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Imagine this. Your grandmother has been in a nursing home since your grandfather died six years ago. Although she still misses your grandfather, she has settled in well. She goes out to the shops and often has visitors.
From time-to-time, your grandmother becomes upset at night. She wakes in the early hours, goes to the door and tells staff she’s going home to her husband. She wants to leave just as she is and walk along the dual carriageway in the middle of the night.
What would you want the nursing home staff to do?
Most of us would hope that they would talk to our grandmother, that they would listen to her concerns, wait for her agitation to subside, and assist her back to bed. We hope that staff would review the incident the next day. Does your grandmother remember it? Can they prevent it happening again?
But what if your grandmother absolutely insists on leaving in the middle of the night? What should staff to do? Would you want them to simply let her go?
The problem here is that there is no up-to-date, comprehensive legal framework to guide staff in this relatively common situation.
In practice, it is my experience that Irish nursing homes generally manage these situations very well now, with sensitivity, dignity and respect.
But the longer history of residential establishments and various institutions in Ireland clearly indicates a need for clarity for residents and guidance for staff. There are between 25,000 and 30,000 people in nursing homes in Ireland, so this is an issue of great importance.
It is also one of the issues that the Government seeks to address with the Assisted Decision-Making (Capacity) Act 2015. This legislation has been passed by the Dáil and Seanad, signed by the President, and preparations are underway for implementation.
Once commenced, the new Act will place the “will and preferences” of persons with impaired mental capacity at the heart of decision-making about “personal welfare” (including healthcare) and “property and affairs”. Mental capacity is to be “construed functionally”. This means that while a person might lack mental capacity in relation to one specific area (eg, healthcare), they might still have mental capacity in relation to another (eg, finance). And while a person might lack mental capacity at one time (eg, at night), they might have mental capacity at another (eg, during the day).
All interventions under the new legislation will be made “in good faith and for the benefit of the relevant person”. The Act presents a set of principles that includes a presumption of mental capacity, provision of information and assistance, identifying clear necessity for any intervention, minimisation of restriction, dignity, bodily integrity, privacy and autonomy. Making “an unwise decision” will not indicate lack of capacity.
The Act will introduce three levels of supported decision-making for people with impaired mental capacity: (1) A “decision-making assistant”, who will be someone who helps with information and discussions but will not actually make a decision for someone else; (2) a “co-decision-maker”, who will be a joint decision-maker; and (3) a “decision-making representative”, who will be a substitute decision-maker. Arranging some of these supports will involve the Circuit Court.
The legislation also introduces new and revised procedures for “advance healthcare directives” (directing future care) and “enduring powers of attorney” (appointing someone to make decisions for you if you lose mental capacity in the future).
The equivalent legislation in England and Wales includes detailed measures governing “deprivation of liberty” in situations such as those described at the start of this article. It was a matter of regret that the initial Irish legislation did not explicitly cover this situation too, but the Department of Health has now produced proposals for regulating “deprivation of liberty” in Ireland. There is a public consultation process underway and anyone can submit suggestions up until the closing date of 9 March (http:// health.gov.ie/consultations/).
This is important. While most older adults retain full mental capacity, international research suggests that over 60 per cent of nursing home residents are likely to lack mental capacity to make certain decisions at certain times. That is not to say that they are being held illegally in nursing homes, but rather that many need support at certain times in order to make certain decisions. We need clear regulations to provide reassurance to residents and families and guidance to staff in these situations.
This is an issue that matters to almost everyone at some point in life. It is important to get this right, so the Department of Health’s consultation documents merit close attention from everyone who has a family member in a nursing home or similar facility, everyone who works at such locations or visits from time-to-time, and everyone who — someday — might reside in a nursing home themselves.
So that includes everyone.