What would you do if you had been given responsibility for the life of a loved one and yet were legally obliged to withhold lifesaving medical treatment? You have been made responsible for looking after the general "best interests" of someone with, for example, dementia, but the critical decision to discontinue a treatment could have been made already by the patient in a so-called "living will".
Such situations are inevitable if the draft Mental Incapacity Bill, published in late June and currently undergoing prelegislative scrutiny, becomes law in its present form. It seeks to provide a clear legal framework through which the question of "who decides" for an incapacitated individual can be answered.
The remit of the bill is wide: both mentally and physically disabled people would be covered. Patients suffering from degenerative disorders such as dementia, learning disabilities, mental illnesses such as schizophrenia, and brain injury gained as a result of accidents, would all form part of the patient population. An estimated two million people in England alone would be covered.
After 14 years of consultation - the Law Commission began looking at the issue in 1989 - patient and carer groups have welcomed the proposed legislation. The status quo is clearly unsatisfactory as there is in fact no statutory law covering mental incapacity. Announcing the start of the "Making Decisions" consultation in 1999, the then Lord Chancellor, Lord Irvine, described the law as "confusing and fragmented".
The lack of a legal framework has led to an unclear division of responsibility between patient, carer and health professional. From the patient's point of view, people lacking capacity are wrongly deemed incapable of any decision making. Capacity is seen as a "black or white" issue. Carers are left without any legal protection when making decisions taken on behalf of those they care for. And doctors and other health professionals are forced into making personal judgements as they lack any procedures to follow.
To answer these criticisms, the bill proposes mechanisms that follow two principles: first that the wishes of the incapacitated person are respected as much as possible, and second that the concept of "best interest" guides every decision made on their behalf. Though at the moment a similar system exists, an attorney is restricted to the management of financial affairs.
More controversially the bill proposes that the wishes of a person can be enforced directly through a living will - or more accurately an "advance statement". This cannot prescribe forms of treatment. The prospective patient's wishes only have legal standing when it is a refusal of "specified treatment [that] is proposed to be carried out or continued by a person providing healthcare". This includes artificial feeding.
This slightly paradoxical situation is attacked by anti-euthanasia campaigners such as Life who point to the similarity between what they call "assisted killing by planned omission" and the common law status quo since the Bland case. The fact is that for the draft bill to be consistent a person should be able to make an advance decision to specify certain treatment that they would want as well as would not. In other words a positive wish (to have a certain treatment) as well as a negative statement (to not have a treatment) would have to be admissible. The government would have to be prepared, however, to grasp the thorny question of how euthanasia should be defined (and face down the anti-euthanasia lobby at the same time).
The precise moral quandary thrown up by the bill is the question of whether an advance refusal of life saving treatment can be in the best interests of the patient. If "patient choice" really is the watch-word, then the bill must ensure that an advance statement is valid even if it seems to be against the best interests of that person. Hence the explanatory notes to the bill state that a person is "fully entitled to make [advance] decisions that would not objectively be in his own best interests".
Putting aside any absolute moral objections to the idea that withholding artifi cial feeding could be in a person's bets interests, problems could be seen to arise as to the reliability of the advance statement. A statement could be deemed unreliable if the opinion of the person had changed but the statement was not updated or if the person was not in a "sound frame of mind" when the formal statement was made.
To protect the incapacitated person from the first situation, the draft bill states that an advance decision must be first "valid" and secondly "applicable". The first allows for a decision to be overruled if "a person has acted in a way that runs clearly contrary to the advance decision". The second states that the decision will be ruled invalid if "the circumstances under which the person is placed are very different to those prevailing when his decision was made".
Both of these preconditions suggest a degree of subjective judgement in deciding whether a statement should be applicable or not. Moreover the bill is explicit in stating that there is not to be any sort of register for advance decisions which would make the validity test easier to police. This would allow for last minute changes of heart on the part of the patient. However if oral statements made by the incapacitated person are admissible, the potential for misuse is great.
The notion of "sound frame of mind" is even more troublesome. The draft bill recognises that capacity is not a black or white issue. While this is clearly the case - this creates some perplexing grey areas. It would seem that the definition of "sound mind" would be particularly open to abuse when the person has a fluctuating mental disability such as schizophrenia or depression. The safeguard of "applicability" in this case would still require the judgement of a third party, rendering void the original principle of maximising patient choice. What is perhaps needed is clear boundaries between the patient population defined as mentally ill and those deemed solely incapable. With the future shape of the draft mental health bill unclear, it is impossible to predict how the government might do this.
There is a long way to go until the bill hits the statute books, and it is safe to say there will be rigorous parliamentary debate over its merits. At least one thing is clear. In answering the question "who decides", our politicians must find a way of protecting patients' decisions from abuse whilst ensuing patient choice is upheld.
Simon Greaves is HealthAnalyst at ePolitixPlus
