Assisted decision-making bill: Why changes are needed to current laws

Dr Fiona Morrissey, mental health law researcher in Galway, explains why changes are needed in laws governing who can make legally binding decisions.

THE Assisted Decision-Making (Capacity) Bill 2013 is due before the Seanad in early December and is scheduled to be enacted into law this year. This is an important piece of legislation, which may apply to any one of us now or in the future.

The bill aims to secure supports and safeguards for any person who may have difficulty making a decision due to a disability, Alzheimer’s, a road traffic accident or a period of mental ill health.

The legislation also includes provisions for advance healthcare directives, which will allow us to specify future treatment or other life choices in a legal document and/or to appoint a trusted decision-maker, in the event we have difficulty making a decision for ourselves in the future.

In these circumstances, the advance healthcare directive will help your doctor or a family member understand your wishes regarding treatment or other life management choices and specify who you trust to communicate these wishes or to make decisions in accordance with your beliefs and values.

For example, if you are unconscious; are unable to communicate your wishes coherently; or are too weak to talk.

However, the impending legislative provisions on advance healthcare directives discriminate against anyone who may experience mental ill health.

Given, that one in four Irish people experience some form of mental health difficulty during their lifetime, this may apply to any one of us.

The proposed legislation blatantly excludes the use of legally binding advance healthcare directives for the treatment choices of those subject to involuntary detention under the Mental Health Act, 2001.

This is clearly discriminatory under the UN Convention on the Rights of Persons with Disabilities, which the Government is planning to ratify in the near future.

The use of differential standards reinforces the notion that the preferences of individuals with mental health conditions are not respected on an equal basis with others and reinforces stigma.

There were 18,457 admissions to Irish psychiatric units and hospitals in 2013 and 11% of these were involuntary.

(Activities of Irish Psychiatric Units and Hospitals 2013, Health Research Board, 2014) However, the threat of coercive treatment is pervasive for both voluntary and involuntary patients in the mental health context.

Similar legislation in the United States was litigated as discriminatory under the Americans with Disabilities Act, 1990 in the case of Hargrave v Vermont in 2003. After filing a legal challenge for differential treatment in the US court of appeal, Nancy Hargrave asserted that “It seems fundamentally unfair that I choose or refuse chemotherapy which is saving my life, but I don’t have the same right to choose or refuse psychiatric medication.”

The findings of a national study published in the Journal of Ethics, Medicine and Public Health (Morrissey, August 2015) suggests an urgent need for legally binding advance healthcare directives for those who have been involuntarily detained under mental health legislation to provide a sense of control over future treatment, to enhance recovery and to promote trust and respect.

Some 60% of mental health service users in the study felt they had no control over their future treatment and this rose to 78% for those who had been detained under mental health legislation.

One participant described succinctly the sense of control a legally binding advance healthcare directive would provide: “I would finally feel safe if my advance directive was legally binding — it is an awful feeling to know your liberty and rights can be taken away from you at any time and that you have no say whatsoever in your treatment.”

The findings raise concerns about the impact of coercion and suggest an urgent need for measures that promote trust and respect. Individuals who believe their choices will be respected are more likely to engage and benefit from treatment than those who feel coerced and disrespected.

Three quarters of the study participants stated they would be more willing to engage with treatment if they had an advance healthcare directive; half perceived it would improve the therapeutic relationship, while over three quarters believed it would assist family members to understand their wishes.

This is pertinent given that those who were subject to involuntary detention were longer term users of mental health services and had significantly higher levels of multiple readmissions.

Readmissions accounted for 67% of the 18,457 admissions to Irish psychiatric hospitals in 2013. The use of advance healthcare directives may be particularly beneficial for increasing engagement, trust and reducing the need for readmission in this group (Henderson 2004).

MANY clinicians, including consultant psychiatrists who participated in the study, are concerned patients will refuse all mental health treatment or be left untreated if they develop a legally binding advance healthcare directive.

These concerns have a negative impact on clinician willingness to support their introduction in mental health care.

However, the international evidence (Swanson et al, 2006) and national research (Morrissey, 2015) suggests mental health service users are not interested in refusing all treatment and are more interested in using advance healthcare directives to agree treatment with their psychiatrist, and to opt into certain treatments over others based on their treatment history and experience.

The quality of the information in the directive and inappropriate treatment requests were also perceived barriers. However, the evidence suggests the majority of advance healthcare directives contain clear and valuable information (Reilly & Atkinson, 2010) are consistent with clinical practice, and can improve the quality of treatment decisions (Swartz et al, 2006; Van Dorn et al, 2006).

The findings of the national study suggest the majority of mental health service users are more interested in using advance healthcare directives to increase control over future treatment; to provide a forum for communication and to assist with recovery.

Advance healthcare directives may not only be useful as a communicative platform, but can help individuals to re-examine their values; support the capacity to make decisions; build trust in therapeutic and family relationships; and provide an alternative to coercion.

While the equal inclusion of advance healthcare directives in the Assisted Decision-Making (Capacity) Bill 2013 is crucial in promoting respect and reducing stigma, the developmental and recovery benefits may be more important aspect of these documents.

Dr Fiona Morrissey completed a PhD in mental health law at NUI Galway in 2014. She is a member of a number of expert panels on mental health law reform and acts as a reviewer for a number of international journals and for the World Health Organisation (WHO). Fiona sits on the National Advisory Committee (Research, Impact and Evaluation workgroup) for Sage (Support & Advocacy Service for Older People). Her national study on advance healthcare directives can be accessed at http://www.sciencedirect.com/science/article/pii/S2352552515001048

Change will help people like my brother be full citizens

CASE STUDY by Julie O’Leary

People with disabilities have been campaigning for rights-based legislation for years — to participate in society as full citizens. It is that simple, to be exactly the same as everyone else.

I have a physical disability, cerebral palsy. I walk with sticks and use a wheelchair. I need support to get where I need to be in life. With the support of my parents and brothers I have done all I want to. I am 30 now and I have hit all the milestones expected of me. I went to school and college, I have a job, I drive a car, I have bank accounts and control over my money and where I live and who I live with. I make the decisions about my own life.

This all sounds very run-of-the-mill and how most people run their lives; but for people with intellectual disabilities it is often a very different story. Under the law as it currently stands people with intellectual disabilities are assessed under the Lunacy Act 1871, where it is assumed almost automatically that they cannot make legal or financial decisions.

My brother Diarmuid has Down syndrome. This impacts directly on him and on my family.

The new Assisted Decision-Making bill will change things for Diarmuid and for me as his sister.

He will be in a position to get assistance with his decisions. He will be able to appoint different people to help him make each decision he faces in the future.

As his sister this gives me great reassurance. I love my brother to the Moon and back and I want all the opportunities in the world for him.

Going forward Diarmuid will not have to rely on family only and on goodwill to make his decisions. He will have support and a legislative framework to help him with it.

There are some gaps and concerns I have about the new bill. It will need to be properly resourced and it doesn’t deal with marriage or sexual relationships but it will be a stepping stone to real change!



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