The Decision Support Service will implement the Assisted Decision-making (Capacity) Act, enabling people who are physically or mentally diminished to have a say in how they live, but its terms will inevitably be set and reset by the messiness of human need, says
IT’S the new state agency that few will people have heard of, but which many will come to entrust with some of the most personal aspects of their life and death.
The Decision Support Service (DSS), consisting of a director and a large, empty office floor, will be built up over the coming year for the implementation of one of the most reforming pieces of human rights legislation of recent times.
The Assisted Decision-Making (Capacity) Act has been law for two years, but it has yet to be commenced (apart from the appointment of a director).
Áine Flynn, formerly a senior solicitor at KOD Lyons, a law firm specialising in criminal law and human rights, is that director. She headed up the human rights side of KOD Lyons and says she sees the act primarily as human rights legislation.
“I’m hoping to market, so to speak, the DSS as a human rights agency. It has human rights very much at its core,” she says.
So what are those rights? They are the right to have input into decisions about how you live your life, when your capacity to make those decisions, and make them known, is diminished by illness or disability.
The ward-of-courts system was set up for such cases, but it stems from the archaic and insultingly titled Lunacy Act of 1871. It concentrates on people with property or other assets, is run by the courts, and is applied in the most extreme cases.
It has been an all-or-nothing situation: you either become a ward of court (where a court-appointed committee handles your affairs, as is currently the case for 2,800 people) or you rely on an ad hoc arrangement (where well-intentioned family members, carers, and other professionals do what they think is in your best interest).
For many people, their capacity to make decisions varies with the nature of their condition, the kinds of decisions they face, and when they face them.
Ms Flynn says traditional mental status examinations do not allow for such subtleties. “There has been a move away from them, but, I think, it possibly still is happening that people would be asked ‘do you know who you are?’, ‘where you are?’, ‘who the Taoiseach is?’, ‘can you spell this word backwards?’, and so on, and then, following that algorithm, a decision is made that you don’t have capacity and, potentially, don’t have capacity in relation to anything.
“The act introduces the functional test of capacity, which is time-specific and issue-specific, so it’s a recognition that you may have capacity to decide about one matter, but perhaps not about something that is more complex or grave.
“So, if you have an intellectual disability, you might be very well-equipped to say what you want to do with your income or your social welfare payment, or where you want to live and with whom, but, at the same time, you may need greater support around dealing with an inheritance or something like that.”
To ensure the person gets the right balance of assistance and freedom, the act provides for a range of supports.
A person who is aware they have difficulties handling their own affairs may appoint a decision-making assistant — typically a family member or carer — to help them get the information and explanations they need to make a decision for themselves, or they can appoint a co-decision-maker to make the decision jointly with them.
Assistants and co-decision-makers will be registered with, and supervised by, the DSS, which has powers to intervene and investigate, if there is any complaint or doubt about how they are handling their responsibilities.
A further tier of support will come from the appointment, by the Circuit Court, of a decision-making representative, who will make decisions on behalf of someone who, even with help, does not have the capacity to do so themselves. Those decisions must reflect the will and preference of the person, rather than what may be considered to be in their best interest.
Yet another tier comes in the form of ‘enduring powers of attorney’, whereby a person can, at a time when they have full decision-making capacity, appoint someone who will take over when they no longer have that capacity. Again, the DSS will supervise.
Once the act is implemented, people who are currently wards of court will be assessed to see what, if any, arrangement best suits their needs.
But, simultaneously, many more people will begin to enter the various different arrangements provided for. In many cases, that will be prompted by a healthcare issue, but the impetus can come from many different sources.
“It could fall to a solicitor, to the bank manager, to an insurance professional — to all sorts of people — to perform a functional-capacity test and decide whether or not they think the person in front of them has the capacity to take the decision that is on the table. If they think capacity is an issue, they’ll need to get us involved.”
It sounds like a big responsibility and Ms Flynn doesn’t downplay its significance, but she says there will be codes of practice for different professions to follow.
“The National Disability Authority is drafting 11 suites of code on the non-health side, and then HSE has a group working on a guide to the act for all social and healthcare professionals. And, certainly, I know the Law Society has been doing work on it.”
But she believes the level of understanding among professionals in commercial fields is probably “patchy” and that there is a wariness about the changes.
“I fully understand that a lot of professionals are saying ‘this is all about exposure for me, that it’s a whole new way to have to do things, so I want resources and training, that I want an absolutely cast-iron explanation of how this is going to work, so that I’m not going to land myself in trouble’.
“I absolutely get that and I think that’s something that we all have a responsibility to work towards.
“The last thing I want is for someone to think, ‘if I am charging a small fee to do a small piece of work for a vulnerable person — say, as a solicitor — why would I bother, if it’s going to involve so many complicated new processes’?
“So, it does require education, but it’s coming and I think we just need to embrace it and accept that what we have, at the moment, is not satisfactory.” What we have, at the moment, is, she says, “lots of ad hoc processes”.
“The healthcare profession know that ‘next of kin’ has no basis in law, for example, and so the act brings certainty as to who is responsible for what.
“I appreciate, entirely, that families dealing with, perhaps, intellectually disabled adults, might think, ‘I don’t need this hassle’. They’ve been caring for somebody since childhood, they know exactly how to handle the situation, and to say to them ‘there’s now a new way of doing things’, I think, presents difficulties and challenges.
“But this isn’t about finding fault with people who have the best interests of their loved-ones at heart.
“They, above all, have the human rights of their loved-ones as a central consideration, so I think the act and the DSS has to be sold to them as a force for good.”
While the act is the result of years of campaigning by disability rights groups, its application is universal — particularly the section dealing with advance healthcare directives (AHDs), or living wills, as they are sometimes called.
AHDs have become more common in recent years and doctors do their best to honour them — especially where they are made by people with terminal illness who know their prognosis.
An AHD allows them to set out how far they want doctors to go in saving or prolonging their life, and can address issues such as resuscitation and life support.
But there is no legal basis for them and if a fit-and-well person was to make one, on the off-chance they were to become suddenly and critically ill or injured, it’s not clear how much weight their AHD would carry in the emotionally charged setting of an intensive care unit, with a distraught family maintaining a bedside vigil, begging doctors to do everything in their power to keep their loved-one alive.
Ms Flynn has considered such scenes and believes having an AHD registered with the DSS would, in most cases, help families deal with the tragedy they are facing.
“Everybody should have an advance healthcare directive and enduring power of attorney,” she says.
“People fear that it’s an awful burden on somebody to make them their attorney, but it means they have the seal of approval to proceed with decisions, rather than have a situation where there might be a group of siblings and they’re left wondering who should take charge and whether they have to have family conferences about everything. The nature of families is that, perhaps, you don’t all see eye-to-eye, but if you’re simply following a directive, that can be better for relations and put you under less pressure.”
Practical issues arise with the creation of registers of AHDs and decision-makers. They may need to be accessible on a 24-hour basis, so a bespoke IT system, with linkages to hospitals and other institutions, will have to be developed, and there are data-protection questions around who will be allowed to access them.
“All that has to be worked out, but it’s a doable exercise, if a complicated one,” Ms Flynn says.
Nothing can be worked out until the right people are in place, however, and, in the coming weeks, a human resources manager will be appointed to start recruiting the IT, legal, administrative and other professionals necessary to get the agency ready for business.
Ms Flynn estimates that she will need upwards of 50 people, but they may not all be full-time or in one location, as panels of solicitors may be created around the country who can be called upon to help on a case-by-case basis.
These are just the practicalities and, having overseen the merger of two law firms, to create KOD Lyons, she is confident that the right structures and systems can be put in place.
What she is more concerned about, however, is getting mindsets right. The new act places the “will and preference” of the person who is the subject of an assisted decision arrangement at its centre.
In Ireland, up to now, and even in Britain, where assisted decision-making has been law for some time, the guiding principle is the ‘best interest’ of that person.
“That’s a big change, because that sort of paternalism has informed policy for generations,” she says.
It may be in the best interests of a vulnerable person that they enter residential care for their own health and safety, for example, but if their will and preference is to remain living independently, then that’s what must take precedence.
A proportion of older people living in nursing homes could stay in their own homes, if they had sufficient supports and, anecdotally, the view is that many of them would prefer that.
The act could prove a lifeline for them, because they will have to be asked for their consent to be moved to, or retained in, a nursing home, and if they are unable to give consent, a DSS-registered decision-maker, assistant decision-maker, co-decision-maker, or attorney will have to step in and give their honest appraisal.
If the person’s will and preference are to be at home, then efforts will have to be made to honour their wishes.
That could put pressure on the HSE’s stretched home-care packages and community supports, but Ms Flynn says resources should not be the decider of human rights. The new procedures will apply to all new residents — not just of nursing homes, but other residential care units, too — but they will also apply retrospectively to existing residents, who did not give full consent to their care arrangement.
“Effectively, they are being contained,” Ms Flynn says. “They are subject to constant supervision and their movements are curtailed, so they don’t have their liberty and they are not consenting to that arrangement.
“What safeguards are there around that, who is monitoring that, who has give their approval to that deprivation of liberty? It’s not provided for in law.
“Something like 80% of the nursing home population would have capacity issues, because they would be dementia sufferers and, in a great many cases, steps need to be taken to safeguard them and, therefore, doors are locked and movements are restricted. But who says it’s alright to lock that door? That’s what’s going to be regulated.”
New Deprivation of Liberty Safeguards, or DOLS, will be written into the act to ensure the proper procedures are gone through, before a person is placed in a setting where freedom is restricted.
Those already in residential care will have their case reviewed either by the courts or a specially convened tribunal — the mechanism has not been worked out, yet. Upwards of 25,000 cases may have to be reviewed. It would require, Ms Flynn warns, “an awful lot of work”.
In many cases, the existing care arrangement may be found to be working perfectly well for all concerned, but Ms Flynn won’t second-guess what scenarios might arise — under the DOLS or any other provision in the 137-page act.
One section may have to be rewritten, depending on the outcome of the next abortion referendum, and any ensuing legislation. It states that where a pregnant woman lacks capacity and has an AHD that stipulates refusal of certain treatments, but which doesn’t specify what should happen if she is pregnant at the time it is consulted, then it should be set aside and treatment continued for the sake of the unborn.
Where the woman lacks capacity and has an AHD that stipulates refusal of certain treatments, even if she is pregnant, an application must be made to the High Court to decide how to proceed.
So, despite the groundbreaking nature of the act, as it is currently written, it probably would not have made much difference in the tragic case of Miss P, the young woman in the early stages of pregnancy who was declared brain dead, but kept artificially alive, against the wishes of her parents and partner, for three weeks in 2014, while legal argument raged over what to do about her foetus.
“The act can’t cover everything. There are codes of practice which will attempt to cover as much as we can envisage, but not all the answers will have occurred to me, yet, and not all the answers are contained in the act. That’s why we will have litigation over this,” Ms Flynn says.
She makes this prediction in a matter-of-fact manner and says it is nothing to be afraid of. “There are solicitors just like me — probably former colleagues of mine — who will be going through this with a fine-toothed comb and who will, undoubtedly, challenge aspects of it.
“That’s okay. If a law is going to work well, it has to be robust and, for it to be robust, we have to find out if it has weaknesses and address those.”