Who decides on medical treatment, the Legal View

Questions and Answers between Dr Anthony Cole Chairman of the Medical Ethics Alliance and Dr John Duddington

Questions put by Dr Anthony Cole  J P  F R C P E  foundation F R C P C H, Chairman of the Medical Ethics Alliance

Answers from Dr John Duddington LL.B,  LL. M, Ph. D, Editor of “Law and Justice,”  Chairman Worcestershire Medico Legal Society,  Barrister                            

Question

How much “capacity” does a patient require to make a decision ?  What does the Mental Capacity Act (MCA) 2005 say.?

Answer

The first and most fundamental point is that under s.1(2)  of the MCA  a  person must be assumed to have capacity unless it is established that he/she  lacks capacity: so it is for the doctor etc. to show that the patient (P)  lacks capacity. Moreover by s.1(3) a person is not to be treated as unable to make a decision unless all practicable steps to help him/her  to do so have been taken without success.

By  s..2 (1) of the MCA  a person lacks capacity in relation to a matter if at the material time he/she  is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.

So there are two tests:

(a) Functional : does P. lack capacity?

(b) Diagnostic : is this because of an impairment or disturbance in the functioning of the brain?

Question

Day to day decisions in healthcare  are based on “best interests”.  What does that mean in law ? Does Scotland have a different law ?

Answer     

Yes, a discussion of capacity then takes us to the best interests test which will be used where a patient lacks capacity.

The ‘best interest test’ is not exactly defined in law but s.4 of the MCA sets out a number of considerations which those assessing the best interests of P must have regard to. It is vital to read s.4 in full but here are some particular points.

 S. 4(1) provides that the person making the decision must not do so only on the basis of P’s age. Other considerations are set out in s.4(6) which provides that the person making the decision must consider, so far as is reasonably ascertainable:

(a)the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),

(b)the beliefs and values that would be likely to influence his decision if he had capacity, and

(c)the other factors that he would be likely to consider if he were able to do so.

Then s.4(7) provides that the views of the following must be taken into account ,provided that   it is practicable and appropriate to consult them,—

(a)anyone named by the person as someone to be consulted on the matter in question or on matters of that kind,

(b)anyone engaged in caring for the person or interested in his welfare,

(c)any donee of a lasting power of attorney granted by the person, and

(d)any deputy appointed for the person by the court.

The end result is that it is generally never right for any one person to decide what the best interests of another are. This is reinforced by s.1(4) ( which provides that a person is not to be treated as unable to make a decision merely because he makes an unwise decision. We have the right to make decisions which others may consider unwise! A paternalistic approach here is wrong.

The Mental Capacity Act does not apply to Scotland where the legislation is the Adults with Incapacity (Scotland) Act 2000. It is interesting that the test is different:  s.1 (2) provides that

‘There shall be no intervention in the affairs of an adult unless the person responsible for authorising or effecting the intervention is satisfied that the intervention will benefit the adult and that such benefit cannot reasonably be achieved without the intervention’. In effect the test is what would be “what would be of benefit” to the patient,

Question:

What is the legal position of next of kin ?

Answer 

As mentioned above, under s.4(7) of the MCA  consideration must be given to the views of those caring for the person but this is not equivalent to the persons own decision. Relatives and carers views can of course be sought in a best interests meeting but do not carry the same weight as those of the patient and next of kin and others caring for the patient do not have a veto over best interests decisions..

However, it must be emphasieed that they do have a right to have their views made known provided  it is practicable and appropriate to consult them. So if P’s wife visited him daily then there would be no reason not to consult her and take her views into account. On the other hand if a P’s relatives could not be traced after every reasonable effort had been made to find them then one could of course go ahead without consulting them. Clearly time could be  a major factor here.

Question

What is the position of attorneys ?

Answer

An attorney is a person who has been officially designated in a power of attorney duly registered with the Office of the Public Guardian . There are two types of Lasting Power of Attorney:   

  • Health and Welfare
  • Property and Financial Affairs

You can make both or only one

The relevant one here is of course Health and Welfare. The legal effect of the power is that the attorney has certain powers of decision but in cases where best interests are being discussed the attorney  has, as explained above, a right to be consulted and their views must be taken into account.

Note that S. 11 (8) of the MCA 2005 provides that a Lasting Power of Attorney  does not authorise the giving or refusing of consent to the carrying out or continuation of life-sustaining treatment, unless the instrument (i.e. LPA) contains express provision to that effect

Section 7 of the form is important. It is optional and allows you to tell your attorneys how you would  prefer them to make decisions, or give them specific instructions which they must follow when making decisions e.g.

  • I do not want to be treated at a particular hospice – or any hospice.
  • I wish to be provided with food and water, including medically assisted nutrition and hydration and this must not be withdrawn.
  • I do not wish any notice which says that I am not to be resuscitated to be placed on my bed or in any other place. Instead I wish all decisions of this kind to be made in response to specific medical situations

Question

What is the legal status of a ResPECT Form?

Answer

These are  not legally binding. Such a form  only makes recommendations about care and treatment that might be considered in an emergency when a person’s life may be at risk. It is important to note what ResPECT stands  for:  Recommended Summary Plan for Emergency Care and Treatment. The emphasis should be on the ‘R’ : Recommended:  Not prescribed.

Question

Are advance directives legally valid ?

Answer  

Advance directives may be legally binding if the foreseen condition actually arises.. S 24 (I) MCA provides that:  An “Advance decision” means a decision made by a person (“P”), after he has reached 18 and when he has capacity to do so, that if—

(a)  at a later time and in such circumstances as he may specify, a specified treatment is proposed to be carried out or continued by a person providing health care for him, and

(b)  at that time he lacks capacity to consent to the carrying out or continuation of the treatment,

In such as case  the specified treatment is not to be carried out or continued. Note that advance directives are not applicable to the giving of treatment but only the withholding of it.

If it rejects lifesaving treatment it must be signed and witnessed

Question

Does a DO NOT ATTEMPT CARDIO PULAMANORY RESUSCITATION  (DNACPR)  order require more than a tick box approach ?

Yes, D N R  (Do Not Resuscitate Orders ) need to be discussed with the patient and preferably with the family before being made by healthcare professionals. Lack of consultation is common but is also generally unlawful. In Tracey, R (on the application of) v Cambridge University Hospitals NHS Foundation Trust & Or (2014)  the  Court of Appeal held  that under Article 8 of the European Convention on Human Rights (respect for private and family life) a hospital had violated a patient’s right to be consulted before a DNACPR notice was put in her notes. The patient had in fact expressed strong views about her wish to be involved in decisions regarding her treatment. The court held that ‘a clinician has a duty’ to consult the patient in relation to DNACPR ‘unless he or she thinks that the patient will be distressed by being consulted and that that distress might cause the patient harm’. This case is not as well known as it should be.

It should also be noted that a DNACPR is not the same as a  ReSPECT form as a DNACPR is an advanced decision not to attempt CPR when a named patient’s heart stops beating based on the illnesses or injuries the patient has and treatments that have already been given.

Question

What is the Court of Protection ?

Answer   

The Court of Protection derives from the ancient power of the Crown to protect people who lacked  capacity.. It has a similar status to The High Court. 

Thus it is responsible for e.g.

  • deciding whether someone has the mental capacity to make a particular decision for themselves
  • appointing deputies to make ongoing decisions for people who lack mental capacity
  • giving people permission to make one-off decisions on behalf of someone else who lacks mental capacity

Question:

One last point: can you single out one particular issue in the field of medical law and  ethics which urgently needs addressing?

Yes. It  is the relationship between medical evidence and the actual decision arrived at by the court. It is not for the court to arrive at its own decision on medical matters but for that decision must be informed by the medical evidence. I feel that on occasions the courts may stray over the line here and this is not helped by the fact that  the wording of s.2(1) of the MCA does not require a formal diagnosis of an impaired mind or brain. All that it requires,  as we saw above, is  an impairment of, or a disturbance in the functioning of, the mind or brain. This was made clear in North Bristol NHS Trust v R (2023) EWCOP 5 where it was held that ‘no formal medical diagnosis is required for the purposes of the statutory test’.

The effect is that if the court finds some impairment which has an impact on a person’s ability to take a decision then that can be enough. We saw this in the recent case of NHS Trust v ST (2023) EWCOP 40. ST was 19 and living a normal life preparing for her ‘A’ levels  when she contracted a rare form of mitochondrial depletion syndrome.  Although there is no known treatment for it, clinical trials of experimental forms of nucleoside treatment are being developed in Canada and the US. ST wanted to live long enough to find out if she could enter one of these trials. 

There was conflicting evidence from the doctors about her capacity but in a long judgement the judge took ST’s belief in the possibility of her surviving her illness and in receiving this experimental treatment to be signs that she refused to believe the information given by her doctors. As she did not accept their prognosis, her ability to use the information given to her in making decisions was taken to be impaired. The nub of the decision was this:

I find on the balance of probabilities that ST’s complete inability to accept the medical reality of her position, or to contemplate the possibility that her doctors may be giving her accurate information, is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain’

I find this decision very troubling as ST was able to express a wish and there was no consensus amongst the doctors who had examined her that she lacked capacity. Another Rubicon has been crossed. In the Bland case thirty years ago the courts allowed treatment to be withdrawn from Tony Bland who was thus allowed by the courts was  to die. The only mitigating factor was that he was not conscious and so could not express  a view. Here ST, unlike Tony Bland, had clearly expressed a wish that treatment should continue yet the courts refused and she has now died. In the longer term s 2(1) of the MCA needs to be reviewed and in the shorter term, although there can be no actual appeal in this case, the higher courts need to review this judgement urgently.