LADY BLACK: (with whom
Lady Hale, Lord Mance, Lord Wilson and Lord Hodge agree)
1.
The question that arises in this appeal is whether a court order must
always be obtained before clinically assisted nutrition and hydration, which is
keeping alive a person with a prolonged disorder of consciousness, can be
withdrawn, or whether, in some circumstances, this can occur without court
involvement.
Terminology
2.
The term “prolonged disorder of consciousness” encompasses both a
permanent vegetative state (sometimes referred to as a persistent vegetative
state, and often shortened to “PVS”) and a minimally conscious state (or
“MCS”). “Prolonged disorder of consciousness” is commonly shortened to “PDOC”
and that practice is followed in this judgment. Clinically assisted nutrition
and hydration is now referred to as “CANH”, although it has been variously
described in the past.
The facts
3.
Mr Y was an active man in his fifties when, in June 2017, he suffered a
cardiac arrest which resulted in severe cerebral hypoxia and extensive brain
damage. He never regained consciousness following the cardiac arrest. He
required CANH, provided by means of a percutaneous endoscopic gastrostomy, to
keep him alive. The month after his cardiac arrest, Mr Y was admitted to the
regional hyper-acute rehabilitation unit under the control of the first
respondent NHS Trust so that his level of awareness could be assessed. In late
September, his treating physician concluded that he was suffering from PDOC and
that even if he were to regain consciousness, he would have profound cognitive
and physical disability, remaining dependent on others to care for him for the
rest of his life. A second opinion was obtained in October, from a consultant
and professor in Neurological Rehabilitation, who considered that Mr Y was in a
vegetative state and that there was no prospect of improvement. Mrs Y and their
children believed that he would not wish to be kept alive given the doctors’
views about his prognosis. The clinical team and the family agreed that it
would be in Mr Y’s best interests for CANH to be withdrawn, which would result
in his death within two to three weeks.
4.
On 1 November 2017, the NHS Trust issued an application in the Queen’s
Bench Division of the High Court for a declaration (1) that it was not
mandatory to seek the court’s approval for the withdrawal of CANH from a
patient with PDOC when the clinical team and the patient’s family were agreed
that it was not in the patient’s best interests that he continue to receive
that treatment, and (2) that no civil or criminal liability would result if
CANH were to be withdrawn. At a directions hearing on 3 November, Fraser J invited
the Official Solicitor to act as Mr Y’s litigation friend in the proceedings
but, rather than adjourning the case for a hearing in the Court of Protection
as the Official Solicitor sought, he ordered that the final hearing be
expedited and listed before O’Farrell J in the Queen’s Bench Division on 10
November.
5.
On 10 November, O’Farrell J [2017] EWHC 2866 (QB) refused the Official
Solicitor’s renewed application for the case to be transferred to the Court of
Protection. She considered that it would have been appropriate to transfer the
case if the court were being asked to determine whether the withdrawal of
treatment was in Mr Y’s best interests, but that, in fact, the issue she had to
determine was a purely legal issue. She concluded that it was not established
that there was any common law principle that all cases concerning the withdrawal
of CANH from a person who lacks capacity had to be sanctioned by the court. In
her view, at para 52, “where the clinicians have followed the Mental Capacity
Act and good medical practice, there is no dispute with the family of the
person who lacks capacity or others interested in his welfare, and no other
doubts or concerns have been identified, there is no requirement to bring the
matter before the court.” Such was the situation in Mr Y’s case, she
considered, and accordingly she granted the following declaration:
“It is not mandatory to bring
before the court the withdrawal of CANH from Mr Y who
has a prolonged disorder of consciousness in circumstances where the clinical
team and Mr Y’s family are agreed that it is not in his best interests that he
continues to receive that treatment.”
6.
The judge granted the Official Solicitor permission to appeal and
certified the case, pursuant to section 12 of the Administration of Justice Act
1969, as appropriate for an appeal directly to the Supreme Court.
7.
In case the result of the appeal was that proceedings should be brought
in the Court of Protection, the judge gave directions so that any such
proceedings could progress without delay. So it was that the Official Solicitor
obtained a further expert report, from a different neuro rehabilitation
consultant. However, although CANH had been continued pending the appeal, on 22
December 2017 Mr Y died, having developed acute respiratory sepsis. The expert
instructed by the Official Solicitor could only base his report upon
documentation, including Mr Y’s medical records. In the report, he referred to
the difficulty in diagnosing vegetative and minimally conscious states, and
gave his opinion that, had Mr Y survived, further assessments, over a longer
period of time, would have been required in order to reach a reliable
conclusion that he was in a permanent vegetative state.
8.
Notwithstanding that, in view of Mr Y’s death, the proceedings could no
longer serve any purpose for him and his family, this court determined that the
appeal should go ahead, because of the general importance of the issues raised
by the case. Accordingly, the court has received full argument from Mr Gordon QC
and Ms Paterson for the Official Solicitor, and Mr Sachdeva QC and Ms Dobson
for the first two respondents (the NHS Trust which manages the regional hyper-acute rehabilitation unit at which Mr Y
was a patient until he was discharged to a nursing home and the Clinical
Commissioning Group which funded the nursing home).
Written submissions were permitted from the four intervenors. Mrs Y
understandably felt unable to participate in the proceedings at what is an
exceptionally sad and difficult time for her and her family.
The opposing arguments in brief summary
9.
I will look at the Official Solicitor’s case in detail later, but it may
help to introduce the issues now by means of the briefest of summaries. The
Official Solicitor submits that, in every case, court approval must be sought
before CANH can be withdrawn from a person with PDOC, thus ensuring that the
patient’s vulnerable position is properly safeguarded by representation through
the Official Solicitor, who can obtain independent expert medical reports about
his condition and prognosis, and make submissions to the court on his behalf if
appropriate. The Official Solicitor derives this requirement essentially from
the common law and/or the European Convention on Human Rights (ECHR), in
particular article 2 and article 6. In his submission, his position finds
support in the Mental Capacity Act Code of Practice, issued on 23 April 2007
pursuant to section 42(1) of the Mental Capacity Act 2005 (“MCA 2005”). He
submits that it is irrelevant that neither the MCA 2005 nor the Court of
Protection Rules specifically impose the requirement for which he contends.
10.
The first and second respondents disagree, submitting that neither the
common law nor the ECHR imposes a universal requirement to obtain court
approval prior to the withdrawal of CANH.
The case law preceding the MCA 2005
11.
The MCA 2005 was a watershed in the law relating to people who lack
capacity. Before the Act, questions relating to the management of the property
and affairs of adults who did not have capacity to make their own decisions,
were dealt with in the old style Court of Protection, and questions relating to
the care and welfare of such adults were resolved under the inherent
jurisdiction of the High Court. The MCA 2005 established a new regime with,
amongst other things, a new Court of Protection which has jurisdiction in
relation to both property matters and issues relating to personal care.
Nevertheless, an examination of the common law in relation to the treatment of
patients such as Mr Y must commence with the pre-MCA 2005 cases, and I turn
first to two centrally important House of Lords decisions, In re F (Mental
Patient: Sterilisation) [1990] 2 AC 1 and Airedale NHS Trust v Bland [1993] AC 789.
12.
In In re F (Mental Patient: Sterilisation), the House of
Lords considered whether the court had jurisdiction to grant a declaration that
it would not be unlawful for a sterilisation operation to be carried out on a
woman who, because of mental incapacity, was unable to consent to the operation
herself. Although not concerned with precisely the sort of life and death
decision that is involved in the present litigation, the decision is relevant
because their Lordships were required to determine a sensitive and difficult
question relating to medical treatment of a mentally incapacitated adult. They
determined that the court could, under its inherent jurisdiction, make a
declaration that the proposed operation was in the patient’s best interests and
therefore lawful. They also held that where the procedure was intended to
prevent pregnancy rather than for the purpose of treating a disease, although
not necessary to establish the lawfulness of the operation, it was highly
desirable, as a matter of good practice, that a declaration be obtained before
the operation took place.
13.
The starting point for the reasoning was the established common law
position that “a doctor cannot lawfully operate on adult patients of sound
mind, or give them any other treatment involving the application of physical
force … without their consent”, and if he were to do so, he would commit the
tort of trespass to the person (p 55), but that, in the case of a patient who
lacked the capacity to consent to treatment, a doctor could lawfully operate or
give other treatment provided that it was in the best interests of the patient.
14.
There was a range of views as to whether, with an operation such as the
proposed sterilisation operation, it was desirable/necessary to obtain a
declaration from the court that the procedure was in the patient’s best
interests. All were in favour of a declaration being obtained but, for the most
part, put the matter on the basis of good practice, rather than finding it to
be a legal requirement that such a declaration first be obtained.
15.
There was fairly general agreement with the approach of Lord Brandon of
Oakbrook. At p 56, he identified six special features of the particular operation
which were influential in his view that, whilst the lawfulness of the treatment
did not depend upon the court’s approval and it was not therefore strictly
necessary as a matter of law to seek it, the involvement of the court was
“highly desirable as a matter of good practice”. The six features were:
“first, the operation will in most
cases be irreversible; secondly, by reason of the general irreversibility of
the operation, the almost certain result of it will be to deprive the woman
concerned of what is widely, and as I think rightly, regarded as one of the
fundamental rights of a woman, namely, the right to bear children; thirdly, the
deprivation of that right gives rise to moral and emotional considerations to
which many people attach great importance; fourthly, if the question whether
the operation is in the best interests of the woman is left to be decided
without the involvement of the court, there may be a greater risk of it being
decided wrongly, or at least of it being thought to have been decided wrongly;
fifthly, if there is no involvement of the court, there is a risk of the
operation being carried out for improper reasons or with improper motives; and,
sixthly, involvement of the court in the decision to operate, if that is the
decision reached, should serve to protect the doctor or doctors who perform the
operation, and any others who may be concerned in it, from subsequent adverse
criticisms or claims.”
16.
Lord Goff of Chieveley expressed his own view (p 79) that, as a matter
of practice, the operation should not be performed “without first obtaining the
opinion of the court that the operation is, in the circumstances, in the best
interests of the person concerned, by seeking a declaration that the operation
is lawful.” In his opinion, the court’s “guidance should be sought in order to
obtain an independent, objective and authoritative view on the lawfulness of
the procedure in the particular circumstances of the relevant case, after a
hearing at which it can be ensured that there is independent representation on
behalf of the person upon whom it is proposed to perform the operation.”
17.
Lord Griffiths would have been minded to make it a legal requirement to
obtain the sanction of the High Court in all cases, and considered that the
common law could be adapted to introduce such a requirement. However, he
recognised that he would be “making new law”, and that the other members of the
House considered that it was not open to them to take that course. He therefore
accepted what Lord Brandon had proposed, “but as second best” (pp 70 to 71).
18.
Airedale NHS Trust v Bland [1993] AC 789 concerned a man who had been
left in a persistent vegetative state after being injured in the Hillsborough
disaster. He could see, hear, and feel nothing and could not communicate in any
way. There was no prospect whatever that he would make any recovery, but if he
continued to have the medical care that he was receiving, there was every
likelihood that he would maintain his present state of existence for many years
to come. Over three years after the accident, the family and the patient’s
doctors having formed the view that, in these circumstances, it was appropriate
to stop prolonging his life by artificial means, an application was made by the
hospital authority for declarations that the measures keeping him alive,
including artificial nutrition and hydration, could lawfully be discontinued,
which would result in his death. The House of Lords held that the declarations
could and should be granted, explaining why in a series of thoughtful speeches
considering the moral and legal aspects of the issue.
19.
It is important to set the decision in context. Recent developments in
medical technology, including the development of life support systems, had made
it possible for patients who would otherwise have died to survive. As Lord
Browne-Wilkinson said (p 878C et seq), those recent developments had
fundamentally affected previous certainties about what was life and what was
death, and meant that the time and manner of someone’s death might no longer be
dictated by nature but might instead be determined by a human decision. Wholly
new ethical and social problems had been raised by the developments, and
society was not of one mind about them. It was not a foregone conclusion that
the withdrawal of artificial life support measures could be tolerated at all by
the criminal and civil law, and the decision to endorse the declarations that
had been granted by the President of the Family Division was only arrived at
after an extensive review of the law, and then only on a narrow basis tied
firmly to the facts of the case.
20.
Their Lordships were at pains to emphasise that the case was an extreme
one, it having been overwhelmingly established that the patient was, and would
remain, insensate. They were conscious that there would be cases in which the
facts were less extreme and the issues, legal and ethical, even more difficult.
They did not seek, in their decision, to provide a set of universal principles,
dictating the answers in all other cases, and there was acknowledgment that
some of the issues arising may more properly be for Parliament to determine. A
sense of the delicacy with which the House was proceeding is conveyed by Lord
Mustill’s observation that “[e]very step forward requires the greatest caution”
(p 899F).
21.
In these circumstances, it is not at all surprising that their Lordships
held that, for the time being, the guidance of the court should be sought
before treatment and care of a patient were discontinued. Given the central
importance that Mr Gordon attaches to what they said about this, the relevant
passages will need to be cited in full in due course, but, before doing that,
it is appropriate to underline the following three points of importance that
are found in the speeches and have relevance not only to the decision in the Bland
case, but also to subsequent decisions, including the present one:
i)
As has already been seen from In re F (Mental Patient: Sterilisation)
(supra), it is unlawful to administer medical treatment to an adult who is
conscious and of sound mind, without his consent; to do so is both a tort and
the crime of battery. Such an adult is at liberty to decline treatment even if
that will result in his death, and the same applies where a person, in
anticipation of entering into a condition such as PVS, has given clear
instructions that in such an event he is not to be given medical care,
including artificial feeding, designed to keep him alive.
ii)
Where a person, due to accident or some other cause, becomes unconscious
and thus unable to give or withhold consent, it is lawful for doctors to give
such treatment as, in their informed opinion, is in the best interests of the
patient. Where it is no longer in the best interests of the patient to provide
treatment, it may, and ultimately should, be discontinued (see, for example, p
867 of Lord Goff’s speech, with which Lord Keith of Kinkel and Lord Lowry
agreed).
iii)
The argument that artificial feeding (in that case by nasogastric tube)
was not medical treatment at all, but indistinguishable from normal feeding,
was rejected. Regard had to be had to the whole regime which was keeping the
patient alive, and in any event a medical technique was involved in the feeding.
22.
I come now to look in more depth at what their Lordships had to say in
the Bland case when explaining their position in relation to declaratory
relief. It is useful to start with their recognition that the courts and the
medical profession were working together in addressing the new situation that
had arisen as a result of scientific advances. The medical profession had
already been working on the issue and there was available a Discussion Paper
on Treatment of Patients in Persistent Vegetative State, issued in
September 1992 by the Medical Ethics Committee of the British Medical
Association. On the basis of it, at p 870, Lord Goff paid tribute to the
evident care with which the topic was being considered by the medical
profession. In a passage which remains relevant today, he commented as follows
on the respective roles of doctors and judges in life and death cases (p 871):
“I also feel that those who are
concerned that a matter of life and death, such as is involved in a decision to
withhold life support in case of this kind, should be left to the doctors,
would do well to study this paper. The truth is that, in the course of their
work, doctors frequently have to make decisions which may affect the continued
survival of their patients, and are in reality far more experienced in matters
of this kind than are the judges. It is nevertheless the function of the judges
to state the legal principles upon which the lawfulness of the actions of
doctors depend; but in the end the decisions to be made in individual cases
must rest with the doctors themselves. In these circumstances, what is required
is a sensitive understanding by both the judges and the doctors of each other's
respective functions, and in particular a determination by the judges not
merely to understand the problems facing the medical profession in cases of
this kind, but also to regard their professional standards with respect. Mutual
understanding between the doctors and the judges is the best way to ensure the
evolution of a sensitive and sensible legal framework for the treatment and
care of patients, with a sound ethical base, in the interest of the patients
themselves. This is a topic to which I will return at the end of this opinion,
when I come to consider the extent to which the view of the court should be
sought, as a matter of practice, in cases such as the present.”
23.
At p 873, Lord Goff did return to the topic, saying:
“I turn finally to the extent to
which doctors should, as a matter of practice, seek the guidance of the court,
by way of an application for declaratory relief, before withholding
life-prolonging treatment from a PVS patient. The President considered that the
opinion of the court should be sought in all cases similar to the present. In
the Court of Appeal, Sir Thomas Bingham MR expressed his agreement with Sir
Stephen Brown P in the following words, ante, pp 815-816:
‘This was in my respectful view a
wise ruling, directed to the protection of patients, the protection of doctors,
the reassurance of patients’ families and the reassurance of the public. The
practice proposed seems to me desirable. It may very well be that with the
passage of time a body of experience and practice will build up which will
obviate the need for application in every case, but for the time being I am satisfied
that the practice which the President described should be followed.’
Before the Appellate Committee,
this view was supported both by Mr Munby, for the Official Solicitor, and by Mr
Lester, as amicus curiae. For the respondents, Mr Francis suggested that an
adequate safeguard would be provided if reference to the court was required in
certain specific cases, ie, (1) where there was known to be a medical
disagreement as to the diagnosis or prognosis, and (2) problems had arisen with
the patient’s relatives - disagreement by the next of kin with the medical
recommendation; actual or apparent conflict of interest between the next of kin
and the patient; dispute between members of the patient’s family; or absence of
any next of kin to give their consent. There is, I consider, much to be said
for the view that an application to the court will not be needed in every case,
but only in particular circumstances, such as those suggested by Mr Francis. In
this connection I was impressed not only by the care being taken by the Medical
Ethics Committee to provide guidance to the profession, but also by information
given to the Appellate Committee about the substantial number of PVS patients
in the country, and the very considerable cost of obtaining guidance from the court
in cases such as the present. However, in my opinion this is a matter which
would be better kept under review by the President of the Family Division than
resolved now by your Lordships’ House. I understand that a similar review is
being undertaken in cases concerned with the sterilisation of adult women of
unsound mind, with a consequent relaxation of the practice relating to
applications to the court in such cases. For my part, I would therefore leave
the matter as proposed by the Master of the Rolls; but I wish to express the
hope that the President of the Family Division, who will no doubt be kept well
informed about developments in this field, will soon feel able to relax the
present requirement so as to limit applications for declarations to those cases
in which there is a special need for the procedure to be invoked.”
24.
Lord Keith said (p 859):
“The decision whether or not the
continued treatment and care of a PVS patient confers any benefit on him is
essentially one for the practitioners in charge of his case. The question is
whether any decision that it does not and that the treatment and care
should therefore be discontinued should as a matter of routine be brought
before the Family Division for endorsement or the reverse. The view taken by
the President of the Family Division and the Court of Appeal was that it
should, at least for the time being and until a body of experience and practice
has been built up which might obviate the need for application in every case.
As Sir Thomas Bingham MR said, this would be in the interests of the protection
of patients, the protection of doctors, the reassurance of the patients’
families and the reassurance of the public. I respectfully agree that these
considerations render desirable the practice of application.”
25.
Lord Lowry said (p 875):
“Procedurally I can see no present
alternative to an application to the court such as that made in the present
case. This view is reinforced for me when I reflect, against the background of
your Lordships’ conclusions of law, that, in the absence of an application, the
doctor who proposes the cessation of life-supporting care and treatment on the
ground that their continuance would not be in the patient’s best interests will
have reached that conclusion himself and will be judge in his own cause unless
and until his chosen course of action is challenged in criminal or civil
proceedings. A practical alternative may, however, be evolved through the
practice of the Family Division and with the help of the Medical Ethics
Committee, which has already devoted so much thought to the problem, and
possibly of Parliament through legislation.”
26.
Lord Browne-Wilkinson said (p 885):
“I am very conscious that I have
reached my conclusions on narrow, legalistic, grounds which provide no satisfactory
basis for the decision of cases which will arise in the future where the facts
are not identical. I must again emphasise that this is an extreme case where it
can be overwhelmingly proved that the patient is and will remain insensate: he
neither feels pain from treatment nor will feel pain in dying and has no
prospect of any medical care improving his condition. Unless, as I very much
hope, Parliament reviews the law, the courts will be faced with cases where the
chances of improvement are slight, or the patient has very slight sensate
awareness. I express no view on what should be the answer in such
circumstances: my decision does not cover such a case. I therefore consider
that, for the foreseeable future, doctors would be well advised in each case to
apply to the court for a declaration as to the legality of any proposed
discontinuance of life support where there has been no valid consent by or on
behalf of the patient to such discontinuance.”
27.
Lord Mustill did not say anything specifically on the topic, but he
spoke of his “profound misgivings about almost every aspect of this case” (p
899), and, as the comment that I have already quoted above shows, he urged that
matters should proceed with the greatest caution.
28.
The practice of seeking declarations as to the lawfulness of medical
treatment became firmly established in the years after In re F and the Bland
case, as can be seen from the comment of Hale J, as Baroness Hale then was,
in In re S (Hospital Patient: Court’s Jurisdiction) [1995] Fam 26, that
it “has been followed in many cases” (p 31E).
29.
The next case which needs to be considered is R (Burke) v General
Medical Council (Official Solicitor and others intervening) [2006] QB 273.
There, the court was called upon to determine issues in relation to a patient
who was competent but suffering from a congenital degenerative brain condition.
In contrast to the Bland case, the litigation was not brought in order
to obtain the court’s sanction for treatment being withdrawn, but in order to
ensure that it would not be withdrawn. Nevertheless, the decision covers ground
which is of relevance to the present issue.
30.
The patient wished to ensure that the artificial nutrition and hydration
that he would need as his degenerative condition progressed would not be
withheld by the medical practitioners responsible for his care. He sought
judicial review of the General Medical Council’s 2002 guidance, Withholding
and Withdrawing Life-prolonging Treatments: Good Practice in Decision-making,
on the basis that it was incompatible with his rights at common law and under
the ECHR in, inter alia, failing to spell out a legal requirement to obtain
prior judicial sanction for the withdrawal of artificial nutrition and
hydration. The Court of Appeal considered the principles applicable in such
circumstances and found the guidance compatible with them. Giving the judgment
of the court, the Master of the Rolls, Lord Phillips of Worth Matravers,
considered whether there was in fact a legal requirement to obtain court
authorisation before withdrawing artificial nutrition and hydration, as Munby J
had determined that there was, in certain circumstances. The Court of Appeal
did not agree that such a requirement existed. Summarising the legal position, the
Master of the Rolls said (para 71):
“We asked Mr Gordon to explain the
nature of the duty to seek the authorisation of the court and he was not able
to give us a coherent explanation. So far as the criminal law is concerned, the
court has no power to authorise that which would otherwise be unlawful: see,
for instance, the observation of Lord Lowry in Bland’s case [1993] AC 789, 875H. Nor can the court render unlawful that which would otherwise be
lawful. The same is true in relation to a possible infringement of civil law.
In Bland’s case the House of Lords recommended that, as a matter of
good practice, reference should be made to the Family Court before
withdrawing ANH from a patient in a PVS, until a body of experience and
practice had built up. Plainly there will be occasions in which it will be
advisable for a doctor to seek
the court’s approval before withdrawing ANH in other circumstances, but what
justification is there for postulating that he will be under a legal duty so to
do?” [Original emphasis]
31.
Having considered, but rejected, the possibility that the Human Rights
Act 1998 and the decision of the European Court of Human Rights (“the ECtHR”)
in Glass v United Kingdom [2004] 1 FLR 1019 had converted what was only
a requirement of good practice into a legal requirement, the court said (para
80):
“The true position is that the
court does not ‘authorise’ treatment that would otherwise be unlawful. The
court makes a declaration as to whether or not proposed treatment, or the
withdrawal of treatment, will be lawful. Good practice may require medical
practitioners to seek such a declaration where the legality of proposed
treatment is in doubt. This is not, however, something that they are required to do as a
matter of law.”
32.
Mr Burke made a complaint to the ECtHR under articles 2, 3, 8 and 14 of
the ECHR (Burke v United Kingdom (Application No 19807/0) 11 July 2006).
It was rejected as manifestly ill-founded.
33.
The ECtHR expressed itself satisfied that “the presumption of domestic
law is strongly in favour of prolonging life where possible, which accords with
the spirit of the Convention” (p 8 of the decision). Dealing specifically with
the argument that there was insufficient protection for someone in Mr Burke’s
position, because a doctor might reach a decision to withdraw artificial
nutrition and hydration without being obliged to obtain approval from the
court, the court saw no problem with a process which involved taking into
account the patient’s previously expressed wishes and those of people close to
him, and the opinions of medical personnel, and approaching a court only “if
there was any conflict or doubt as to the applicant’s best interests”. It
appears to have been content to endorse what the Court of Appeal said:
“the Court would refer to the
Court of Appeal’s explanation that the courts do not as such authorise medical
actions but merely declare whether a proposed action is lawful. A doctor, fully
subject to the sanctions of criminal and civil law, is only therefore
recommended to obtain legal advice, in addition to proper supporting medical
opinion, where a step is controversial in some way. Any more stringent legal
duty would be prescriptively burdensome - doctors, and emergency ward staff in
particular, would be constantly in court - and would not necessarily entail any
greater protection.”
The Mental Capacity Act 2005
34.
Since 2007, the MCA 2005 has been the statutory context within which
treatment decisions are taken in relation to those who lack capacity,
essentially without input from the court, but with the possibility of an
application being made to court should the case require it. It may be helpful
briefly to review the main provisions of the Act which are relevant to the
present issue, dealing first with provisions of general application and then
coming, in para 39, to the provisions dealing with the court’s involvement and,
in para 40, to the provision requiring the Lord Chancellor to issue codes of
practice.
35.
I start with two provisions which place the best interests of the person
who lacks capacity at the heart of the process. Section 1(5) provides that an
act done, or a decision made, under the Act for or on behalf of a person who
lacks capacity must be done, or made, in his best interests. Section 4 sets out
how someone determining, for the purposes of the Act, what is in a person’s
best interests must go about the task. All the relevant circumstances must be
considered, and the steps listed in the section must be taken. They include
considering, so far as reasonably ascertainable, the person’s wishes and
feelings, and the beliefs and values that would be likely to influence his
decision if he had capacity, as well as the other factors that he would be
likely to consider if he were able to do so. Also to be taken into account are
the views of various specified people who have some responsibility for or are
interested in his welfare. There is a specific subsection, section 4(5),
dealing with a determination that relates to life-saving treatment; it provides
that in such cases, in considering whether the treatment is in the best
interests of the person concerned, the person making the determination must not
be motivated by a desire to bring about his death.
36.
Section 5 allows carers, including health professionals, to carry out
acts in connection with personal care, health care, or treatment of a person
who lacks capacity to consent. It provides a significant degree of protection
from liability, provided that the act is done in the reasonable belief that
capacity is lacking and that the act is in the patient’s best interests. If
these conditions are satisfied, no more liability is incurred than would have
been incurred if the patient had had capacity to consent and had done so.
37.
There are provisions of the Act which enable someone to cater in advance
for the possibility that he or she will, in future, lose the capacity to make
decisions about his or her own welfare. One such provision is section 9 which
deals with lasting powers of attorney, under which the donor gives the donee
authority to make decisions about the donor’s personal welfare. Such a power of
attorney is subject to the restrictions in section 11(7), and thus subject to
sections 24 to 26 of the Act (see immediately below). Although it will normally
extend to giving or refusing consent to the carrying out or continuation of a
treatment by a person providing health care for the donor, section 11(8)
provides that it will not authorise the giving or refusing of consent to the
carrying out or continuation of life-sustaining treatment, unless the
instrument contains express provision to that effect. Sections 24 to 26 deal
specifically with advance decisions to refuse treatment. They enable an adult
with capacity to decide in advance that if he later lacks capacity to consent
to the carrying out or continuation of a specified health care treatment, that
treatment is not to be carried out or continued. Such an advance decision
applies to life-sustaining treatment only if the decision is verified by a
statement from the person concerned that it is to apply even if his life is at
risk, and the decision complies with certain formalities set out in section
25(6), which essentially requires it to be written, signed and witnessed.
38.
Section 37 makes provision for a situation in which an NHS body is
proposing to provide “serious medical treatment” for a person who lacks
capacity to consent to it and there is no one, other than those engaged in
providing care or treatment for the person in a professional capacity or for
remuneration, whom it would be appropriate to consult in determining what would
be in the person’s best interests. “Serious medical treatment” means treatment
which involves providing, withholding or withdrawing “treatment of a kind
prescribed by regulations made by the appropriate authority”, which in practice
will relate to situations in which a finely balanced decision has to be taken
or what is proposed would be likely to involve serious consequences for the
patient. Before providing the treatment, the NHS body must instruct an
independent mental capacity advocate (referred to as an “IMCA”) to represent
the person, although treatment which is urgently needed can be provided even
though it has not been possible to appoint an IMCA. In providing treatment, the
NHS body has to take into account information provided or submissions made by
the IMCA.
39.
The provisions of sections 15 to 17 of the Act give the court power to
make decisions about personal welfare and to make declarations and orders in
respect of a person who lacks capacity. Section 15 deals with declarations,
including declarations as to the lawfulness or otherwise of any act which has
been or is to be done. Section 16 enables the court, by making an order, to
make personal welfare decisions for a person without capacity, and, by section
17, the court’s power in this regard extends to giving or refusing consent to
the carrying out or continuation of a treatment by a person providing health
care for the patient. Section 16(3) makes it clear that the court’s powers
under section 16 are subject to the provisions of the Act and, in particular,
to section 1 and to section 4. What governs the court’s decision about any
matter concerning the patient’s personal welfare is therefore the patient’s
best interests.
40.
Section 42 provides for the Lord Chancellor to prepare and issue codes
of practice on various subjects. Before preparing a code, the Lord Chancellor
has duties to consult, and a code may not be issued unless it has been laid
before both Houses of Parliament in accordance with section 43(2). Section
42(4) imposes a duty on someone acting in a professional capacity in relation
to a person who lacks capacity to have regard to any relevant code. Section
42(5) provides that if it appears to a court conducting any criminal or civil
proceedings that a provision of a code, or a failure to comply with a code, is
relevant to a question arising in the proceedings, the provision or failure
must be taken into account in deciding the question.
41.
Before leaving this overview of the provisions of the 2005 Act, it is
worth noting a provision which is not to be found amongst them. The Law
Commission had recommended (see Law Commission Report No 231 on Mental
Incapacity, published in 1995, particularly para 6.21) that the new statute
should provide that the discontinuance of artificial sustenance to an
unconscious patient with no activity in the cerebral cortex and no prospect of
recovery should in every case require the prior approval of the court, unless
an attorney or court-appointed manager had express authority to make the
decision, albeit that flexibility for the future was to be incorporated by providing
that the Secretary of State could, by order, replace the need for court
approval with a requirement for a certificate from an independent medical
practitioner duly appointed for that purpose. As the Explanatory Notes to the
2005 Act state, the Act has its basis in the Law Commission Report. However, it
does not seem to have been thought appropriate to include in it a requirement
of court approval. In a note provided by counsel for the appellant, it is
suggested that the reason for this was that the government concluded that,
rather than creating inflexible legal rules, the better course would be for the
courts to continue to decide which cases should have their prior sanction, with
the situations in which that was the case being set out in a code of practice
(see Baroness Ashton of Upholland’s statement during the debate on the Bill in
the House of Lords, Hansard (HL Debates) 25 January 2005, vol 668, col 1243).
Mental Capacity Act 2005 Code of Practice
42.
The Mental Capacity Act 2005 Code of Practice (“the Code”), issued under
section 42 of the MCA 2005, came into effect in April 2007. Chapter 5 of the
Code has a section entitled “How should someone’s best interests be worked out
when making decisions about life-sustaining treatment?” It includes the following:
“5.31 All reasonable steps which
are in the person’s best interests should be taken to prolong their life. There
will be a limited number of cases where treatment is futile, overly burdensome
to the patient or where there is no prospect of recovery. In circumstances such
as these, it may be that an assessment of best interests leads to the
conclusion that it would be in the best interests of the patient to withdraw or
withhold life-sustaining treatment, even if this may result in the person’s death.
The decision-maker must make a decision based on the best interests of the
person who lacks capacity. They must not be motivated by a desire to bring
about the person’s death for whatever reason, even if this is from a sense of
compassion. Healthcare and social care staff should also refer to relevant
professional guidance when making decisions regarding life-sustaining treatment.”
“5.33 … Doctors must apply the
best interests’ checklist and use their professional skills to decide whether
life-sustaining treatment is in the person’s best interests. If the doctor’s
assessment is disputed, and there is no other way of resolving the dispute,
ultimately the Court of Protection may be asked to decide what is in the
person’s best interests.”
“5.36 As mentioned in para 5.33
above, where there is any doubt about the patient’s best interests, an
application should be made to the Court of Protection for a decision as to
whether withholding or withdrawing life-sustaining treatment is in the
patient’s best interests.”
43.
Chapter 6 of the Code is entitled “What protection does the Act offer
for people providing care or treatment?” Healthcare and treatment decisions are
dealt with from paras 6.15 to 6.19. Para 6.16 says that “major healthcare and
treatment decisions”, such as major surgery or a decision that no attempt is to
be made to resuscitate a patient, need “special consideration”. Health care
staff are directed to work out carefully what would be in the person’s best
interests, taking into account the views of people in various categories, and
involving an IMCA where no one else is available to consult. Para 6.17 commends
multi-disciplinary meetings as often the best way to decide on a person’s best
interests. They bring together healthcare and social care staff to discuss the
person’s options and may involve those who are closest to the person concerned.
However, the paragraph stresses that final responsibility for deciding what is
in the best interests of the person lies with the member of healthcare staff
responsible for the person’s treatment, who should record their decision, how
they reached it, and the reasons for it, in the patient’s clinical notes. As
long as they have “recorded objective reasons to show that the decision is in
the person’s best interests, and the other requirements of section 5 of the Act
are met, all healthcare staff taking actions in connection with the particular
treatment will be protected from liability.”
44.
Para 6.18 then goes on to single out certain treatment decisions in the
following terms:
“6.18 Some treatment decisions
are so serious that the court has to make them - unless the person has
previously made a Lasting Power of Attorney appointing an attorney to make such
healthcare decisions for them (see chapter 7) or they have made a valid advance
decision to refuse the proposed treatment (see chapter 9). The Court of
Protection must be asked to make decisions relating to:20
•
the proposed withholding or withdrawal of artificial nutrition and
hydration (ANH) from a patient in a permanent vegetative state (PVS)
•
cases where it is proposed that a person who lacks capacity to consent
should donate an organ or bone marrow to another person
•
the proposed non-therapeutic sterilisation of a person who lacks
capacity to consent (for example, for contraceptive purposes)
•
cases where there is a dispute about whether a particular treatment will
be in a person’s best interests.
See paragraphs 8.18-8.24 for more
details on these types of cases.”
Footnote 20 to para 6.18 refers to “procedures resulting
from those court judgments” but the court judgments in question are not named.
45.
Para 6.19 develops matters a little:
“6.19 This last category may
include cases that introduce ethical dilemmas concerning untested or innovative
treatments … where it is not known if the treatment will be effective, or
certain cases involving a termination of pregnancy. It may also include cases
where there is conflict between professionals or between professionals and
family members which cannot be resolved in any other way.
Where there is conflict, it is
advisable for parties to get legal advice, though they may not necessarily be
able to get legal aid to pay for this advice. Chapter 8 gives more information
about the need to refer cases to court for a decision.”
46.
Chapter 8 of the Code deals with the role of
the Court of Protection. Commencing at para 8.18, there is a section
headed “Serious healthcare and treatment decisions”. Paras 8.18 and 8.19 read:
“8.18 Prior to the Act coming
into force, the courts decided that some decisions relating to the provision of
medical treatment were so serious that in each case, an application should be
made to the court for a declaration that the proposed action was lawful before
that action was taken. Cases involving any of the following decisions should
therefore be brought before a court:
•
decisions about the proposed withholding or withdrawal of artificial
nutrition and hydration (ANH) from patients in a permanent vegetative state
(PVS)
•
cases involving organ or bone marrow donation by a person who lacks
capacity to consent
•
cases involving the proposed non-therapeutic sterilisation of a person
who lacks capacity to consent to this (eg for contraceptive purposes) and
• all other cases where
there is a doubt or dispute about whether a particular treatment will be in a
person’s best interests.
8.19 The case law requirement
to seek a declaration in cases involving the withholding or withdrawing of
artificial nutrition and hydration to people in a permanent vegetative state is
unaffected by the Act30 and as a matter of practice, these cases
should be put to the Court of Protection for approval.”
Footnote 30 refers to the Bland case.
47.
Just to complete the picture, para 15.36 says that “[t]here are some
decisions that are so serious that the court should always make them” and
refers the reader back to chapter 8 for more information about that type of
case.
48.
It will be noted that the Code of Practice does not seem to be entirely
consistent in its approach to involving the court in serious treatment decisions,
chapter 6 asserting that the Court of Protection “must” be asked to make
certain decisions, and chapter 8 that certain decisions “should” be brought
before a court. It will be necessary to return to this later.
Court of Protection Rules and Practice Directions
49.
Court of Protection Rules are made by the President of the Family
Division (who is the President of the Court of Protection), in exercise of
powers conferred by the MCA 2005. Assistance is provided by an ad hoc Rules
Committee which is chaired by the Vice-President of the Court of Protection,
and includes judges of the Court of Protection, experienced solicitors and
barristers, representatives of local authorities, court staff and the Official
Solicitor.
50.
The first set of rules were the Court of Protection Rules 2007 (SI
2007/1744). They were replaced by the Court of Protection Rules 2017 (SI
2017/1035) which came into force on 1 December 2017. Both sets of Rules have
been supplemented by Practice Directions.
51.
The Court of Protection Rules 2007 were accompanied by Practice
Direction 9E. This was entitled “Applications relating to serious medical
treatment” and set out the procedure to be followed where the application
concerned serious medical treatment. Para 5 of the Practice Direction said that
cases involving decisions about “the proposed withholding or withdrawal of
artificial nutrition and hydration from a person in a permanent vegetative
state or a minimally conscious state” “should be regarded as serious medical
treatment for the purposes of the Rules and this Practice Direction, and should
be brought to the court”. When the 2017 Rules replaced the 2007 Rules, this
provision was revoked and no equivalent provision was introduced. As to the
reasoning for this change, some insight is provided by the notes of a meeting
in July 2017 of the ad hoc Court of Protection Rules Committee, which are
headed Further Note: Serious Medical Treatment - Practice Directions 9E
and12A (28 July 2017).
52.
The notes state (para 7) that no final recommendation was formulated by
the committee. However, it is recorded (para 4) that it had been concluded that
Practice Direction 9E should not have included provisions as to what cases
should be brought to court, since a practice direction cannot properly direct
when an application should be made, and that accordingly any new practice
direction should not include any equivalent provision. The final paragraph
records that Charles J, as the chairman of the committee, would “recommend and
so instruct work to be done to remove and not replace Practice Direction 9E”.
It appears that the committee had considered, but not generally favoured, a
practice direction which took a different approach, for example recording what
had been said in the decided cases. It was, however, common ground that the
British Medical Association, the Law Society, the Ministry of Justice and the
Department of Health (the reference, in the conclusions and recommendations
section of the note, to the Ministry of Defence must be a mistake) would create
“a working group to address the underlying issues and the giving of guidance”
which would “take account of developing authority and so would consider how the
guidance produced could be readily updated”.
The case law: domestic decisions after MCA 2005
53.
Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67; [2014] AC 591 was the first case to come before the Supreme Court
under the MCA 2005. It concerned a patient with multiple medical problems, who
had a very limited level of awareness and lacked capacity to make decisions
concerning his medical treatment. The hospital Trust applied for a declaration,
under section 15 of the MCA 2005, that it would be lawful, as being in the
patient’s best interests, for three particular life-preserving treatments to be
withheld if his condition got worse. The family did not agree with the
withdrawal of treatment and, at first instance, Peter Jackson J refused to
grant the declaration. By the time of the Trust’s appeal to the Court of
Appeal, the patient had suffered a dramatic deterioration; he was completely
dependent on mechanical ventilation and was comatose or semi-comatose. The
Court of Appeal allowed the appeal and granted the declaration. The patient
subsequently died, following a cardiac arrest, but the Supreme Court
nonetheless heard his widow’s appeal, which gave rise to questions concerning
the proper approach to the assessment of a patient’s best interests in the
post-MCA 2005 era. The appeal was dismissed, although Peter Jackson J’s
approach to determining the patient’s best interests was preferred to that of
the Court of Appeal.
54.
Baroness Hale gave a judgment with which the other justices all agreed.
She restated, now with reference to the provisions of the MCA 2005, the
position as to invasive medical treatment of a patient. Although going over
ground covered in the pre-MCA 2005 cases, it is worth setting out the relevant
passages in full, since they establish the up-to-date legal context for the
questions that arise in the present appeal. She said:
“19. … Generally it is the
patient’s consent which makes invasive medical treatment lawful. It is not
lawful to treat a patient who has capacity and refuses that treatment. Nor is
it lawful to treat a patient who lacks capacity if he has made a valid and
applicable advance decision to refuse it: see the 2005 Act, sections 24 to 26.
Nor is it lawful to treat such a patient if he has granted a lasting power of
attorney (under section 10) or the court has appointed a deputy (under section
16) with the power to give or withhold consent to that treatment and that
consent is withheld; but an attorney only has power to give or withhold consent
to the carrying out or continuation of life-sustaining treatment if the
instrument expressly so provides (section 11(8)) and a deputy cannot refuse
consent to such treatment: section 20(5).
20. Those cases aside, it was
recognised by the House of Lords in In re F (Mental Patient: Sterilisation) [1990]
2 AC 1 that where a patient is unable to consent to treatment it is
lawful to give her treatment which is necessary in her best interests. Section 5
of the Mental Capacity Act 2005 now provides a general defence for acts
done in connection with the care or treatment of a person, provided that the
actor has first taken reasonable steps to establish whether the person
concerned lacks capacity in relation to the matter in question and reasonably
believes both that the person lacks capacity and that it will be in his best
interests for the act to be done. However, section 5 does not expressly
refer both to acts and to omissions, the giving or withholding of treatment.
The reason for this, in my view, is that the fundamental question is whether it
is lawful to give the treatment, not whether it is lawful to withhold it.”
55.
Baroness Hale underlined further, in para 22, that the focus is on
whether it is in the patient’s best interests to give the treatment, rather
than whether it is in his best interests to withhold it or withdraw it. She
continued:
“If the treatment is not in [the
patient’s] best interests, the court will not be able to give its consent on
his behalf and it will follow that it will be lawful to withhold or withdraw
it. Indeed, it will follow that it will not be lawful to give it. It also
follows that (provided of course that they have acted reasonably and without
negligence) the clinical team will not be in breach of any duty towards the
patient if they withhold or withdraw it.”
56.
The court did not have to consider the issue that now falls for
determination. However, it is worth noting that Baroness Hale spoke in
approving terms, in para 47, of the sensible advice given by the General
Medical Council in their guidance on Treatment and care towards the end of
life: Good practice in decision making (see below) and said that nothing in
her judgment was inconsistent with it.
57.
In re Briggs (Incapacitated Person) [2018] Fam 63 concerned a man
in a minimally conscious state. His wife brought proceedings under section 21A
of the MCA 2005 (as inserted by paragraph 9 of Schedule 2 to the Mental Health
Act 2007) seeking a determination that it was not in her husband’s best
interests to continue to be given the CANH that he needed to survive. By virtue
of having applied under section 21A, the wife was entitled to non-means tested
legal aid. It was contended, against her, that the issue of her husband’s treatment
could not be raised under section 21A (which deals with the court’s powers in
relation to the authorisation of deprivation of liberty) and that the
application should have been brought under other provisions of the Act, which
would have resulted in only means tested funding being available. The question
for the court was therefore whether section 21A was broad enough to cover the
treatment application. The Court of Appeal held that it did not provide a route
for determining questions in relation to medical treatment where, as in that
case, the deprivation of liberty itself was not the real or essential issue
before the court. An application for a welfare order under section 16 of the
Act should have been made.
58.
In the course of the judgment, King LJ (with whom both other members of
the court agreed, Sir Brian Leveson P adding a few words of his own) made some
observations about the issue that now concerns this court. Although obiter,
they are still valuable, not least for their insight into what happens in
practice. At the time, Practice Direction 9E remained in force, and King LJ
observed, at para 24, that at first glance there seemed to be a tension between
the practice direction, which appeared to say that all cases of
withholding or withdrawing treatment in relation to a minimally conscious
person should be brought before the court, and the Code which said that matters
should be brought before the court where there was a doubt as to the person’s
best interests. Because the Code was a statutory code to which the MCA 2005
made it mandatory to have regard, she said that the Code must take precedence
and then continued:
“26. … In reality virtually
all of these traumatic decisions are made by agreement between the families and
the treating teams of the person involved. To suggest that every case should go
before a judge (even where all concerned are in accord as to what was in the
best interests of the patient) would not only be an unnecessary pressure on the
overstretched resources of the NHS trusts and add to the burden on the courts
but, most importantly, would greatly add to the strain on the families having
to face these unimaginably distressing decisions. In my judgment, the practice
direction provides valuable procedural guidance but should not be interpreted
as introducing a requirement that all cases where a decision is to be made
about the withdrawal of CANH must come before a court.”
59.
Having rejected the argument that medical treatment decisions could be
taken, in a case such as that which the court was considering, under section
21A of the MCA 2005, King LJ set out in para 108 what, in her view, was the
proper approach to a medical treatment case. In so far as relevant to the
present appeal, she said:
“(i) If the medical treatment
proposed is not in dispute, then, regardless of whether it involves the
withdrawal of treatment from a person who is minimally conscious or in a
persistent vegetative state, it is a decision as to what treatment is in P’s
best interests and can be taken by the treating doctors who then have immunity
pursuant to section 5 of the MCA.
(ii) If there is a dispute
in relation to medical treatment of an incapacitated person, and, specifically,
where there is a doubt as to whether CANH should be withdrawn, then the matter
should be referred to the court for a personal welfare determination under
sections 15 to 17 of the MCA.”
60.
In similar vein, Sir Brian Leveson P said, at para 114, that “[i]f
agreement between the authorities and the family is possible, litigation will
not be necessary”.
61.
Finally, in terms of the post-MCA 2005 domestic case law, I would refer
to two decisions of the Court of Protection. It is important to do so, because
judges of the Family Division, who sit also in the Court of Protection, deal
regularly with the very difficult welfare decisions which have to be taken as
people approach the end of their lives, and this experience gives weight to
their views.
62.
In In re M (Adult Patient) (Minimally Conscious State: Withdrawal of
Treatment) [2011] EWHC 2443 (Fam); [2012] 1 WLR 1653, a case concerning a
woman in a minimally conscious state, Baker J expressed the view (paras 78, 82
and 257) that “all decisions about the proposed withholding or withdrawal of
ANH from a person in a persistent vegetative state or minimally conscious state
should always be brought to the court.” By this, it can be seen from para 257
that he meant that such decisions “must” be referred to court. He considered
that “the legal position has been clear since the decision in the Bland
case” and, in so far as there was any difference between the Code (which might
have suggested that applications to court were not necessary unless the
doctor’s assessment of the patient’s best interests was disputed) and the
position set out in Practice Direction 9E, it was the Practice Direction which
reflected the law.
63.
Our attention was invited to a fairly recent paper entitled “A matter
of life and death” (2017) 43 J Med Ethics 427 written by Baker J from which
it appears that, at least up to that point, he continued to be of the view that
he expressed in In re M. He acknowledged that the time may come when
applications to court were only necessary where there was a dispute, but did
not believe that time had yet been reached. In his view, at p 434, medical
science and the law were still evolving and until such time as there was
“greater clarity and understanding about the disorders of consciousness, and
about the legal and ethical principles to be applied, there remains a need for
independent oversight”, and “applications to the court should continue to be
obligatory in all cases where withdrawal of ANH is proposed.” He did, however,
identify an urgent need for a more streamlined procedure for court resolution,
avoiding undue cost and delay.
64.
In In re M (Incapacitated Person: Withdrawal of Treatment) [2017] EWCOP 18; [2018] 1 WLR 465, the court was concerned with the withdrawal of CANH
from a woman who was suffering from Huntington’s disease and was in a minimally
conscious state. Her family, her clinicians, and a specialist from whom a
second opinion had been sought, were agreed that it was in her best interests
not to continue with treatment, notwithstanding that that would result in her
death, and a declaration was made to that effect.
65.
Peter Jackson J responded to a request from the parties for
clarification as to whether legal proceedings were, in fact, necessary prior to
withholding or withdrawing CANH when an incapacitated person’s family and
clinicians agreed that CANH was no longer in the person’s best interests. At
the time he decided the case, Practice Direction 9E (which had been influential
in Baker J’s decision) was still effective, but his view differed from Baker
J’s. Notwithstanding the provisions of the Practice Direction, he held (paras
37 and 38) that, on the facts with which he was dealing, the decision about
what was in M’s best interests could lawfully have been taken by her treating
doctors, having fully consulted her family and having acted in accordance with
the MCA 2005 and with recognised medical standards, without reference to the
court. He pointed out that there was no statutory obligation to bring the case
to court and gave his view that none of the cases and materials cited in his
judgment sustained the proposition that a court decision was necessary as a
matter of law rather than of practice. He did not consider that article 2 of
the ECHR mandated court oversight, taking the view that the approach taken in
M’s case fully respected her article 2 rights in a fashion contemplated in Lambert
v France (2016) 62 EHRR 2. He drew attention to the fact that,
overwhelmingly, treatment decisions up to and including the withholding of
life-support are taken by clinicians and families working together in
accordance with good practice, with no suggestion of mandatory court
involvement, and expressed the view that it was anomalous to require it for a
limited subset of cases (those involving PVS or MCS) which were not
sufficiently different to justify different treatment. Identifying another
anomaly, he also observed that there was no suggestion that the court should be
involved where there was a valid and applicable advance decision, yet the grave
consequences of the decision and the risk of error were no different in such
cases from cases where there was no advance decision. He also referred to the
deterrent effect of costly and time-consuming proceedings, “both on the
individual case and on the patient population in general”. He considered that a
mandatory litigation requirement may deflect clinicians and families from
making true best interests decisions and in some cases lead to inappropriate
treatment continuing by default. He gave M’s case as an example, in that she
continued to receive CANH that neither her doctors nor her family thought in
her best interests “for almost a year until a court decision was eventually
sought”. He made quite clear, however, that the court is always available where
there is disagreement, or where it is felt for some other reason that an
application should be made, although this would only arise in rare cases.
Strasbourg jurisprudence
66.
Since Mr Gordon relies upon the ECHR as one foundation for his argument
that there is a requirement to apply to court for a declaration in every case,
it is important to look at the case law of the ECtHR on the subject. I have
already referred to the case of Burke in 2006. The case of Lambert v
France (2016) 62 EHRR 2 is also very much in point, although it received
only a passing mention in the appellant’s written case. If there were any doubt
as to its significance, in Gard v United Kingdom (2017) 65 EHRR SE9, the
ECtHR described it as “its landmark Grand Chamber case Lambert” (para
79).
67.
Lambert concerned a man, VL, who had sustained serious head
injuries, rendering him tetraplegic and completely dependent. He had
irreversible brain damage and was receiving artificial nutrition and hydration.
Through “the collective procedure” established in France by the Public
Health Code as amended by the Act of 22 April 2005 on patients’ rights
and end of life issues (“the Public Health Code”), a decision was taken by
Dr K to withdraw nutrition and hydration. VL’s wife, and ultimately also his
parents, a half-brother and a sister, were involved in the decision-making
process. His parents, half-brother and sister opposed the withdrawal of
nutrition and hydration, and there was considerable litigation in France. This culminated
in the Conseil d’État. Furnished with an expert medical report which concluded
that VL was in a vegetative state, and after considering observations on the
Public Health Code from a number of amici curiae, the Conseil held that Dr K’s
decision was not unlawful.
68.
The parents, half-brother and sister made an application to the ECtHR,
arguing that there was a violation of (inter alia) articles 2 and 8 of the
ECHR. By a majority, the court found that there was no violation of article 2,
and that there was no need for a separate ruling on article 8.
69.
In its judgment, it referred back to its previous decisions in Glass (2003) 37 EHRR CD66 and Burke v United Kingdom (Application No 19807/0)
(supra), observing at para 143 that:
“in addressing the question of the
administering or withdrawal of medical treatment [in those cases], it took into
account the following factors:
-
the existence in domestic law and practice of a regulatory framework
compatible with the requirements of article 2;
-
whether account had been taken of the applicant’s previously expressed
wishes and those of the persons close to him, as well as the opinions of other
medical personnel; and
-
the possibility to approach the courts in the event of doubts as to the
best decision to take in the patient’s interests.”
These factors were relevant to
its decision about VL (and were set out again subsequently in para 80 of Gard),
as well as the criteria laid down in the Council of Europe’s Guide on the
decision-making process regarding medical treatment in end-of-life situations.
The Guide had been drawn up in the course of work on patients’ rights and with
the intention of facilitating the implementation of the Oviedo Convention on
Human Rights and Biomedicine (see para 59 of Lambert), which has
been ratified by 29 of the Council of Europe member states, but not the United
Kingdom.
70.
The ECtHR observed (para 165) that the comparative law materials
available to it showed that, in those countries which authorise the withdrawal
of treatment, and where the patient has not given any advance directive, there
is a great variety of arrangements governing the taking of the final decision
to withdraw treatment. The most common situation was that the final decision
was taken by the doctor treating the patient, but it could be taken jointly by
the doctor and the family, by the family or legal representative, or (as it is
put in para 75) “even the courts”. The ECtHR determined that the French legal
provisions, as interpreted by the Conseil d’État, constituted a legal framework
which was sufficiently clear to regulate with precision the decisions taken by
doctors in situations such as VL’s, and which ensured protection of patients’
lives.
71.
It is worth looking in a little detail at what was required by French
law at the relevant time. By the Public Health Code (including the Code of
Medical Ethics which is part of it), the decision to limit or withdraw
treatment of a person who is unable to express his or her wishes is taken by
the doctor in charge of the patient, after the implementation of “a collective
procedure”. The circumstances in which such a decision can be taken are set out
in article R.4127-37 para I of the Public Health Code. I have included the
provision in both French and English in order that the reference to “unreasonable
obstinacy” in the English translation might be better understood; the ECtHR
explains it in para 53 as continuing treatment to unreasonable lengths.
“I. En toutes
circonstances, le médecin doit s’efforcer de soulager les souffrances du malade
par des moyens appropriés à son état et l’assister moralement. Il doit
s’abstenir de toute obstination déraisonnable dans les investigations ou la
thérapeutique et peut renoncer à entreprendre ou poursuivre des traitements qui
apparaissent inutiles, disproportionnés ou qui n’ont d’autre objet ou effet que
le maintien artificiel de la vie.”
“I. The doctor shall at all
times endeavour to alleviate suffering by the means most appropriate to the
patient’s condition, and provide moral support. He or she shall refrain from
any unreasonable obstinacy in carrying out examinations or treatment and may
decide to withhold or discontinue treatment which appears futile or
disproportionate or the only purpose or effect of which is to sustain life
artificially.”
72.
Before taking the decision, the doctor is required to consult with the
care team where there is one, and there has to be a reasoned opinion of at
least one doctor acting as an independent consultant. The decision has to take
into account any wishes previously expressed by the patient, in particular in
the form of advance directives, the views of any person of trust that the
patient may have designated and of the family or, failing this, of another
person close to the patient. Reasons have to be given for any decision to limit
or withdraw treatment, and the position has to be documented in the patient’s
file.
73.
Whilst the matter had, in VL’s case, been litigated in the courts,
demonstrating that recourse could be had to court if necessary, court approval
was not required by the French provisions. Although the applicants did not
advance any argument that this rendered the system unsatisfactory for the
purposes of article 2, they did complain about the decision-making process on
other grounds, considering that the decision should have been a genuinely
collective one or, at the very least, provision should have been made for
mediation in the event of disagreement. This complaint led the court to
consider what obligations there were concerning the decision-making process. Rejecting
the complaint, it said (para 168) that “the organisation of the decision-making
process, including the designation of the person who takes the final decision
to withdraw treatment and the detailed arrangements for the taking of the
decision, fall within the state’s margin of appreciation.”
74.
The French process (as amended, although not substantially, in 2016)
once more withstood scrutiny by the ECtHR in January 2018 in Afiri and
Biddarri v France (Application No 1828/18) 23 January 2018. The court again
re-iterated the elements set out in para 143 of Lambert (supra) and
repeated the observations it had there made (para 168) about the organisation
of the decision-making process.
Other guidance
75.
Various medical bodies in the UK have produced codes relating to the
withdrawal of life sustaining treatment. In chronological order, they are:
i)
The BMA’s “Withholding and Withdrawing Life Prolonging Medical
Treatment: Guidance for decision making” (first published in 1999, 3rd ed
2007)
ii)
The GMC’s “Treatment and care towards the end of life: good practice
in decision making” (published May 2010)
iii)
The report of the Royal College of Physicians (“the RCP”) entitled “Prolonged
disorders of consciousness: National clinical guidelines (the report of a
working party in 2013)
iv)
An Interim Guidance document produced in December 2017 by the GMC, BMA
and RCP entitled “Decisions to withdraw clinically-assisted nutrition and
hydration (CANH) from patients in permanent vegetative state (PVS) or minimally
conscious state (MCS) following sudden-onset profound brain injury”.
76.
The last document referred to in the previous paragraph was published
after the decisions at first instance in the present case, the Court of
Appeal’s decision in Briggs, and Peter Jackson J’s decision in In re
M. It was not meant to override the existing guidance from each of the
three bodies, but to supplement it, responding to the statements in those cases
that there is no requirement for treating clinicians to seek court approval to
withdrawing CANH, and to the withdrawal of Practice Direction 9E. It summarises
the recent developments in the law, and also the views of the GMC, BMA, and RCP
about good clinical and professional practice in the area. It is intended that
before long it will be replaced with a new final guidance, which (the
introduction to the Interim Guidance says) “will recommend safeguards to ensure
that a robust and thorough assessment process continues to be followed prior to
the withdrawal of CANH”.
77.
It is necessary to look in more detail at this body of
professional guidance since it has a very important part to play in ensuring
the proper protection of patients and in maintaining the confidence of the
public in the health care system. Whatever impression might be conveyed by
terms such as “guidance” and “guidelines”, the practice set out in the various
documents has significant weight. This is perhaps particularly so in relation
to guidance emanating from the GMC, which has a special role in providing
guidance for the medical profession. It was established by statute, the Medical
Act 1983, with the over-arching objective of protecting the public, and is
charged with setting and maintaining the standards that doctors across the UK
must follow, where necessary taking action in relation to a doctor if he or she
is found to be falling below the required standard. Its statutory powers under
the Medical Act include power to issue advice for members of the medical profession on standards of
professional conduct, standards of professional performance and medical ethics
(section 35).
78.
The GMC’s 2010 guide to good practice draws upon the domestic and
European jurisprudence and covers the matters that one would therefore expect.
I will not rehearse all those matters here, particularly given that guidance is
continuing to evolve, and will simply give a broad indication of the nature and
ambit of the document. It provides the doctor with a decision-making model,
applicable where an adult lacks the capacity to decide about treatment and
care. As part of the decision-making process, the doctor is to:
i)
make an assessment of the patient’s condition,
ii)
consider what treatments are clinically appropriate and likely to
benefit the patient,
iii)
find out about any valid advance decision made by the patient or anyone
who has legal authority to decide for him,
iv)
as far as practical and appropriate, consult members of the healthcare
team and those close to the patient and, when deciding about treatment, take
their views into account,
v)
take steps towards the appointment of an IMCA where appropriate,
vi)
attempt to resolve disagreements about what treatment and care would be
of overall benefit to the patient, seeking legal advice on applying to court
for an independent ruling if agreement is not reached.
79.
The guide requires a record to be made of decisions about treatment, and
of who was consulted in relation to the decisions. There is a section
specifically addressing CANH, particularly stressing the need to listen to and
consider the views of the patient and those close to them, and to explain the
issues to be considered. The doctor is alerted to the need, in the event of
disagreement about CANH, to ensure that the patient or someone acting on their
behalf is advised on how to access their own legal advice or representation.
Where the patient is not expected to die in any event in hours or days, but the
doctor judges that CANH would not be of overall benefit to him, all reasonable
steps must be taken to get a second opinion from a senior clinician who is not
already directly involved but who should examine the patient. If that is not
practically possible in exceptional circumstances, advice from a colleague must
still be sought. As to patients in PVS or a condition closely resembling it,
the guide says that “the courts … require that you approach them for a ruling”.
This is, however, modified in the Interim Guidance of December 2017 which
proceeds upon the basis that there will be cases in which no court application
is required.
80.
The December 2017 Interim Guidance starts by identifying that a best
interests decision cannot be taken for the patient where he has made a valid
and applicable advance decision to refuse treatment which covers CANH, or where
an attorney appointed under a suitable lasting power of attorney makes the
decision. It then goes on to say that where there is disagreement about best
interests or the decision is finely balanced, an application should be made to
court for a declaration as to whether CANH continues to be in the patient’s
best interests. Then, dealing with the remainder of cases, the guidance sets
out the steps that should be taken to ensure that there is proper consultation
prior to determining what is in the patient’s best interests. These include
ensuring that the RCP guidelines have been followed regarding assessment, with
the assessment carried out by professionals with the appropriate training, that
guidance in the Mental Capacity Act Code, and from the BMA, RCP and/or GMC has
been followed, that there have been formal, documented best interests meetings
with those who care for the patient and are interested in his or her welfare,
and that an IMCA is consulted where necessary. The doctor is told to find out
as much as possible about the patient’s values, wishes, feelings and beliefs. A
second clinical opinion should be sought from a consultant with experience of
PDOC who has not been involved in the patient’s care and who should, so far as
reasonably practical, be external to the NHS Trust/Clinical Commissioning Group
(“CCG”); the consultant should examine the patient and review the medical
records and the information that has been collected. There should be very
detailed records kept, both a clinical record (covering many specified matters)
and a record of discussions, meetings and so on.
81.
The RCP document is lengthy, covering the diagnosis and management of
patients with PDOC. There is a section devoted to assessment, diagnosis, and
monitoring, in which the doctor is alerted to the challenges in making an
accurate diagnosis and the need for evaluation by a multi-disciplinary team of
expert clinicians, with the family and close friends of the patient having a
key role, and is told that the diagnostic assessment process should follow a
structured approach, elements of which are described in some detail. Another
section of the document covers ethical and medico-legal issues, also in detail.
82.
The BMA guidance is similarly substantial, its aim being to “provide a
coherent and comprehensive set of principles which apply to all decisions to withhold
or withdraw life-prolonging treatment” (Introduction p xiii).
83.
It should be noted that the Faculty of Intensive Care Medicine (“FICM”)
and the Intensive Care Society (“ICS”) have also issued joint recommendations
in the form of “Guidelines for the provision of intensive care services”;
these include recommendations about end of life care.
The submissions on behalf of the Official Solicitor
84.
Considerations of human dignity and the sanctity of human life are,
quite rightly, central to the Official Solicitor’s case. His submission is that
only by requiring judicial scrutiny in every case concerning the withdrawal of
CANH from a patient suffering from PDOC can human life and dignity be properly
safeguarded. An important part of the protection is, he submits, the oversight
of an independent and neutral person such as the Official Solicitor, who can
investigate, expose potential disputes, and give the patient a voice in the
decision-making, and it is court proceedings that enable the Official Solicitor
to be involved. Medical guidance on its own is, in his submission, insufficient
protection, and so, until other protective mechanisms are devised, the common
law and/or the ECHR dictate that an application to court must be made.
85.
I do not understand the Official Solicitor to go so far as to submit
that In re F (Mental Patient: Sterilisation) and Bland’s case
specifically impose a common law requirement for a court application in every
case. His argument is less direct. In his written case, Mr Gordon says that it “is
abundantly clear from those cases … that the House of Lords implicitly accepted
the link between the need for common law protection of patients’ rights and
necessary mechanisms (not yet sufficiently advanced) to give full protection of
those rights.” That, in his submission, is what led them to say that for the
time being a declaration should be sought, it being the only suitably
protective mechanism so far available. Since, in the Official Solicitor’s view,
the necessary mechanisms have still not been developed, there remains no
satisfactory alternative protection for patients. In those circumstances, it is
artificial, he submits, to distinguish between a statement of good practice,
and what is required by common law, as they are in fact one and the same,
necessitating court involvement in every case. The passing of the MCA 2005 has
not changed matters, it is submitted, and the common law is not undermined by
the absence of an express statutory provision in it requiring court
involvement. Indeed it is asserted that, on the contrary, “[i]t was clear that
Parliament intended that judicial scrutiny of any decision to withdraw CANH
should continue for the foreseeable future.”
86.
In terms of recent support for his position, Mr Gordon seeks to rely
upon something that Baroness Hale said in In re N v (An Adult) (Court
of Protection: Jurisdiction) [2017] AC 549, para 38. Whereas I intend to
address the bulk of the Official Solicitor’s submissions later, this one can be
dealt with straight away. I did not include In re N v (An Adult)
(Court of Protection: Jurisdiction) in my résumé of the authorities as it
is not on the point which requires determination here. The issue related to the
powers of the Court of Protection where a public body, the local commissioning
group, refused to provide or fund a care package for an incapacitated adult
which his parents thought would be in his best interests. At para 38,
introducing her discussion of that very different issue, Baroness Hale said:
“… Section 5 of the 2005 Act gives
a general authority, to act in relation to the care or treatment of P, to those
caring for him who reasonably believe both that P lacks capacity in relation to
the matter and that it will be in P’s best interests for the act to be done. This
will usually suffice, unless the decision is so serious that the court itself
has said it must be taken to court…” (My italics)
It seems to me over-ambitious to seek to rely upon the
italicised sentence, taken out of context, as support for the existence of the
common law requirement for which Mr Gordon contends.
87.
Turning to the ECHR, the Official Solicitor seeks to invoke article 2
(right to life), article 6 (right to a fair trial), article 8 (right to respect
for private and family life) and article 14 (prohibition of discrimination) as
further support for the assertion that court involvement is a necessary
component in securing the patient’s rights. The jurisprudence of the ECtHR
makes clear, he says, that if there is doubt as to the medical position or the
patient’s best interests, there must be a real remedy and, in cases such as the
present, only a court application will reveal whether there is doubt. Here,
without the Official Solicitor’s full participation in the present proceedings,
it was impossible to know whether or not there was any dispute about the
medical evidence or about Mr Y’s best interests, and as a result Mr Y’s article
6 rights were eroded to the point that his article 2 rights were afforded no
effective protection.
88.
An argument is also advanced in reliance upon article 14, which it is
said will be breached because a patient in Mr Y’s position unjustifiably has
less protection than an adult who has capacity and is terminally ill, the
latter having the protection in relation to assisted dying afforded by section
2 of the Suicide Act 1961 (which makes it an offence to do an act capable of
encouraging or assisting a suicide).
89.
It is important to note some of the special features of PDOC cases which
in the Official Solicitor’s submission necessitate court involvement. He
stresses the particular vulnerability of patients with PDOC, the difficulty in
assessing the level of a person’s consciousness, and the dangers of a wrong
diagnosis or a wrong conclusion about what is in the person’s best interests.
He invites attention to examples of diagnostic errors in the decided cases
where, for example, a patient has been thought to be in a permanent vegetative
state but found later to be in a minimally conscious state. He submits that,
although decisions about withdrawing treatment have to be made in relation both
to patients with PDOC, and patients in intensive care with life-limiting
illnesses or injuries, the two categories of patient are different. The patient
with PDOC may be clinically stable and may live for a prolonged period with
only appropriate nursing care, hydration and nutrition, whereas the patient in
intensive care may require more active medical intervention and support and may
face death within hours or days. Furthermore, it is suggested that there is a
particular concern about the morality of withdrawing CANH, which many might see
as basic care, as opposed to certain other types of treatment.
90.
Lord Brandon’s reasoning at p 56 of In re F (Mental Patient:
Sterilisation) (supra) (where he identified a number of special features
which made the involvement of the court highly desirable) applies equally to
PDOC cases, it is submitted. Similarly in point is Lord Lowry’s concern,
expressed in the Bland case (supra), that without court oversight, the
doctor will be judge in his own cause. In addition, there is a danger, it is
said, that the doctor may persuade family members who might not have the
resources (emotional or financial) to question the doctor’s decision. Far from
the need for independent scrutiny having diminished since the Bland
case, Mr Gordon submits that it has increased as the growing understanding of
disorders of consciousness has revealed the shortcomings of the assessments
that have to be carried out.
Discussion
91.
Permeating the determination of the issue that arises in this case must
be a full recognition of the value of human life, and of the respect in which
it must be held. No life is to be relinquished easily. As Baroness Hale said at
para 35 of Aintree University Hospitals NHS Foundation Trust v James
(supra):
“The authorities are all agreed
that the starting point is a strong presumption that it is in a person’s best
interests to stay alive.”
And yet there may come a time when life has to be
relinquished because that is in the best interests of the patient. The
situation of Mr Y, and the ordeal through which his family has been going,
serve as a solemn reminder of how illness may confront any one of us at any
time and of the difficulties that face the patient, his family, and the medical
staff whose job it is to do the best that they can for them. As Lord
Browne-Wilkinson said in Bland’s case (p 877), the questions for us are
questions of law, “[b]ut behind the questions of law lie moral, ethical,
medical and practical issues of fundamental importance to society.” The weight
of that consideration anchors the legal decisions which I would make.
92.
Before turning to the central questions in the case, it is worth
restating the basic position with regard to medical treatment, because it is
upon this foundation that everything else is built. Although the concentration
is upon the withdrawal of CANH, it must be kept in mind that the fundamental
question facing a doctor, or a court, considering treatment of a patient who is
not able to make his or her own decision is not whether it is lawful to
withdraw or withhold treatment, but whether it is lawful to give it. It is
lawful to give treatment only if it is in the patient’s best interests.
Accordingly, if the treatment would not be in the patient’s best interests,
then it would be unlawful to give it, and therefore lawful, and not a breach of
any duty to the patient, to withhold or withdraw it. For a recent authoritative
statement to this effect, see the Aintree case, although I would add
that if a doctor carries out treatment in the reasonable belief that it will be
in the patient’s best interests, he or she will be entitled to the protection
from liability conferred by section 5 of the MCA 2005 (see para 36 above). It
is also important to keep in mind that a patient cannot require a doctor to
give any particular form of treatment, and nor can a court (see, for example, R
(Burke) v General Medical Council at paras 50 and 55, and the Aintree
case at para 18).
93.
I turn then to the core issue, commencing with a consideration of what,
if any, requirements are imposed by domestic law. This consideration must start
with the Bland case. In my view, there can be no question of the House
of Lords there having imposed a legal requirement that in all cases of PVS (or
any other form of prolonged disorder of consciousness) an application must be
made to the court before CANH can be withdrawn. The scene had been set in In
re F (Mental Patient: Sterilisation), where consideration was given to
whether it was necessary to seek a declaration before carrying out a
sterilisation operation on a woman who could not consent to the procedure
herself. This was the case in which Lord Brandon set out the six features which
made it highly desirable to seek the involvement of the court as a matter of
good practice, five of which features the Official Solicitor relies upon in his
present argument. That none of their Lordships in In re F considered
that they were laying down a common law requirement to apply to the court is
put beyond doubt by the speech of Lord Griffiths. It will be recalled that he
would have been inclined to make it a legal requirement to seek the sanction of
the court in all cases, and thought that the common law could be adapted to do
so, but was deterred because the other members of the House considered that
this would be making new law and inappropriate. In re F was very much in
the minds of their Lordships in the Bland case, as can be seen from
their speeches, and the approach they took to the question of court involvement
was similar to that taken in In re F. There was no suggestion that the
common law was now being developed in the sort of way that Lord Griffiths had
eschewed in In re F. It was made quite clear that it was “as a matter of
practice” that guidance should be sought from the court by way of declaratory
relief, the practice of applying being “desirable”. It was contemplated that
the President of the Family Division would keep matters under review and it was
hoped that he would, in time, be able to limit applications for declarations to
cases where there was a special need; this would have been difficult had the
House of Lords created a legal requirement of a declaration in every case.
94.
The position was underlined in R (Burke) v General Medical Council (supra)
where the Court of Appeal expressly rejected the argument that there was a
legal duty to seek a declaration from the court before withdrawing artificial
nutrition and hydration from a patient in PVS, affirming that the House of
Lords in Bland’s case had “recommended” “as a matter of good practice”
that reference be made to the court. Mr Gordon submits that the Court of Appeal
was not there addressing the same issue as this court must now address, namely
the protection of “the vulnerable class of patients with PDOC”, and that it had
only been addressed on the situation of PVS patients “in passing”. I do not
consider that Burke’s case can be removed from the picture in this way.
It seems to me to be an accurate statement of the legal position and of
relevance to the issue before us.
95.
Accordingly, when the Mental Capacity Act 2005 came into force in 2007,
there was no universal requirement, at common law, to apply for a declaration
prior to withdrawing CANH. Mr Sachdeva, for the respondents, argues that it
would be inconsistent with the statutory regime established by Parliament in
the MCA 2005 to have such a requirement. The Act makes provision for decisions
to be taken on behalf of those who lack capacity, based upon what is in their
best interests, without involving a court. By section 5, subject of course to
the impact of any relevant lasting power of attorney or advance decision to
refuse treatment, a clinician who treats a patient in accordance with what he
reasonably believes to be the patient’s best interests does not incur any
liability, in relation to the treatment, that he would not have incurred if the
patient had had capacity to consent and had consented to it. Provision is made
for the court to make decisions about personal welfare where necessary, but the
Act does not single out any sub-class of decisions which must always be placed
before the court, and there is no requirement for the Official Solicitor to be
involved in best interest decisions relating to serious medical treatment.
96.
There is an attraction to Mr Sachdeva’s argument that the MCA 2005 is a
complete statutory code but, had there been a common law requirement of court
involvement by the time it was passed, I think I might nonetheless have been
prepared to accept that it could have survived the silence of the Act on the
subject. However, as there was no pre-existing common law requirement, the
point does not arise for decision. The absence of any requirement in the
statute of the type for which the Official Solicitor contends is nevertheless
of interest, given the recommendations of the Law Commission Report No 231
which brought it to attention as one of the possible options, and given that
the Act is based upon that report.
97.
In contrast to the statute itself, the Mental Capacity Act 2005 Code of
Practice does speak of applications to court in cases such as the present, but
is contradictory in what it says about them. Paras 5.33 and 5.36 speak in terms
of an application being made if there is any doubt or dispute about the
doctor’s assessment of the patient’s best interests. Although para 6.18
suggests that the court “has to make”/“must be asked to make” the decision
about withholding or withdrawing artificial nutrition and hydration from a
patient in PVS, that statement seems to have been derived from the case law,
which dealt only in terms of good practice, not of legal obligation. And paras
8.18 and 8.19, to which para 6.18 invites reference, say that an application
“should” be made to the court and that “as a matter of practice” such cases “should
be put to the Court of Protection for approval”, referring to a “case law
requirement to seek a declaration”, the source of which is given as the Bland
case. A Code in these rather ambiguous terms, plainly attempting to convey what
the cases have so far decided, cannot extend the duty of the medical team
beyond what the cases do in fact decide is incumbent upon them. Whatever the
weight given to the Code by section 42 of the MCA 2005, it does not create an
obligation as a matter of law to apply to court in every case.
98.
Practice Direction 9E which accompanied the Court of Protection
Rules 2007 said that decisions about the proposed withholding or withdrawal of
artificial nutrition and hydration from a person in a persistent vegetative
state or a minimally conscious state “should be brought to court”. It is
understandable that the ad hoc Rules Committee decided that, in so far as the
practice direction purported to direct which cases had to be brought to court,
it went beyond its proper scope; a practice direction cannot establish a legal
obligation when none exists already, see U v Liverpool City Council
(Practice Note) [2005] 1 WLR 2657, para 48. In any event, as no equivalent practice direction accompanies the Court of Protection Rules 2017, it is not necessary
to delve into the matter further.
99.
No requirement to apply to court can be found in the post-MCA 2005
case-law either. The decision of Baker J in In re M (Adult Patient)
(Minimally Conscious State: Withdrawal of Treatment) does not assist
because it proceeded upon the basis that the Bland case had established
that all decisions about the proposed withholding or withdrawal of CANH had as
a matter of law to be brought to court and I would not interpret the Bland
case in this way.
100.
The view of King LJ, expressed obiter in the Court of Appeal in In re
Briggs [2018], that treating doctors can take a decision without recourse
to court where there is no dispute about it should, however, be accorded
weight. This is so even allowing for the possibility raised by Mr Gordon that
the court may not have had full argument on the subject and may not have been
referred to all the relevant passages in the Code, as King LJ spoke only of one
of the less prescriptive provisions. It is important to note the views of those
who, like her, have long experience in the Family Division where life and death
issues are regularly litigated.
101.
Peter Jackson J’s judgment in In re M (Incapacitated Person:
Withdrawal of Treatment) (given after the Court of Appeal’s decision in the
Briggs case) is also of assistance, particularly for the judge’s
analysis of why, in his view, the decision as to what was in M’s best interests
could have been taken without reference to the court. Mr Gordon points out that
the Official Solicitor was not formally involved in that case and that there
was no oral argument on the topic. However, as Peter Jackson J set out in para
30, he did invite and receive a “substantial skeleton argument” prepared by
leading and junior counsel on behalf of the Official Solicitor which, he said,
“(among other things) trenchantly asserts that an application to court should
be made in every case of proposed withdrawal of CANH, unless there is a valid
advance directive.” There is no doubt, therefore, that Peter Jackson J will
have been made aware of the arguments that ran counter to the view he
ultimately formed. Mr Gordon advances four respects in which he says the judge
went wrong, namely: (1) he failed to recognise that PDOC patients are distinct
from other patients, (2) he mistakenly attributed the delay to the proceedings
when the majority of it appears to have been caused by other factors, (3) he
failed to see that matters are very different when an advance decision has been
made pursuant to section 24 of MCA 2005, and (4) he failed to recognise that if
there is no requirement for court involvement, the article 2 requirement
identified in Lambert v France for regulations compelling hospitals to
adopt appropriate measures for the protection of patients’ lives will not be
satisfied. For the most part, these are issues which arise as part of the
Official Solicitor’s argument before this court and the reasons why I do not
find them compelling will therefore appear in due course.
102.
There being, therefore, in my view, no requirement in domestic law for
an application to court of the type that the Official Solicitor says is
imperative for the protection of patients, the next question is whether the
ECHR generates a need for an equivalent provision to be introduced. To my mind,
the answer is a clear “No”.
103.
The first port of call is the “landmark Grand Chamber case” of Lambert
v France on the French collective procedure which, it will be recalled, provided
for the doctor to take the decision, with no application to court required, yet
satisfied the ECtHR as being sufficiently protective of the articles 2 and 8
rights there engaged. I set out in a little detail earlier (para 71) what the
French procedure required and it bears a significant resemblance to the
procedure set out in the medical guidance in this country. In each case, the
context for the decision is similar in that the French article R.4127-37 para I
says that the doctor can decide to withhold or discontinue treatments “qui
apparaissent inutiles, disproportionnés ou qui n’ont d’autre objet ou effet que
le maintien artificiel de la vie”, and para 5.31 of the Mental Capacity Act
Code speaks of cases where “treatment is futile, overly burdensome to the
patient or where there is no prospect of recovery.” The French code requires
the doctor to consult with the care team, and to take into account any wishes
expressed by the patient and the views of people close to him, and the same is
required by the MCA 2005 and the medical guidance here. An independent
consultant’s opinion is required in France and should also be sought in this
country. The court is available if necessary in France as it is here.
104.
As I have said, Lambert v France was not a central feature of the
Official Solicitor’s written case, but as he developed his argument in oral
submissions, Mr Gordon sought to distinguish the decision on the basis that
France has a formally prescribed procedure “with guarantees” and we do not. To
comply with the ECHR, a system must have a prescribed procedure, he says, and
the sort of professional guidance that we have in this country will not
suffice.
105.
The ECtHR has repeatedly set out certain factors that it considers
relevant to the question of administering or withdrawing medical treatment.
They can be found in para 143 of Lambert v France (see para 69 above),
and also in Glass v United Kingdom, Burke v United Kingdom, Gard
v United Kingdom, and Afiri and Biddarri v France. The first of
those factors is “the existence in domestic law and practice of a regulatory
framework compatible with the requirements of article 2”, which no doubt is
(quite properly) the foundation of Mr Gordon’s submission that a prescribed
procedure is required. Where I differ from Mr Gordon is in his assertion that
the system in this country is not what the ECtHR was looking for. True it is
that in France there is a comprehensive legislative framework, set out in the Code
de la santé publique, whereas the same cannot be said for our domestic law.
However, we too have provisions designed to protect the human rights of
patients and their families, and I have no difficulty in viewing the combined
effect of the MCA 2005, the Mental Capacity Act Code, and the professional
guidance, particularly that emanating from the GMC, as a “regulatory framework”.
106.
The basic protective structure is established by the MCA 2005, which I
have described above. An advance decision about life-sustaining treatment can
be taken in accordance with sections 24 to 26 and will be respected. Similarly,
a proper role is established for lasting powers of attorney by section 9 and
the other sections associated with it. Where the decision is taken by a doctor,
section 5 establishes the conditions that must be satisfied if the doctor is to
be protected from liability. It directs the focus firmly to the best interests
of the patient, and that imports the provisions of section 4 which include
taking into account the perspective that the patient would have on the decision
if he had capacity and the views of those with an interest in the patient’s
welfare. Section 4(5) imposes the safeguard that the person making the decision
must not be motivated by a desire to bring about his death. Section 37 makes
provision for an IMCA to represent the patient where appropriate, and sections 15
to 17 ensure that application can be made to court for a decision about the
patient’s welfare where necessary.
107.
Notwithstanding the contradictions in it with which I have already
dealt, the Code contains valuable guidance, and regard must be had to it by
virtue of section 42. The passages that I referred to earlier are only a small
fraction of the Code but it will be noted from them that, for example, it
commends multi-disciplinary meetings when making healthcare and treatment
decisions, and speaks about recording decisions and the reasons for them. It
also expressly provides (see para 5.31, quoted above) that when making
decisions regarding life-sustaining treatment, healthcare and social care staff
should refer to relevant professional guidance. Given the statutory framework
within which the GMC operates, I would single out its guidance to the medical
profession as undeniably part of the established regulatory framework. As I
have set out above, it has provided its own individual guidance in 2010, and has
joined with the BMA and RCP to provide supplementary Interim Guidance in 2017,
with final guidance planned for 2018.
108.
The second of the factors to which consistent reference has been made by
the ECtHR is whether account has been taken of the patient’s previously
expressed wishes and those of people close to him, as well as the opinions of
other medical personnel. The MCA 2005 requires this to happen, and is
reinforced by the professional guidance available to doctors.
109.
The third factor that features consistently in the ECtHR’s evaluation is
the possibility of approaching the courts in the event of doubts as to the best
decision to take in the patient’s interest and, of course, that possibility
exists in this country. As Peter Jackson J said in In re M (Incapacitated
Person: Withdrawal of Treatment) at para 38, “those considering withdrawal
of CANH should not hesitate to approach the Court of Protection in any case in which
it seems to them to be right to do so”. The opportunity to involve the court is
available whether or not a dispute is apparent, and is of particular benefit
where the decision is a finely balanced one. No one would discourage an
application in any case where it is felt that the assistance of the court would
be valuable. And if a dispute has arisen and cannot be resolved, it must
inevitably be put before the court.
110.
Mr Gordon characterises Lambert as a case about the facts, which
tells us nothing about first principles. He submits, also, that the article 6
argument that he advances was not put to the court in this or any of the other
ECtHR cases. This is not how I see the case of Lambert or the ECtHR
jurisprudence generally. The Lambert decision forms part of a consistent
line of Strasbourg decisions and it tells us, in my view, that the ECtHR does
not regard it as problematic, in principle, that a decision to withhold or
withdraw CANH from patient with a prolonged disorder of consciousness should be
made by a doctor, without obligatory court involvement.
111.
If there be any doubt about the implications of this for the present
case, reference to Burke v The United Kingdom removes it. The ECtHR was
there required to consider our domestic provisions, even before they were
bolstered by the MCA 2005, specifically focusing on the GMC guidance then in
force. Breaches of articles 2, 3, 8 and 14 were alleged, and it was one of the
applicant’s complaints that the GMC guidance failed to spell out a legal
requirement to obtain prior judicial sanction. The ECtHR proceeded upon the
basis that article 2 imposes positive obligations on the State to make
regulations compelling hospitals to adopt appropriate measures for the
protection of their patients’ lives, yet no suggestion was made that such
regulations were lacking in the United Kingdom. The argument that there was
insufficient protection because a doctor might decide to withdraw CANH without
being under an obligation to obtain the approval of the court was expressly
rejected, and I have already cited (see para 33 above) what the ECtHR said in
so doing. Recognising the practical realities, it observed that a “more
stringent legal duty” would be “prescriptively burdensome”, resulting in some
medical staff being “constantly in court”, and “would not necessarily entail
any greater protection”.
112.
As for the Official Solicitor’s article 6 argument, even if that
particular argument was not put before the ECtHR in terms, the question of
hearing rights was an obvious component in the arguments that were advanced in Burke’s
case, and there is no reason to suppose that the outcome would have been
different if there had been a specific article 6 complaint. The same might be
said of Lambert’s case, where article 6 was indeed referred to, but only
by way of a complaint that the doctor who took the decision was not impartial,
not as part of a wider argument that court involvement is required in every
case.
113.
Moreover, I would accept Mr Sachdeva’s argument that what engages
article 6 is a disagreement or a question of law and/or fact in dispute, and
that, in the light of the safeguards to be found in the MCA 2005 and the Code,
together with the professional guidance, there is no basis for the Official
Solicitor’s suggested approach of engaging article 6 by assuming in
every case that there is a dispute.
114.
Of the Official Solicitor’s ECHR arguments, it only remains to deal with
article 14. It is not in point, in the present case, in my view. The analogy
that Mr Gordon seeks to draw between someone in Mr Y’s position and a person
with capacity who seeks assistance in bringing his or her life to an end is not
a proper analogy. There is, as Mr Sachdeva says, a critical distinction in both
the domestic and the Strasbourg jurisprudence, between an act which constitutes
the intentional taking of life and therapeutic abstention from treatment. We
are presently dealing with the latter, whereas assisted dying concerns the
former. It is worth observing also that an article 14 argument was advanced in Burke’s
case before the ECtHR and was rejected as manifestly ill-founded. The argument
was to the effect that the applicant was treated less favourably on account of
his disease than others who need CANH but are not suffering from a disease that
causes them to lose competence to influence their treatment. The court observed
that neither a competent nor an incompetent patient can require a doctor to
give treatment that the doctor considers is not clinically justified, thus no
difference of treatment arises. In so far as a competent patient is able to
participate in the consultation process and an incompetent patient is not, the
court said that the patients are not in a relatively similar situation.
115.
It remains to stand back from this intense focus upon the law, in order
to consider the issue in its wider setting. In so doing, it is necessary to
exercise the restraint that is required of a court when it ventures into areas
of social and ethical uncertainty, and especially when it does so in the
abstract, setting out views which will be of general application (as is
necessarily so in this case) rather than resolving a clearly defined issue of
law or fact that has arisen between the litigants appearing before it. Lord
Goff remarked, in the passage at p 871 of the Bland case which I have
set out at para 22 above, upon how frequently doctors have to make decisions
which may affect the continued survival of their patients, and how experienced
they are in this respect. Judges have also developed experience in dealing with
life and death decisions, but it is experience of a different sort from that of
the medical team which actually treats the patient, and of the professional
bodies responsible for regulating and guiding them, and this limitation must be
recognised and taken into account. It has been of particular assistance to
have, from the written submissions of the intervenors, an insight into the
practicalities of caring for patients who are critically ill, and also some
idea of the large number of patients who might be affected in some way by the
decision in the instant case.
116.
It is important to acknowledge that CANH is more readily perceived as
basic care than, say, artificial ventilation or the administration of
antibiotics, and withholding or withdrawing it can therefore cause some people
a greater unease. However, it was decided as far back as the Bland case that
CANH is in fact to be seen as medical treatment. It is not easy to explain,
therefore, why it should be treated differently from other forms of
life-sustaining treatment, and yet that is the consequence of the legal
position for which the Official Solicitor contends.
117.
Furthermore, the Official Solicitor’s focus is on only one sub-set of
patients who are, for one reason or another, unable to take their own decisions
about their medical care and in respect of whom life-sustaining treatment is under
consideration. This is a point that Peter Jackson J made in In re M
(Incapacitated Person: Withdrawal of Treatment), and it emerges with some
force from the written submissions of the BMA and of the ICS and the FICM. It
is not only those, such as Mr Y, who suffer an acute episode and are then
stabilised, who may require CANH. The need for it can arise also, for example,
in the advanced stages of a degenerative neurological condition such as
Huntington’s disease or multiple sclerosis, or in the advanced stages of
dementia, where there may be a recognised downward trajectory. Presently, the
BMA say, in the case of patients who have suffered a severe stroke, or are
significantly cognitively impaired but conscious, or are suffering from a
degenerative neurological condition or other condition with a recognised
downward trajectory, decisions to withhold or withdraw CANH are made on a
regular basis without recourse to the courts. The BMA can see no principled or
logical reason for requiring court review in relation to patients with PVS and
MCS but not for a patient with a different condition. Similarly, it can find no
logical reason why one form of medical treatment, CANH, is treated differently
from other forms of medical treatment such as artificial ventilation.
118.
The submissions of the ICS and FICM are illuminating as to what occurs
in units delivering critical care to patients. Most admissions to such units
occur as an emergency, without the patient having made any advance decision
about treatment, and possibly already so unwell that he or she has impaired
consciousness or is unable to communicate wishes. Most decisions relating to
medical treatment in the critical care setting, including as to whether
life-sustaining treatment is withheld or withdrawn, have to be made without the
participation of the patient. They are, we are told, “almost invariably taken
on the basis of (in England & Wales) best interests and (in Scotland)
benefit, on the basis of consensual decision-making as between the clinical
team and the patient’s family and carers”. In that critical care setting, CANH
is not considered differently from any other form of life-sustaining treatment.
This is said to reflect “the reality in critically ill patients that it is the
withdrawal of invasive or non-invasive ventilation, vasoactive medical and
renal replacement therapy, and the ‘double effect’ from administration of
medications to ensure patient comfort towards the end of life, that leads to
the natural death of the patient, rather than cessation of CANH.” It is likely,
where CANH is withdrawn from a patient who is clinically stable but suffering
from a prolonged disorder of consciousness, that death will result from the
withdrawal of CANH, so to this extent there is a difference between the two groups
of patients. However, once CANH is seen as medical treatment, there is a
parallel between the cases.
119.
In any event, I have difficulty in accepting that there are readily
apparent and watertight categories of patient, with PDOC patients clearly
differentiated from, say, patients with a degenerative neurological condition
or critically ill patients, in such a way as to justify judicial involvement
being required for the PDOC patients but not for the others. The dilemmas
facing the medical team and those close to the patient may well be very similar
in each of these cases. It would be a mistake to think, for example, that the
intensive care doctor simply does whatever is necessary to stop the patient
dying, no matter what the cost to the patient, any more than does the doctor
looking after a PDOC patient or the stroke patient or the patient with
Huntington’s disease. In all of these cases, the medical team take their
decisions as to treatment, whether it is CANH, or some other form of treatment
such as artificial ventilation or cardio-pulmonary resuscitation or the
administration of antibiotics, by determining what is in the patient’s best
interests. In so doing, the doctors will often have difficult diagnoses to
make, reaching a prognosis may be challenging, and the evaluation of the
patient’s best interests may not be entirely straightforward. All these tasks
may call for considerable professional skill and individual judgement.
120.
Furthermore, although the Official Solicitor submits that it should be
possible, with proper case management, to obtain a decision from the court
speedily, giving an example of a case which was concluded within eight weeks, I
fear that that is an over-optimistic view of the situation. I note that even in
that case, the delay would have been about six weeks longer had it not been for
the parties shortening their time estimate (it would seem in part by removing
from it the time for the judge to prepare the judgment) and another case coming
out of the judge’s list. Even allowing for Peter Jackson J to have
over-estimated the precise period of delay in obtaining an order in In re M
(Incapacitated Person: Withdrawal of Treatment), the facts of that case
exemplify the dangers. The pressure of business in the courts charged with
handling such cases is significant and delays are almost inevitable.
121.
As King LJ observed in In re Briggs, quite apart from the
pressure that court cases place on the overstretched resources of NHS trusts,
they add greatly to the strain on families facing acutely distressing
decisions. In a case where all the proper procedures have been observed and
there is no doubt about what is in the best interests of the patient, there is
much to be said for enabling the family and the patient to spend their last
days together without the burden and distraction, and possibly expense, of
court proceedings. In addition, I do not disagree with Peter Jackson J’s
observation that there is a risk that the need to go to court might deflect
clinicians and families from making true best interests decisions and might
lead in some cases to inappropriate treatment continuing by default. Equally,
it is not inconceivable that it might, as the BMA suggest, generate a
reluctance, in some cases, to start CANH because of the procedures attending
its withdrawal.
122.
The Official Solicitor submits that the challenges of diagnosis have
increased since the Bland case, rather than the way becoming clearer as
might have been expected. The difficulties in diagnosis are underlined in the
submissions of the intervenors, “Care Not Killing”, and the report of Professor
Sturman which accompanies them, but are also apparent from other material
available to us.
123.
Medical science, continually developing, cannot always provide answers,
and greater knowledge can produce yet more questions. Developments in this area
of medicine include the ability to differentiate between vegetative state and
minimally conscious state, and improvement in the outcomes for some individual
patients. These changes inevitably create new challenges of diagnosis and
management, new uncertainties, for the medical profession.
124.
The situation is not, however, on a par with that which faced the House
of Lords in the Bland case. The survival of patients such as Anthony
Bland, then so unprecedented, is now a well-established feature of medical
practice. The documentation supplied to us shows that the difficulty that there
is in assessing the patient and in evaluating his or her best interests is well
recognised. The process is the subject of proper professional guidance,
covering vitally important matters such as the involvement in the
decision-making process of a doctor with specialist knowledge of prolonged
disorders of consciousness, and the obtaining of a second opinion from a senior
independent clinician with no prior involvement in the patient’s care. The
second opinion, as contemplated in the guidance (see paras 79 and 80 above, for
example), is, in my view, a crucial part of the scrutiny that is essential for
decisions of this sort, and the guidance sets parameters which should ensure
that it is an effective check, in that the clinician who provides the second
opinion must (so far as reasonably practical in the circumstances of the case)
be external to the organisation caring for the patient, and is expected to
carry out his or her own examination of the patient, consider and evaluate the
medical records, review information about the patient’s best interests, and
make his or her own judgement as to whether the decision to withdraw (or not to
start) CANH is in the best interests of the patient. Thus the interests of
patients and their families are safeguarded, as far as possible, against errors
in diagnosis and evaluation, premature decisions, and local variations in
practice.
125.
If, at the end of the medical process, it is apparent that the way
forward is finely balanced, or there is a difference of medical opinion, or a
lack of agreement to a proposed course of action from those with an interest in
the patient’s welfare, a court application can and should be made. As the
decisions of the ECtHR underline, this possibility of approaching a court in
the event of doubts as to the best interests of the patient is an essential
part of the protection of human rights. The assessments, evaluations and
opinions assembled as part of the medical process will then form the core of
the material available to the judge, together with such further expert and
other evidence as may need to be placed before the court at that stage.
126.
In conclusion, having looked at the issue in its wider context as well
as from a narrower legal perspective, I do not consider that it has been
established that the common law or the ECHR, in combination or separately, give
rise to the mandatory requirement, for which the Official Solicitor contends,
to involve the court to decide upon the best interests of every patient with a
prolonged disorder of consciousness before CANH can be withdrawn. If the
provisions of the MCA 2005 are followed and the relevant guidance observed, and
if there is agreement upon what is in the best interests of the patient, the
patient may be treated in accordance with that agreement without application to
the court. I would therefore dismiss the appeal. In so doing, however, I would
emphasise that, although application to court is not necessary in every case,
there will undoubtedly be cases in which an application will be required (or
desirable) because of the particular circumstances that appertain, and there
should be no reticence about involving the court in such cases.