity, bodily integrity, privacy, autonomy and control over his/her financial affairs and property’7.

 

Any intervention should be proportionate to the significance and urgency of the matter which is the subject of the intervention. This should also be as limited in duration as is possible given the particular circumstances of the situation.  Guiding principles state that an intervener must permit, encourage and facilitate the relevant person to participate as fully as possible in the intervention highlighting the need for a range of communication methods to be available.

  1. Will and Preference’ rather than ‘Best Interests’

One of the key guiding principles of the Act is the emphasis on the past and present will and preference of the individual in so far as these are ascertainable.  This represents a subtle yet significant shift away from the approach taken in some nearby jurisdictions including the UK which privileges the ‘best interests’ of the person .  It also departs from traditional custom and practice in Ireland.

This departure from the UK phraseology suggests to the current authors an effort to prevent the difficulties encountered in the UK in implementation of their ‘best interests’ guidelines.  The House of Lords Select Committee for Health review of their 2005 Mental Capacity Act8 found that ‘best interests’ is frequently interpreted in a medical/paternalistic sense. They highlighted that this term is one of the most misunderstood and abused across health and social care professions.

In order to privilege the rights of the relevant person, the Irish Act stipulates a duty for the intervener to act ‘at all times in good faith and for the benefit of the relevant person’.  Use of different terminology such as ‘good faith’ and ‘for the benefit of the person’ may seem purely semantic but it signals a concerted effort to distinguish the new Irish legislation from the precedents set in the UK.  It signifies a change from the approach in which experts decided on the best interests of relevant persons even where this differed significantly from the person’s past and current expressed wishes.  Fundamentally the new Act places the ‘relevant person’ very emphatically at the centre of the decision-making process and in so doing raises uncomfortable questions about how we can best respect an individual’s basic right to dignity and autonomy while being mindful of the duty of care to vulnerable adults.

Practical Implications

The guiding principles of the 2015 Act interlace to produce a complex array of issues; take the example of a frail older person wishing to return home from hospital to a house that has been deemed unsuitable for them (e.g. due to a risk of falls and absence of ideal supports). Say that the team of healthcare professionals are of the view that it would be in the person’s best interests to move to a nursing home or care facility. Where the person has the decision-making capacity to make this decision then their wishes should be respected despite the risks. Imagine further that the person’s decision-making capacity is questioned. If the person is found to lack the capacity to avail of the decision-making assistant route or the co-decision maker route, a decision-making representative must be assigned to make the decision on the person’s behalf. The ‘right to make an unwise decision’ guiding principle and the ‘past and current will and preference’ guiding principle could combine to indicate that the decision that should be taken is that the person returns home. This decision would be on the basis that the person’s will and preference were clearly ascertained.  In such circumstances, it seems to the authors that the Act is on the side of the relevant person even where a decision-making representative must be assigned, and the healthcare team believe the decision is unwise. How Psychologists and other healthcare professionals will reconcile this with their duty of care remains unclear and may require court intervention to resolve the conflict.  The tension between ethical principles such as autonomy and duty of care towards vulnerable adults is a complex one.  As Atul Gawande remarks in his book ‘Being Mortal’, “…We want autonomy for ourselves and safety for those we love…Many of the things that we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe upon our sense of self”9.

A draft guidance document from the HSE Assisted Decision Making Steering Committee10 notes that there are times in complex cases when staff may be asked to explain the reasoning behind their decisions if the relevant person’s decision leads to serious harm.  The document states that what is vitally important is clear documentation of the reasoning and the adherence to the guiding principles of the 2015 Act.  The document also acknowledges that supporting people to make their own decisions (which, as above, may seem unwise) means accepting the potential for poor outcomes.  This must entail a widespread cultural shift away from paternalism and risk aversion in relation to the vulnerable adults in our society.  This shift is embodied in this legislation but must be upheld and supported in the ethos of the HSE, broader health and social care services, and the judiciary system.

 

Conclusions

The current paper aims to provide a simple and succinct overview of some elements of the Assisted Decision-Making (Capacity) Act 2015. It outlines that the Act entails a shift away from the traditional ‘status’ and ‘outcome’ approaches to assessing decision-making capacity which focused on ‘global’ capacity to a functional definition that is time and issue specific. Under the Act, the test for capacity has four parts: the person can understand information relevant to the specific decision, the person can retain information long enough to make a voluntary choice, the person is able to use the information to weigh it as part of the decision-making process and the person can communicate their decision by any method.

The Act is based on a social, rights-based model that, for example, emphasises autonomy and the person’s will and preference rather than their best interests. Although this is progressive and reforming it differs from some of our close neighbouring legal jurisdictions and raises many practical and ethical questions. While we await commencement of the remaining parts of the Act, the current authors aim is to encourage discussion and debate. It is our view that attempting to apply the guiding principles will help to prepare us for full implementation of the Act. The guiding principles are the presumption of capacity, proportionate and least intrusive interventions, and an emphasis on will and preference rather than best interests.

In closing, we await the commencement of the remaining provisions of the Act. As a result of the Act however, Psychologists, and other healthcare professionals may be faced with ethical challenges associated with it and with assessments of decision-making capacity. In the meantime, we have an opportunity to discuss the issues, to reflect on our current practices, and to prepare for the changes that will be necessary.

Authors

Catherine O’Kelly: Clinical Psychologist, St. Vincent’s Hospital Fairview Mental Health Rehabilitation Team, HSE CHO DNCC, 140 St. Lawrence’s Road, Clontarf, Dublin 3. Contact: catherine.okelly2@hse.ie  (corresponding author).

Garret McDermott: Principal Clinical Neuropsychologist, Psychology Department, Tallaght University Hospital, Tallaght, Dublin 24. Contact: garret.mcdermott@tuh.ie

 

References

1. Assisted Decision-Making (Capacity) Act 2015, Ireland [statute on the internet], c.2015, [cited 2018 October 06]. Available from:

http://www.irishstatutebook.ie/eli/2015/act/64/enacted/en/pdf

2. Mental Health Commission. Current Status of the Decision Support Service [Internet]. Dublin: Mental Health Commission; Undated [cited 2018 October 25]. Available from:

https://www.mhcirl.ie/DSS/CS_DSS/

3. Condell M (Legal Advisor SAGE). Consent and Capacity: Implementation in Practice. In Nothing About You, Without You ADMA update training; 2017 June 24; Dublin, Ireland.

4. Lunacy Regulations (Ireland) Act 1871, Ireland [statute on the internet], c1871 [cited 2018 October 25]. Available from:

http://www.irishstatutebook.ie/eli/1871/act/22/enacted/en/print.html

5. Enduring Powers of Attorney Regulations 1996, Ireland [statute on the internet], c1996 [cited 2018 October 25]. Available from:

http://www.irishstatutebook.ie/eli/1996/si/196/made/en/print

6. Psychological Society of Ireland. Code of Professional Ethics. 2011. Available from:

https://www.psychologicalsociety.ie/footer/PSI-Code-of-Professional-Ethics-3

7. Rickard-Clarke P (Solicitor). Assisted Decision-Making: Challenges and Opportunities for Health and Social Care Professionals. In HSE National Conference; 2016 February 22; Dublin, Ireland. Available at:

https://www.hse.ie/eng/about/who/qid/other-quality-improvement-programmes/assisteddecisionmaking/assisted-decision-making-challenges-and-opportunities-for-health-and-social-care-professionals.pdf (cited 2018 October 25).

8. House of Lords Select Committee on the Mental Capacity Act 2005. Mental Capacity Act 2005: Post legislative scrutiny. London: The Stationary Office Limited, 2013 – 2014.

9. Gawande, Atul. Being Mortal: Illness, Medicine and What Matters in the End. London. Profile Books. 2014.

10. Health Service Executive. Assisted Decision-Making Act (2015): a guide for health and social care professionals (draft form for consultation). March 2017.

 

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