Dr Fiona Morrissey: Why we all should be having conversations about our wishes and values

Advance care planning tends to be associated with end-of-life care, but it is used in a wide variety of contexts, including mental health and maternity care.
Dr Fiona Morrissey: Why we all should be having conversations about our wishes and values
Advance care planning allows us to have a voice in our healthcare. File Picture.

Our capacity to make healthcare decisions can be impacted at any stage due to factors like illness, accidents or Covid-19.

If we don’t plan for such eventualities, someone else will make these decisions, and the decisions may not be based on our wishes. It is critical to plan for periods when our decision-making capacity may be affected, not just for ourselves, but for people around us. 

Advance care planning tends to be associated with end-of-life care, but it is used in a wide variety of contexts, including mental health and maternity care. The process involves an ongoing engagement with the person as part of a wider conversation on their wishes and life values. In mental healthcare, advance care planning is used to help the person recover, and to manage their future care. Advance planning is as much about recovery and living well as end-of-life care.

However, Covid-19 has prompted nearly one-in-four of us (23%) to give this further consideration but data from the Irish Hospice Foundation shows the number of people accessing the online Think Ahead Form decreased during the pandemic. This may be partly due to lack of awareness of advance care planning in Ireland, the absence of legislation in the area, and a reluctance to discuss these issues.

The Assisted Decision-Making (Capacity) Act 2015 provides a legal framework for advance healthcare directives in Ireland. The legislation was enacted in 2015, but it has not yet been commenced. Advance healthcare directives differ from advance care plans in that they are legally enforceable documents, which have to be respected. 

In the advent of Covid-19, we all need to plan for periods when our ability to make care or treatment decisions may be impacted by illness or other reasons. Despite widespread assumption to the contrary, our next of kin have no legal authority to make these decisions on our behalf if we are unable to do so ourselves. If we don’t plan ahead, these decisions may be made by someone who is not familiar with our wishes or life values. In practice, these decisions are often made by healthcare professionals in consultation with our next of kin, but there is no legal requirement to do this. Conflicts can arise in situations where the person’s wishes are unknown, and this can cause further distress for families and healthcare workers. 

Recent cases in the Irish courts highlight the issues that can arise where the person’s wishes are unknown.

One case involves a woman in her late 20s who has been in a persistent vegetative state for almost 10 years and is receiving artificial hydration and nutrition. The woman’s mother says she would not want to kept alive in these circumstances, but we do not know what her wishes might be in this situation. Another case has arisen in relation to a vulnerable man with schizophrenia and dementia with cardiac and respiratory conditions who has been in a psychiatric hospital for over 30 years and has no known next of kin.

In both cases, nobody has determined what the person’s wishes might be in relation to their care or resuscitation. If an advance care plan was in place or a trusted representative had been appointed to make decisions based on the person’s wishes, it would provide some clarity and prevent some of these problems arising. 

The Assisted Decision-Making (Capacity) Act 2015 urgently needs to be commenced to allow us to formalise our advance care plans, and to allow people to be treated in accordance with their wishes. 

The Think Ahead form can help us to do this, and allows us review our wishes on a regular basis. The first step for all of us is to start having a conversation around our wishes and values with people around us regardless of the context.

Have you had the conversation?

Dr. Fiona Morrissey, Disability Law Researcher, Adjunct Lecturer, School of Law, Centre for Disability Law and Policy, NUI Galway

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