1. What legal protections do vulnerable adults have? The Irish Supreme Court stated in 1996 that the fact that a person has diminished capacity does not mean that they don’t have the same legal rights as everyone else.
Although we all equal legal rights, many people have difficulty in exercising those rights and therefore, the Constitution takes account of difference in capacity. Indeed, international law is also clear on this point, the UN Convention on the Rights of Persons with Disabilities provides that vulnerable adults have rights equal to all others. However, in practice, sometimes, society has tended to ignore this principle. Still, the Assisted Decision-Making Capacity Act 2015 clearly says what is predominant is the ‘will and preference’ of the individual person, regardless of disability. However, in the past as a country, as a people and as a society, we actually have not respected the individual rights of vulnerable adults.
2. What is happening with the Assisted Decision-Making Capacity Act 2015?
This piece of law has been enacted but not fully commenced. A lot of work is being put in place at the moment in terms of drafting codes, the Office of the Director of Decision Support Service has been established – she is setting up her office, and we are told the Act is due to be fully commenced next year. However, this is not a reason why even now we shouldn’t respect individual rights. We tend not to and even cases coming before the courts in terms of people who lack capacity, those applications are made under the 1871 legislation – a lot of our practice, customs and thinking is still at 1871. We have a lot catching up to do, and much of the international human rights law says that we must respect each person as an individual human being with their own individual rights and we don’t do that.
3. How does the Act impact on Medical staff?
Again our custom and practice have been to say that a doctor might make decisions which he or she thinks is in the best interest of the person, without having due regard to what that person actually wants themselves. Medical staff may act in a manner which they believe to be in the best interest of the patient, but the patient’s beliefs and values may be entirely different. The individual rights of the patient may not be respected. We have to move away from the best interests principle, which in the Irish legislation we have done, as it respects the will and preference of the individual. We also live in a society where people are afraid to actually respect those rights because they are afraid that something will happen in an adverse event in which case they may be sued. We have to change our thinking around this. Even though I am making an unwise decision or what might appear to you to be an unwise decision, the law is now saying that you must respect my will and preference. If I can understand the decision I am making, I have the right to make that decision. Even if you disagree with me, I still have the right to make that decision. Another issue arises if I haven’t the capacity to make the decision. But we need very clear safeguards if we are going to override in any way the person’s will and preference.
4. Are there are different degrees of mental capacity?
There is and at the moment, again coming back to our 1871 legislation, it is an all or nothing approach. So, if I lack the capacity to make one decision, it is presumed, I lack the capacity for all decisions. Under our 2015 Act which obviously is not fully commenced yet, it recognises many different levels of capacity, and I can enter into different arrangements depending on my level of capacity. If a person has been diagnosed with dementia, for example, that person may still be well able to make decisions, but they may need help in collating information and in interpreting that information. If a person has a stroke, they will need assistance in communicating their decisions, and they can appoint a decision-making assistant to help with that. They are still making the decisions but are receiving assistance, and they can do that by nominating somebody that is suitable, somebody they can trust. The second level up, then the Act provides for a Co-decision maker. So if a person’s capacity is a little more challenged and they really can’t make the decisions on their own, they can appoint a Co-decision maker who will assist them and advise on some of the issues that they need advice on. Then there is a third stage where a persona lacks capacity. In that case, they can either have provided for that lack of capacity in advance by making an Enduring Power of Attorney in relation to legal and financial decisions and appoint a suitable person, a person they can trust or more than one person. On the other hand, in terms of care decisions or the place where they wish to receive care, they can appoint somebody, or they can make those decisions in advance by way of an Advance Healthcare Directive. This ensures their wishes are fully respected in the event they lack capacity. If those arrangements are not in place, then there can be an application to the court. Under the new legislation again, the court is obliged to look at me as an individual, to respect my rights and consider if I have articulated my views and wishes in the past. So, my will and preference still must be taken into account so far as is possible to ascertain those.
5. How do you go about getting a decision-making assistant?
It can be a family member; it can be a friend; it can be anybody that you trust.
6. Do you recommend that everyone should have an Enduring Power of Attorney and an Advanced Healthcare Directive?
7. Is there an ideal age for doing that?
A piece of recent research indicated only 6% of the population had done an Enduring Power of Attorney, and they were in the older age grouping. It is really important even when you are younger to have an EPA and an AHD so in the event of there being a critical situation such as a road traffic accident for example that documentation is in place. This is one of the significant issues in terms of the State being of assistance. The State should have a national campaign to encourage advance decision-making, for the simple reason that a lot of the delay in discharges from hospital arises because people are not aware that they can consent to treatment or to where the place of care decision in an AHD or managing their finances in an EPA. We end up with very expenses care in acute beds, with huge delays and not enough appropriate care for the person because we are waiting on a wardship application which may take months. Therefore it is really important, and more and more when the Act is fully commenced, healthcare professionals and others will want to know what a person’s wishes are and the best way of articulating my wishes are to write them down.
8. Is there the potential for Fraud?
Abuse can be minimised with proper pre-planning and appointing, but no amount of legislation will deal with people who want to do bad things and abuse people. However, having said that we have no proper adult safeguarding legislation. We have very large figures for abuse even though we don’t capture them on a national basis, but the figure that is captured by the HSE would indicate say in 2017 about 10,000 cases of concern. That was increased in 2018 up by about 25% because Safeguarding Ireland did a public awareness campaign about this and another piece of research, indicates that 10% of the Irish population have witnessed abuse in the previous 12 months. Now if you extrapolate that to say that there are 3.8m adults in Irish society, that would imply that 380,000 people had witnessed abuse. Very few of them are reported because we don’t have the proper legal framework or legislation to tell us who to report to. It is one thing to report to the HSE, which is the health area. Most of the abuse takes place in the community where people are not interacting with services. A lot of the abuse, particularly of older people, is financial abuse. We need a mechanism to identify what abuse is, to understand it is abuse, to detect it and to ensure that the perpetrators are actually caught. There may be criminal offences and even if people are pilfering the pension or doing people out of other income for example, such as family members collecting the pension and keeping some of it, that is theft.
There is a huge area of psychological abuse of people of very vulnerable people who are under the control of somebody. This is a huge issue, and again as a society, we have to embrace that issue and recognise that we have to do something about it. We need adult safeguarding legislation which also should have a mechanism to put in procedures and policies to prevent abuse and when others of us see it and should call it out and make sure it is addressed.
9. Who is our next of kin?
Our next of kin are the people that are related to us, and that question is asked when we go into hospital, but really the question we should be asked is who do you want me to communicate with in an emergency? I may not have a next of kin or I may have next of kin that I am not talking to – a friend may be the most appropriate person for me. In a lot of forms in hospitals and nursing homes etc. have that question– who is your next of kin? The question should be, and I understand the HSE are looking at this issue, to say who is your emergency contact? Sometimes, family members think they can make health care decisions on your behalf; this is not the case. So again, it is up to the individual person to appoint whoever they wish, and that person does not have to be a family member. Family members do not have legal status to make decisions on behalf of another unless they have appointed or given that authority by the individual to do so.
10. Does a next of kin have an entitlement under a Will?
The old legislation actually in terms of inheritance spoke about next of kin and the heir at law, but that’s ancient 17th century/18th-century legislation. Our thinking hasn’t moved on that much in many ways from, and people can make claims against an estate. A provision like a husband and a wife has an automatic right to a share of the estate unless they have contracted out of that. Children don’t have an automatic right but can make an application to the court. You do not have a right to make decisions on behalf of a relative unless you have been given authority by the relative to make those decisions. In many cases again it is really important when somebody is appointing somebody in their Power of Attorney or Advanced Healthcare Directive, they are selecting a suitable person, and under the new Act, the director has to satisfy herself that that is a suitable person. In other words, if somebody is bad at managing money, I should take that into account if I am appointing somebody in my Enduring Power of Attorney. If I have to run a business and I lack capacity, who is the attorney that is going to run that business, who is a suitable person to do that? It comes down really to the person you trust and a suitable person rather than anybody that is related to you.
Capacity law should respect every person’s independence, dignity and freedom to make their own choices in line with their right to self-determination.