Care NOT Killing is a UK-based alliance bringing together over 30 human rights organisations, healthcare bodies, palliative care groups, faith groups and concerned individuals.
Care NOT Killing has three key aims:
The Draft Code of Practice to the Mental Capacity Act applies to matters that impact upon our aims. As a result we wish to take this opportunity to respond to the consultation on the Draft Code of Practice.
The Draft Code of Practice notes that the Act does not define best interests – nor does it limit the factors to be considered: it just stipulates the minimum.
The criteria listed in the Act are designed to be applicable in all contexts – welfare, finance, health, etc.
Health decisions in particular need to take account of the detrimental health effects that they can cause.
The Draft Code does not adhere to even a minimum set of clearly defined criteria which should include;
a) Provision of nutrition and hydration by any reasonable, clinically appropriate means that do not cause the patient unacceptable discomfort.
b) Basic nursing care, warmth, shelter, hygiene measures and bodily comfort.
c) Provision of well managed pain relief.
The right of mentally incapacitated people to receive the same standard of care as others is rightly emphasised in 8.24. However, this point should also be stressed in section 4, for example, and not confined to the consideration of those who have made a written advance decision.
Furthermore, it should be noted that while the MCA relates to what it is permissible to do to or for an incapacitated person, there are many things that we are obliged to do for other people. Some things are obliged by statute (such as providing healthcare and state benefits), while other duties arise from personal promises, family ties or courtesy. Those relying on the MCA, which often stresses what should not be done, need to be conscious of the balancing force of obligations to help others.
Merely offering oral nutrition and hydration (para 8.24) is unacceptable. Many patients with serious mental incapacity may not have the ability or strength to ask for a drink and may not be able to swallow properly. In order to safeguard patients' best interests the provision of nutrition and hydration by any reasonable, clinically appropriate means that do not cause the patient unacceptable discomfort should be incorporated into the Draft Code of Practice.
We have serious concerns about Social Services' role as court appointed deputies. Due to their financial involvement in the care of patients in residential and nursing homes a conflict of interest may arise. This can be avoided if the Draft Code makes clear that Social Services can have no involvement as court appointed deputies.
As an alliance committed to enhancing patient care we have strong reservations about the Draft Code's provisions on advance decisions to refuse treatment.
Although it cannot be right to make an advance decision to receive a particular medical treatment, it would be perfectly reasonable for a patient to make an advance declaration to receive artificial nutrition and hydration. Since 2004 it has been the policy of the British Medical Association that “patients who lose their capacity but who have indicated in advance that they wish to receive artificial nutrition and hydration should have their wishes respected”. We welcome the statement in 4.26 that “doctors must give special consideration to written statements that ask for life-sustaining treatment” but believe that the BMA policy should be incorporated within the Draft Code. Patients should be directed to where they can get further advice on the framing of such advance statements. It should be noted that the effect of such a statement is for clarification and the reassurance of the person, as no patient should be denied the best available care when incapacitated on the grounds that they failed to make a specific request.
The Draft Code should make clear that patients may refuse any intrusive research which does not also give them a reasonable expectation of direct benefit. Patients should be given the opportunity to stipulate this in any Lasting Power of Attorney.
Section 8 of the draft dealing with lasting power of attorney should be expanded to allow space for a substantial written statement. It should also include a space to record whether another trusted person who does not have a financial interest under a testamentary will, for example a family solicitor, has a copy of the document.
We believe that the tick box approach for delegating life sustaining treatment decisions to attorneys is fraught with danger.
As soon as an illness is diagnosed that may result in a future loss of competence patients should be encouraged to agree a comprehensive care plan. By considering treatment options with the patient and, where appropriate, with family and other medical advisers we can better ensure that patients' decisions are informed, valid and applicable to the situation likely to arise. For patients who are already incompetent, the “best interests” principle must apply.
Patients are responsible for making many health care decisions, but to make them in advance in a manner which is relevant, informed, valid and applicable is no easy task. The Draft Code could make this process easier, but a tick box approach is certain to lead to misunderstandings.
For those who are incompetent, the treatment that is given should be that which is in their best interests. This concept is not adequately elucidated in the Draft Code.
The best and most enduring decisions are likely to be those made during the course of a diagnosed illness.
There are serious financial conflicts of interests built into the Act, which the Draft Code may not be able to eradicate.