Some of the most stressful challenges facing staff in residential settings relate to service users who cannot take responsible decisions unaided, as Jef Smith reports.
People who are in danger of harming themselves or others clearly cannot be permitted to act completely without constraint, and it will fall to staff to take protective action. Inevitably, this sometimes involves depriving service users of their liberty against their will.
So far, one might say, so much common sense. As usual, however, what seems like common sense is no guide to what is appropriate or legal.
The key piece of legislation in this area is the Mental Capacity Act 2005. The Act’s objective was to “empower, protect and support” people who might otherwise be exploited or oppressed, and to clarify the rights and responsibilities of those caring for them. The Deprivation of Liberty Safeguards (DoLS), to which the Act gave authority, were introduced a year later.
DoLS apply only to people living in a residential home or hospital, and are intended to protect the interests of people whose liberty may be constrained. They do this by requiring specified applications and assessments to be made, and the interests of the affected service users to be independently represented.
DoLS have always been controversial and, over recent years, have been increasingly criticised as oppressive and bureaucratic. Others, however, say that these attacks are unfair.
The Act introduced the important principle that “capacity” can only be assessed in relation to a particular decision at a specific time. It states that “a person lacks capacity in relation to a matter if at the material time he or she is unable to make a decision for himself or herself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the brain or mind”.
That probably needs to be read at least twice to get its meaning, but it is the key to why DoLS are both important and controversial.
Five fundamental principles
The specified “in relation to a matter” in the excerpt above is to make clear that an individual cannot be said to lack capacity generally or permanently. He or she may lack the capacity to make a decision at one time, but have capacity to make the same decision at another time, or be unable to make a decision regarding one matter, but be perfectly capable of making a decision about something else.
That principle — that “a person must be assumed to have capacity unless it is established that he or she lacks capacity” is the first of five fundamental principles on which the Act and DoLS are based. The other four principles are equally important:
“a person is not to be treated as unable to make a decision unless all practicable steps to help him or her to do so have been taken without success”
“a person is not to be treated as unable to make a decision merely because he or she makes an unwise decision”
“an act done, or decision made ... for or on behalf of a person who lacks capacity must be done, or made, in his or her best interests”
before any action is taken “regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive”.
The judgment that you lack capacity is only to be made as a last resort. Taking one foolish or eccentric decision — buying a dress on impulse or choosing a lousy restaurant — does not disqualify you from taking other decisions independently and, perhaps, quite wisely. If anyone does take a decision on your behalf, they have to be guided by your interests, not theirs.
In addition, the amount of restriction applied to your decision-taking — to stay in bed, to wear something others think odd — must be kept to a minimum.
In the opinion of many in the field, these worthy principles have not always been successfully put into practice, leading now to demands for the system to be radically overhauled or even totally replaced. The issue has been studied by a House of Lords Select Committee, whose March 2014 report came to some alarming conclusions, including the allegation that vulnerable people in care homes are, in some circumstances, “being kept prisoner”.
The committee found that the Act was a “visionary piece of legislation ... that marked a turning point in the statutory rights of people who may lack capacity ... with the potential to transform the lives of many”, but it immediately added “implementation has not met the expectations that it rightly raised”.
The Act, it concluded, “has suffered from a lack of awareness and a lack of understanding”, and staff training in the operation of DoLS, or rather the lack of training, clearly is a serious issue. The result has been that “the empowering ethos has not been delivered. The rights conferred by the Act have not been realised.”
Chaired by Lord Hardie, a senior Scottish judge who now sits as a cross-bencher, the membership consisted of representatives from the three main political parties. The Government’s response in June 2014 was published in the names of two ministers, representing respectively the Department of Health and the Ministry of Justice. Coincidentally though, both Norman Lamb and Simon Hughes are Liberal Democrats, and speak of course for the Coalition, and both of their bosses — the Secretaries of State — are Conservatives.
Although the subject of individual liberty arouses strong feelings, not least among politicians, the issues presented by both the report and the response transcend party politics. The response carried a title that summed up these concerns eloquently: Valuing Every Voice, Respecting Every Right: Making the Case for the Mental Capacity Act.
A lack of awareness
The committee members and ministers share a concern about a general lack of awareness of the issues posed by the Act. The government document says that “every professional who works with individuals who may lack capacity should regard the responsibility to familiarise themselves with the provisions of the Act as a basic professional duty”, and adds that “professional training is a priority”. Such aspirations are all very well until one considers the range of other urgent priorities facing managers of homes and their staff.
Lack of public awareness of the Act nearly a decade after its passage, the committee and Government agree, is a pressing problem. Though there are no reliable estimates of the number of people in England who may lack capacity, plenty is known about the groups that could be at risk.
There are around 670,000 people with dementia, more than one million people with learning disabilities, and many more who at any one time may suffer from temporary mental impairment brought on by, for example, a brain injury. It is possible that as many as two-thirds of older people in care homes might sometimes be judged to lack capacity.
Given that scale, the Government’s proposal to host “a national event” sometime in 2015 hardly suggests that the problem is being treated with the urgency the House of Lords would like to see.
Mental Capacity Advisory Board
Another awareness-raising initiative proposed by the committee, the creation of a new, independently chaired Mental Capacity Advisory Board, got a similarly lukewarm welcome from ministers, who promised only to “consider the case”. Such a board, in the view of its advocates, would act as a forum for gathering views on MCA issues and advise the Government on priorities for action. Instead, rather vaguely, “a comprehensive approach to promoting implementation” is promised, in conjunction with a range of partners.
The succeeding paragraph mentions Health Education England, the Royal College of General Practitioners, the Association of Adult Directors of Social Care, and the Care Quality Commission. All of these are important bodies, but care providers are, significantly, absent from the list.
As regards the much-criticised DoLS, the Government has merely undertaken to ask the Law Commission to “consider any improvements that might be made” and will “commission a revision of the current standard forms”. This does not sound anything like the decisive action the committee called for.
The House of Lords was not alone in expressing concern. Dan Scorer, head of policy and public affairs at Mencap, was not being overdramatic when he claimed recently: “Too often people with a learning disability are being denied the care or treatment they need.” As an example of the abuse of the law tolerated, he referred to families who are often not involved in best-interest decisions about a service user’s health, despite the Act specifically requiring them to be consulted.
Clearly there is unfinished business here. Just about everyone welcomed the Act when it was passed as a landmark in embodying in law the welfare of some of our society’s most vulnerable people. The issues are complex and frankly sometimes hard to follow, but that is because we are grappling with the issue of protecting fundamental rights in situations that are full of conflicting interests and priorities. Not an excuse for inaction.
In a helpful guide to the working of the Act, the Social Care Institute for Excellence quotes several case studies.
There is a man with learning disabilities and Prader-Willi syndrome who, despite being dangerously overweight, seems to be incapable of controlling his eating patterns, even stealing food in the residential home in which he lives. A woman with an acquired brain injury needs an operation on her foot and has to be sedated to stop her removing the dressing and picking at the wound. A man with dementia living in a nursing home becomes very agitated and repeatedly tries to leave the building, once having been found alone on a main road.
Such situations will be familiar to almost anyone working in residential care. These staff deserve every possible support, not only from their managers, but from the national policy makers who frame the legal environment in which they have to operate.
Last reviewed 29 August 2014