This article has been written especially for Helping Hands and comes from Baroness Ilora Finlay’s work as Consultant in Palliative Medicine at Velindre Cancer Centre and Honorary Professor of Palliative Medicine, Cardiff University.
About Ilora Finlay
Baroness Ilora Finlay is a Consultant in Palliative Medicine at Velindre Cancer Centre and Honorary Professor of Palliative Medicine, Cardiff University.
Established the Marie Curie Hospice in 1987 and the Diploma/MSc in Palliative Medicine in 1989; lead for Palliative Care in Wales 2008-2017 and developed wider bereavement support. Read more about Ilora here.
The Inception Of The Mental Capacity Act
Since the Mental Capacity Act (MCA) came into law in 2005, it is likely to have featured in all of our lives in some way. You may have someone close to you who has been diagnosed with dementia or who has a cognitive impairment or learning disability, or who is experiencing trauma that is affecting their decision-making ability.
The MCA requires us to help people to make their own decisions whenever possible by providing the support they need. When a person lacks the capacity to make a specific decision at a specific time, and the decision cannot wait for capacity to be regained, then a decision has to be made in that person’s best interest. The Mental Capacity Act lays out a framework for best-interest decision-making to which the assigned decision-maker must adhere.
The Mental Capacity Act also allows for others to be designated as decision-makers in the future, through the ability to create a lasting power of attorney (LPA). Such powers can be given for health and welfare decisions and can be designated at an enhanced level for life and death decisions. Powers can also be given for financial affairs. An LPA can be created through the online portal of the Office of the Public Guardian and must be registered with the Public Guardian before it has legal status. It is important to realise that any LPA only comes into effect when the person lacks capacity. There is a widespread misunderstanding that an LPA for financial affairs hands over decision-making immediately, which is why many people have been hesitant to create an LPA in advance. However, when they lack capacity and need an LPA in place, they are past the point at which they can appoint somebody to be the attorney.
Even when someone lacks capacity for a decision, those taking a decision on their behalf must still make every effort to involve them as much as possible in the decision. Some decisions require less capacity, like picking an outfit or deciding what you want from the shop, but others require more capacity and can be taken with support, like making an advanced care decision. Still, others may be more complex and need the decision-making to then be taken almost completely by the person who holds the LPA, such as selling shares or accessing funding to cover care costs.
Support For Later Life
Support must be given in a way that builds on a person’s strengths. For example, a person who has difficulty reading may find pictures easier to understand or can cope with information in an easy-read format. Others may need to be taken through a scenario such as a hospital admission with photographs or a video. It is easy for a person to feel overwhelmed or intimidated by a decision, or pressurised by a sense of duty to decide one way or another. Splitting decisions down into component smaller decisions, with the relevant supporting information, can provide the support for a person to still make their own decisions.
Only when all efforts at supporting a person to make their own decision have failed, should one then move to taking a decision on their behalf which is in their best interests. The Mental Capacity Act is clear that no one can make a best-interest decision with the intention of doing any harm to the individual and the person’s decision-making interests are only relinquished in the event of death.
When a decision has to be made in a person’s best interest, there are some key considerations. Even though a person may have a disturbance of their mind or brain activity, it may not necessarily interfere with their ability to make the decision in hand and consideration must be given as to whether they can retain the information long enough to make a decision. As well as retaining information, they need to be able to weigh up the implications for themself and others and then, finally, communicate their decision.
When the person lacks capacity for a specific decision at a specific time, and a best-interest decision must be taken for them, it is important to be clear who is the decision-maker. That person has a responsibility to consult with those who know the person well, both family and friends as well as caregivers, to find out the person’s beliefs and values, to understand what the person would have wanted if they had been able to make the decision and to put aside all unconscious bias as they try to put themselves in the shoes of the person for whom they are making the decision.
The MCA empowers people who lack the capacity to make their own decisions about their health, wellbeing and finances. It redefines how society should think about what it means to value everyone and their autonomy. For instance, as we have learnt more about people with dementia, society has been forced to move away from a blanket judgement over whether or not a person can take decisions to a much more person-centred approach that respects the values and beliefs of each person.
It is important to recognise the social reality and importance of family, friends and community in decision-making. We exist in a society where we are all dependent on each other. Those with impaired capacity also have value in our society and often need the reassurance that they can still contribute, even though it may be in different ways to before. Their presence may provide encouragement to their friends and family, and they can contribute to society and the next generation.
The National Mental Capacity Forum, of which I am the Chair, brings together people who are responsible for implementing the MCA across all sectors. During the pandemic, we produced a series of ‘rapid response’ webinars to tackle the main issues of the day as they emerged and to support staff in all sectors who suddenly found themselves working in very difficult and different circumstances.
If you find yourself having to make a best interests decision on behalf of someone else close to you, there is lots of guidance and advice to support you in this process.