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England and Wales Court of Protection Decisions |
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You are here: BAILII >> Databases >> England and Wales Court of Protection Decisions >> NHS Cumbria CCG v Rushton [2018] EWCOP 41 (21 December 2018) URL: http://www.bailii.org/ew/cases/EWCOP/2018/41.html Cite as: [2018] EWCOP 41 |
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Neutral Citation Number: [2018] EWCOP 41
Case No: 1334554T
IN THE COURT OF PROTECTION
Royal Courts of Justice
Strand, London, WC2A 2LL
Date: 21/12/2018
Before :
THE HONOURABLE MR JUSTICE HAYDEN
VICE PRESIDENT OF THE COURT OF PROTECTION
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Between :
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NHS Cumbria CCG |
Applicant |
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- and - |
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Mrs Jillian Rushton By her litigation friend, the Official Solicitor |
1 st Respondent |
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- and - |
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Mr Tim Rushton |
2 nd Respondent |
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Ms Bridget Dolan QC (instructed by Ward Hadaway, Newcastle ) for the Applicant
Ms Fiona Paterson (instructed by the Official Solicitor ) for the 1 st Respondent
Hearing dates: 21 December 2018
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Approved Judgment
I direct that pursuant to CPR PD 39A para 6.1 no official shorthand note shall be taken of this Judgment and that copies of this version as handed down may be treated as authentic.
.............................
THE HONOURABLE MR JUSTICE HAYDEN
This judgment was delivered in open court.
The Honourable Mr Justice Hayden :
1. This is an application regarding the proposed withdrawal of clinically assisted nutrition and hydration in respect of Mrs Jillian Rushton, who is now 85 years of age. Since sustaining a traumatic head injury in December 2015, Mrs Rushton has suffered from a prolonged period of disorder of consciousness. Insofar as a label is relevant, the consensus of medical opinion, in respect of which there is no dissent at all, is that she is in a persistent vegetative state (PVS). In their recent guidance, ‘Clinically-assisted nutrition and hydration (CANH) and adults who lack the capacity to consent’ , the Royal College of Physicians and the British Medical Association have noted that the importance of obtaining a precise and definitive diagnosis has reduced. It is recognised by the Courts and clinicians that drawing a firm distinction between vegetative state and minimally conscious state is frequently both artificial and unnecessary. In practice, when assessing best interests, information about the patient’s current condition and prognosis for functional recovery and the level of confidence with which these can be evaluated is invariably of greater importance than a precise diagnosis.
7. When her husband died she struggled on as best she could, keeping as busy as possible. Although there were times, at family gatherings surrounded by her sons and grandchildren, when the sunshine came back into her life, the reality appears to have been as her son, Hugh, told me so eloquently, that after her husband’s death, “ the sweetness went out of her life .”
24 Advance decisions to refuse treatment: general
(1)"Advance decision" means a decision made by a person ("P"), after he has reached 18 and when he has capacity to do so, that if–
(a) at a later time and in such circumstances as he may specify, a specified treatment is proposed to be carried out or continued by a person providing health care for him, and
(b) at that time he lacks capacity to consent to the carrying out or continuation of the treatment,
the specified treatment is not to be carried out or continued.
(2)For the purposes of subsection (1)(a), a decision may be regarded as specifying a treatment or circumstances even though expressed in layman's terms.
(3) P may withdraw or alter an advance decision at any time when he has capacity to do so.
(4) A withdrawal (including a partial withdrawal) need not be in writing.
(5) An alteration of an advance decision need not be in writing (unless section 25(5) applies in relation to the decision resulting from the alteration).
25 Validity and applicability of advance decisions
(1) An advance decision does not affect the liability which a person may incur
for carrying out or continuing a treatment in relation to P unless the decision is at the material time–
(a) valid, and
(b) applicable to the treatment.
(2) An advance decision is not valid if P–
(a) has withdrawn the decision at a time when he had capacity to do so,
(b) has, under a lasting power of attorney created after the advance decision was made, conferred authority on the donee (or, if more than one, any of them) to give or refuse consent to the treatment to which the advance decision relates, or
(c) has done anything else clearly inconsistent with the advance decision remaining his fixed decision.
(3) An advance decision is not applicable to the treatment in question if at the material time P has capacity to give or refuse consent to it.
(4) An advance decision is not applicable to the treatment in question if–
(a) that treatment is not the treatment specified in the advance decision,
(b) any circumstances specified in the advance decision are absent, or
(c) there are reasonable grounds for believing that circumstances exist which P did not anticipate at the time of the advance decision and which would have affected his decision had he anticipated them.
(5) An advance decision is not applicable to life-sustaining treatment unless–
(a) the decision is verified by a statement by P to the effect that it is to apply to that treatment even if life is at risk, and
(b) the decision and statement comply with subsection
(6) A decision or statement complies with this subsection only if–
(a) it is in writing,
(b) it is signed by P or by another person in P's presence and by P's direction,
(c) the signature is made or acknowledged by P in the presence of a witness, and
(d) the witness signs it, or acknowledges his signature, in P's presence.
(7) The existence of any lasting power of attorney other than one of a description mentioned in subsection (2)(b) does not prevent the advance decision from being regarded as valid and applicable.
14. The force of the advanced decision is given effect by s.26 MCA 2005 in these terms:
(1) If P has made an advance decision which is–
(a) valid, and
(b) applicable to a treatment,
the decision has effect as if he had made it, and had had capacity to make it, at the time when the question arises whether the treatment should be carried out or continued.
(2) A person does not incur liability for carrying out or continuing the treatment unless, at the time, he is satisfied that an advance decision exists which is valid and applicable to the treatment.
(3) A person does not incur liability for the consequences of withholding or withdrawing a treatment from P if, at the time, he reasonably believes that an advance decision exists which is valid and applicable to the treatment.
(4) The court may make a declaration as to whether an advance decision–
(a) exists;
(b) is valid;
(c) is applicable to a treatment.
(5) Nothing in an apparent advance decision stops a person–
(a) providing life-sustaining treatment, or
(b) doing any act he reasonably believes to be necessary to prevent a serious deterioration in P's condition, while a decision as respects any relevant issue is sought from the court.
Mrs Rushton’s document is an important one and must be approached with care, recognising the importance of the statutory safeguards. It is inevitable that, even with some medical knowledge, Mrs Rushton could not have foreseen all medical eventualities or have anticipated with accuracy the circumstances in which she ultimately found herself.
15. At chapter 9 of the Code of Practice, there is set out important guidance and non-exhaustive criteria intended to illuminate best practice. These have already been subject to judicial endorsement in, for example, the case of X Primary Care Trust v XB [2012] EWHC 1390 Fam . In particular, chapter 9, whilst emphasising there is no set form, indicates that it is helpful to include specific information. Firstly, and obviously, the full details of the maker of the document need to be included. Secondly, and this in my view is of paramount importance, the name and address of the general practitioner should be identified and further, it should be specified whether they are to be sent a copy of the document. Thirdly, the document should indicate that it is to be used if the maker loses mental capacity. Fourthly, a clear statement of the treatment to be refused and the circumstances in which this is to be refused should be set out.
16. At risk of repetition, the core features required are as follows:
i) full details of the person making the advance decision including the date of birth, home address and any distinguishing features;
ii) the name and address of the person's GP and whether they have a copy of the document;
iii) a statement that the document should be used if the person ever lacks capacity to take treatment decisions;
iv) a clear statement of the decision, the treatment to be refused and the circumstances in which the decision will apply;
v) the date the document was written;
vi) the person's signature (or the signature of someone the person has asked to sign on their behalf and in their presence);
vii) the signature of the person witnessing the signature, if there is one.
· They must be put in writing. If the person is unable to write, someone else should write it down for them. For example, a family member can write down the decision on their behalf, or a healthcare professional can record it in the person's healthcare notes.
· The person must sign the advance decision. If they are unable to sign, they can direct someone to sign on their behalf in their presence.
· The person making the decision must sign in the presence of a witness to the signature. The witness must then sign the document in the presence of the person making the advance decision. If the person making the advance decision is unable to sign, the witness can witness them directing someone else to sign on their behalf. The witness must then sign to indicate that they have witnessed the nominated person signing the document in front of the person making the advance decision.
· The advance decision must include a clear, specific written statement from the person making the advance decision that the advance decision is to apply to the specific treatment even if life is at risk.
· If this statement is made at a different time or in a separate document to the advance decision, the person making the advance decision (or someone they have directed to sign) must sign it in the presence of a witness, who must also sign it.
9.25 Section 4(10) states that life-sustaining treatment is treatment which a healthcare professional who is providing care to the person regards as necessary to sustain life. This decision will not just depend on the type of treatment. It will also depend on the circumstances in which the healthcare professional is giving it. For example, in some situations antibiotics may be life-sustaining, but in others they can be used to treat conditions that do not threaten life.
9.26 Artificial nutrition and hydration (ANH) has been recognised as a form of medical treatment. ANH involves using tubes to provide nutrition and fluids to someone who cannot take them by mouth. It bypasses the natural mechanisms that control hunger and thirst and requires clinical monitoring. An advance decision can refuse ANH. Refusing ANH in an advance decision is likely to result in the person's death, if the advance decision is followed.
9.27 It is very important to discuss advance decisions to refuse life-sustaining treatment with a healthcare professional. But it is not compulsory. A healthcare professional will be able to explain:
· what types of treatment may be life-sustaining treatment, and in what circumstances
· the implications and consequences of refusing such treatment (see also paragraph 9.14).
9.28 An advance decision cannot refuse actions that are needed to keep a person comfortable (sometimes called basic or essential care). Examples include warmth, shelter, actions to keep a person clean and the offer of food and water by mouth. Section 5 of the Act allows healthcare professionals to carry out these actions in the best interests of a person who lacks capacity to consent (see chapter 6). An advance decision can refuse artificial nutrition and hydration.
“on collapse, I do not wish to be resuscitated by any means.”
“I am refusing all treatment. Even if my life is at risk as a result.”
22. Addressing the applicability of her decision, she identified her aspiration in these terms:
“in all circumstances of collapse that put my life at risk, this direction is to be applied.”
25. Mrs Rushton’s circumstances do however provide an opportunity for this Court to emphasise the importance of compliance both with the statutory provisions and the Codes of Practice, when preparing an Advance Decision. Manifestly, these are documents of the utmost importance; the statute and the codes provide essential safeguards. They are intending to strike a balance between giving proper respect and recognition to the autonomy of a competent adult and identifying the risk that a person might find himself locked into an advance refusal which he or she might wish to resile from but can no longer do so. The balance is pivoted on the emphasis, in the case of life-sustaining treatment, given to compliance with the form specified by statute and codes. The Court has highlighted the profound consequences of non-compliance with the requirements: W v M and S and A NHS Primary Care Trust [2012] COPLR 222; Re D [2012] COPLR 493.
Date |
Event |
20.11.16 |
JR was assessed by Dr Goldsmith, neurologist who concluded that she was in a minimally conscious state but that “ it is clear that she was dementing prior to the head injury and that this dementing process involved many aspects of brain function. This process would be ongoing. It is with the combination of age, evidence of prior dementing process plus current examination findings that cause me to conclude that her prognosis for any meaningful recover is dismal …” |
17.10.17 |
JR was assessed by Dr Goldsmith:
“The movements that Mrs Rushton now displays are all reflexive and there is no evidence of any conscious interaction. This is a deterioration from last year; although even in November 2016 any evidence of conscious interaction was minimal and one reflects that there is also a background dementing process which would forebode a deterioration in her state in any case…” See lines 99-104 |
5.1.18 |
Instruction to conduct a SMART assessment sent to Karen Elliott from GTE Consultants |
05.03.18- 15.03.18 |
Karen Elliott undertakes a SMART assessment |
15.4.18 |
Ms Elliot’s SMART assessment report provided:
“…She did not demonstrate any behaviours indicating awareness of herself or her environment, but has primarily reflexive responses with some spontaneous but non-purposeful behaviours.
It is understandable how her responses, while non-meaningful, could be interpreted as purposeful. However, through repeated extended assessment, exploration of reported responses and the inclusion of familiar stimuli, I do not believe the responses indicate purpose or awareness…”
|
24.07.18 |
A best interests meeting held involving Mrs Rushton’s three elder sons |
21.9.18 |
Expert in neurorehabilitation instructed by CCG – subsequently notifies CCG that is unable to report promptly and instructions are withdrawn |
18.10.18 |
Professor Wade instructed by CCG |
Late Oct.-early Nov.18 |
Mr T Rushton states that dates offered by Prof Wade to assess JR are not convenient |
14.11.18 |
Proceedings Issued |
07.12.18 |
Professor Wade assesses JR |
9.12.18 |
Professor Wade provides his first report |
11.12.18 |
First Court of Protection directions hearing |
5.1 Clinical assessments
Where patients are in Prolonged Disorder of Consciousness, PDOC, (i.e. for longer than four weeks) following a sudden-onset brain injury, providing accurate prognostic information is a very important part of the decision-making process. Assessing levels of awareness – and in particular the prospect of it increasing – however, is not a simple task and there is no single clinical sign or laboratory test of awareness. Its presence must be deduced from a range of behaviours which indicate that an individual can perceive self and surroundings, frame intentions and interact with others. These observations need to be repeated over a period of time, with specialist analysis of the results. It is essential, therefore, that these patients have a thorough, expert assessment according to the RCP guidelines to provide a detailed evaluation of their level of awareness of themselves or their environment and to record any trajectory towards future recovery or deterioration.
There may be some cases in which there is clear evidence that the findings of detailed assessments will not affect the outcome of the best interests decision because, for example, even the most optimistic prediction of recovery would not constitute a quality of life they would find acceptable. Where this is the case, a decision can be made before these assessments have been completed.
In most cases, while these investigations are being made, careful consideration should be given to reducing or stopping sedating drugs, to ascertain the extent to which they are reducing responsiveness (if at all). This may involve risks, for example of pain or seizures, which can be distressing for those close to the patient. It is crucial that doctors clearly explain the steps they are taking, why they are taking them and what to expect during that time. If withdrawal or reduction of medication is likely to have significant consequences for the patient, the doctor will need to weigh up the balance of benefits and harms between optimal assessment conditions and adequate symptom-control. This will include an assessment of how important a clear diagnosis of permanent VS versus MCS would be for the patient in terms of the best interests assessment.
Diagnosis and prognosis
The perceived importance of obtaining a precise and definitive diagnosis has reduced over time, as it is increasingly recognised, by clinicians and the courts, that drawing a firm distinction between VS and MCS is often artificial and unnecessary. In practice, when assessing best interests, information about the patient’s current condition and prognosis for functional recovery and the level of certainty with which these can be assessed is often more important than achieving a precise diagnosis.
Post Script
I delivered this Judgment, ex-tempore, on 21 December 2018, at the conclusion of the hearing. I delayed its publication to protect Mrs Rushton’s privacy at the end of her life. I have today perfected the judgment (on the principles of Piglowska v Piglowski [1999] UKHL 27 ) and am now placing it in the public domain. As always, in these cases, the hearing took place in open court. At the conclusion of the hearing I indicated that I would delay publication until a month after Mrs Rushton’s death in order to give her family some privacy to grieve. (see M v Press Association [2016] EWCOP 34; V v Associated Newspapers Limited [2016] EWCOP 21; Re S (A child) (Identification: Restrictions on Publication) [2004] UKHL 47. Last week I heard that Mrs Rushton had died. Her family have my condolences.