‘A peacefulness follows any decision, even the wrong one.’
(Rita Mae Brown)
Decision making forms a central part of any quality of life construct. In order to live a life we each find meaningful, we need to be free to make decisions, both large and small. People with acquired brain injuries, for the most part, were previously used to making all kinds of decisions. This freedom to make decisions is frequently curtailed, not just by the impact of the brain injury, but by societal and organisational reactions to the challenges of caring for people with brain injuries In the absence of legislation there exists a vacuum whereby the person’s basic human right for self-determination can be, and has been, diminished.
Understanding of the relationship between quality of life and decision making behoves organisations to constantly ask questions of themselves—‘is this person being supported to make their own decisions?’ The passing of capacity legislation makes this question not only a moral obligation, but a legal one.
In 2008 the Scheme of the Mental Capacity and Guardianship Bill was published. The purpose of this bill, which has yet to be passed into law, is to modernise the law about decision making for vulnerable adults, replacing a law going back to 1871. Under this scheme a person is presumed to have capacity to make decisions until proven otherwise. In other words, each person has the right to make decisions (and mistakes) independently, unless proven incapable of making decisions.
How is capacity defined?
Capacity is not about a person’s intellectual functioning, nor is it about a person making ‘good’ choices. Capacity refers to the person:
— understanding information which is relevant to the particular decision,
— using the information to reach a decision, which may involve:
(a) appreciating its personal significance; and
(b) reasoning with it; and
— communicating a choice, whether through talking, sign language, or any other relevant means.
Capacity as a human right
‘Where after all do human rights begin? In small places, close to home—so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual persons: the neighbourhood he lives in, the school or college he attends, the factory, farm or office where he works. Such are the places where every man, woman and child seeks equal justice, equal opportunity, equal dignity without discrimination.’ (Eleanor Roosevelt in a speech delivered at the 10th anniversary of the Universal Declaration of Human Rights in 1958).
People with acquired brain injury, and intellectual disabilities, are especially
vulnerable to breaches of human rights and discrimination. The freedom to make choices is one of the guiding principles of the UN Convention on the Rights of Persons with Disabilities. These principles will be signed into effect when/if the Mental Capacity Bill is passed into legislation.
What does this mean for persons with acquired brain injuries?
One of the best ways to take the topic from the ‘map of the world’ to the ‘small places’ is to look at case examples. The examples cited are fictional cases, amalgams of actual cases.
John is a 27-year-old man who sustained a severe brain injury in a road traffic accident. He attended rehabilitation and was assessed as incapable of living independently at this point. He moved to a residential unit for people with acquired brain injuries. He has cognitive and executive function problems and is wheelchair dependent. He has difficulty moving around independently, though an assessment for an electric wheelchair will be done. He has a premorbid history of drug and alcohol abuse. He wants to go out to the pub regularly from the home he is in.
His family are not happy and have asked the care team to restrict his movements.
What do the care team do in this situation? The first step is to determine whether John can understand the consequences of the decisions his is making. In this case, John was assessed as being capable of thinking rationally about the consequences of his decisions. He is also capable of communicating this decision. Under the bill, a decision cannot be regarded as invalid because it would not be made by a person with ordinary prudence. In other words, it is not up to the care team to remove a person’s right to make decisions because they may be unwise. In this case the care team could look at the underlying cause of John’s alcohol abuse and work with John on the reasons and his motivation to limit alcohol intake. While John’s family’s opinions need to be taken into consideration, John still has the right to make decisions. The agency needs to facilitate John’s decisions.
Capacity and relationships
The Mental Capacity and Guardianship Bill deals with decisions pertaining to personal welfare, property and affairs. It does not deal with decisions related to adoption, sexual relations or marriage. Agencies are challenged with the task of developing a relationships and sexuality policy for themselves. Do we expect people with acquired brain injuries not to express their sexuality because we find the idea too difficult to manage? One of the common reactions to people with acquired brain injuries is to infantalise them, to assume the job of ‘looking after’ them. This can be at odds with their adult need to make relationship decisions.
Joan is a 28-year-old woman who suffered an anoxic brain injury as a result of drug use. She was not, however, a regular drug user. She has a moderate brain injury as a result. After a period of rehabilitation she moved to a residential care home for people with acquired brain injuries. She presents as impulsive and emotionally labile. Premorbidly she enjoyed an active sexual life. She did not have a steady boyfriend, but enjoyed going out and meeting people and had regular ‘one night stands’. Her social and sexual life was not out of the ordinary amongst her friends. She has asked staff that she be allowed to go out and ‘find a man’. Her family do not want her to go out at night. She has been assessed by a psychologist and shows an average insight into issues of self-protection and sexuality.
In the absence of legislation, is it most likely that Joan will be persuaded not to go out at night? Decisions about who to engage in a relationship with she made before her injury, easily and unencumbered. At this point in her life her ability to choose relationships is no longer just her own. Disempowered and removed of privacy, does Joan give up on the idea of being allowed to express her sexuality? Joan’s quality of life would be hugely affected by not being allowed to choose what relationships she wants in her life.
Frank discussions of sexuality after brain injury are rare, perhaps due to discomfort, and perhaps due to the concentration of efforts on physical and cognitive rehabilitation. Relationships form a very central part of anyone’s quality of life. Sexual inappropriateness is a common consequence of brain injury, and yet it is not often an explicit part of rehabilitation programs. Marriage and long-term relationships are hugely impacted by acquired brain injury. Issues like anorgasmia, sexual arousal difficulties, sexual self-image, and sexual preference are reported, but are rarely addressed by services. Facilitating a person in a long-term relationship or a marriage could have huge impact on their quality of life.
Capacity, acquired brain injury and day-to-day living
Going back to the ‘small places’, a person with an acquired brain injury needs frequently to relearn, or learn different ways of completing everyday tasks which make up the minutiae of their lives. The countless small decisions we are barely aware of— the ability to go for a walk, to make ourselves some tea, to not bother with bathing for one day. Rehabilitation programs often focus on the person relearning everyday skills, but what if the person does not get the opportunity to put these skills in to practice? The opportunity to act on these countless small decisions is frequently and unthinkingly removed from people with acquired brain injuries.
Sylvia is a 68-year-old woman who suffered a stroke at home. She never married and lived in her own house by herself. She had, before her stroke, an active social life. She owned a car and would independently drive to her friends and relatives. She went to mass every day and was deeply involved in church activity. After her stroke she suffers from right-sided weakness and communication problems. She is no longer able to drive. Sylvia was placed in a care-for-the.elderly facility. She now depends on the care staff to help her with everyday tasks, such as bathing, going out, money management, shopping and food preparation.
We can see in Sylvia’s case a person who made decisions in an ongoing basis. Now deprived of the ability to drive, will she be able to visit people, or be as active in the church as she used to be? While she still has capacity to make day-to-day decisions, does Sylvia get the opportunity to act on this capacity? Do the staff in the facility make these decisions, perhaps with good intentions, for her? Do people with acquired brain injuries, in these situations, get the message that they are not being taken seriously by services?
Task-focussed care relates to a model of working with people with disabilities which emphasises the completion of tasks by the care team. Person.focussed care relates to a model where the person’s decision making and self-determination is emphasised. By focussing on tasks, organisations are in danger of removing the small, quotidian decisions that a person with an acquired brain is capable of making.
Self determination is a central aspect of any quality of life construct, lower levels of self-determination lead to lower levels of quality of life. For people with acquired brain injuries the opportunity to make decisions, and mistakes, is frequently diminished. For most, self-determined decision making formed their lives before the acquisition of their brain injury. What is the impact of the curtailing of this self determination? How do people with brain injuries experience services which reduce their opportunity for decision making? We can see from the case examples cited above that services, with the best of intentions, can assume the role of decision maker for people with brain injuries. For John, Joan and Sylvia there is a sharp difference in their opportunity for self-determination before and after the acquisition of their brain injuries. Their quality of life will suffer from the sense of not being in control of their own lives. The passing of capacity legislation ought to sharpen services’ attention to supporting people to make those decisions they are capable of making.