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ADVANCE DIRECTIVES
X Primary Care Trust v XB [2012] EWHC 1390 (Fam)
- in one of the few decisions that uphold an advance decision, it's notable that P drafted it in careful consultation with his doctor
- Analysed by Heywood in his article below
NHS Cumbria CCG v Rushton [2018] EWCOP 41
Facts
- The application before Hayden J was for the proposed withdrawal of CANH
from an 85 year old former nurse, Jillian Rushton. She had sustained a traumatic head injury in December 2015, and then was in in prolonged period of disorder of consciousness, lasting 3 years by the time that the case came to be determined. A year before she sustained the head injury,
she had created an ADRT that provided that "on collapse, I do not wish to be resuscitated by any means," that "I am refusing all treatment. Even if my life is at risk as a result," and that "in all circumstances of collapse that put my life at risk, this direction is to be applied."
Held
- Judge allowed treatment to be withdrawn from Rushton, and for her to be moved to a hospice to die
Analysis
- Illustrates the need for a central database

R Heywood, (2015) 'Revisiting advance decision making under the
Mental Capacity Act 2005: a tale of mixed messages' 23 Medical
Law Review 81
Summary
- I found this article very useful!
- He makes an interesting argument that capacity seems to be the control device that judges rely on most frequently to override an advance decision.
o This component is arguably where the bias in favour of life remains most apparent.
o It is possible to argue here that the law does not quite reach an optimum balance
- Elsewhere, however, a more even balance does seem to be struck because once the issue of capacity is decided in favour of the patient, the early indications are that judges will not be disposed to use the safeguards to override an advance decision unless there is substantial evidence in support of their application
- He also analyses several relevant cases after the introduction of the MCA
o Very useful
Abstract
- Whilst most of the existing literature relating to advance decisions has focused on philosophical questions, this article reflects on the significant legal developments that have occurred since the introduction of the
Mental Capacity Act 2005. The article provides a critique of the controversial issues which have emerged within contemporary case law.
1 The focus of the discussion centres on capacity, the interpretation of the safeguards, and the bias towards preservation of life

1. Introduction
- Despite being recently placed on a statutory footing by section 24 of the
Mental Capacity Act 2005, medical advance decision making is not a new concept in English law.
o It was recognised by Lord Goff in F v West Berkshire Health
Authority that one of the limits on necessity, the legal justification for providing treatment without consent in emergency situations,
was the existence of some evidence of a pre-existing wish of the patient, expressed at a time when she was competent, which indicated that she may wish to refuse medical treatment for a particular illness or injury

Proceeding to treat the patient despite this objection would amount to tortious battery and could potentially lead to criminal prosecution
- However, ADs at common law were subject to two strong caveats, the choice of the P had to be clearly established and applicable in the circumstances

Munby J in HE v A Hospital NHS Trust: the burden of proof rested on those who seek to establish the existence and continuing validity and applicability of an advance decision and that, where life is at stake, the evidence must be scrutinised with especial care.
o Michalowski: 'the new legislation as well as the common law apply a bias against the validity or applicability of an advance refusal of lifesaving treatment'.
- While this is true of the common law and the MCA framework, the question is whether this attitude is evidence in the judicial application of the legislation

Thus recent case law since the MCA is especially important
- Within the framework of the Mental Capacity Act 2005, there remain a number of contentious issues which have caused problems for judges when it comes to assessing the validity and applicability of advance decisions.
o Questions concerning capacity, the interpretation of the safeguards which were designed to allow an advance decision to be legitimately overridden, and also the preservation of life, have all emerged as recurring themes in the case law and serve to demonstrate the unsettled nature of the law under the Mental
Capacity Act 2005.
- The article begins by framing the debate and then moves the discussion beyond the consideration of principally philosophical concerns and engages with a number of important practical legal issues.
o The discussion then proceeds to explore the trajectory of the law following the legislative intervention.
o Particular focus is placed on capacity, the interpretation of the safeguards and the preservation of life
- The article concludes by assessing whether or not the continuing bias in favour of preservation of life is as prevalent now as it once was under the common law

2. Background: Framing the Debate
- Advance decisions are usually justified on the basis of autonomy.
o Dworkin argues that respecting autonomy is important because it allows us to construct our own identity; it 'encourages and protects people's general capacity to lead their own lives out of a distinctive 2 --sense of their own character, a sense of what is important to and for them'
o His view of autonomy is thus based on a 'narrative' or 'biographical'
view of an individual human life: the person whom an individual develops into will depend on the autonomous choices he or she makes now.
o If that individual then loses the capacity to make further autonomous decisions, as that period of incapacity is as much a part of their life as any other, then there is no reason why they cannot be responsible for moulding that chapter of their life,
provided they had the prescience to do it while having capacity.
This is referred to by Dworkin as 'precedent autonomy'.
o On this interpretation, the future incompetent person is powerless to overturn a previous decision because they no longer have the capacity for any fresh exercise of autonomy.
Useful to consider the famous Margo example, discussed by Dworkin and analysed by Maclean

Margo is a 54-year-old woman who is suffering from dementia

Despite her illness, she seems incredibly happy in her existence,
demonstrating signs of pleasure from reading the same books, etc

However, Margo, in her previously competent state, drafted an advance decision to refuse life-saving medical treatment should she ever be diagnosed with dementia.
o Margo, in her now demented state, develops a chest infection which requires antibiotic treatment to save her life
The difficulty in M's scenario resides in the fact that whilst she has experiential interests, she has no critical interests.
o She seems to have a happy life which provides and satisfies her experiential interests and therefore the understandable temptation for most doctors may be to ignore the advance decision and treat her.
o Dworkin, however, argues that critical interests ought to be given priority over experiential ones and, as the advance decision is the most convincing evidence of Margo's critical interests, it should be respected and the treatment withheld.
o His view of life as a narrative unity places emphasis on identifying the 'overall shape of the kind of life Margo wants to have led', which is determined by the exercise of precedent autonomy through the use of her advance decision.
Dworkin's view has been criticised

Rebecca Dresser: "his view of life as a coherent narrative is flawed.
It does not take into account the fact that unforeseen events can happen and circumstances can change.
 Some people will simply live life taking each day as it comes and in 'experiencing various life events, including setbacks in their physical and mental functioning, may revise their goals,
values, and definitions of personal well-being'.
 In short, a person's common life theme may simply be to accept and adjust to the changing circumstances that shape her life
 [similar to Maclean's view -> Dworkin's narrative conception does not apply if there is a single traumatic event changes

3 --

someone's life (e.g. traumatic head injury, after which a person's entire personality changes)]
o Moreover, Dresser points to some more pragmatic concerns about precedent autonomy, noting that future-oriented decision making is an 'incomplete form of self-determination
 New information cannot be absorbed into the decisionmaking process for ADs, as they omit a P's participation "at the crucial point when treatment decisions are activated"
o Perhaps the strongest challenge to Dworkin's work is grounded in the personal identity problem. This problem centres on articulating the conditions under which stages of a person's life are stages of the same person or, alternatively, to explain the circumstances which signal the development of a different person
 Parfit endorses a 'Complex View' of personal identity which consists of two relations: psychological connectedness and psychological continuity.
 Psychological connectedness exists over time and to greater or lesser degrees, depending on the extent to which a person continues to hold various psychological features such as memories, intentions, beliefs, and desires.
 Psychological continuity can exist even in the absence of direct psychological connection between two points in time,
as long as between those two points there are overlapping chains of psychological connectedness

On this basis, personal identity can fluctuate over time, which,
potentially, has ramifications for the validity of an AD
 Given that an advance decision is predicated on the notion that the individual it purports to bind in the future is in fact the same moral entity that created it, its authority is undermined if that future individual is actually viewed as a different person.
 Dresser: under this Complex view, the present and future selves might be strongly connected, or there might be no connection at all
Relating this back to M, where a P undergoes a significant change triggered by a condition like dementia, the degree of psychological continuity needed to connect the former competent P to the later incompetent P may be lost

If we consider M to be a new person, it is possible to suggest that the 'old' Margo no longer has the authority to bind the 'new' Margo.
Within
These theoretical debates are not easily resolved and there is no definitive answer as to which view should prevail.
o This, in turn, makes it incredibly difficult for the law to deal with advance decisions
The law seeks to balance out the tensions between the respect for precedent autonomy on the one hand, and, on the other, the need to address a range of other issues, such as the personal identity problem and the need for the law to acknowledge and respect the rights and interests of those patients who lack capacity

Thus, a person has a legal right to draft an AD, but this may be overridden by recourse to a number of safeguards based on the issues considered

4 3. From philosophy to law: the common law and subsequent legislative intervention
- Prior to legislative intervention, there was some authority to suggest that the common law was not only prepared to acknowledge that an advance decision was an acceptable legal instrument to give effect to autonomous choice, but also that it was prepared, in certain circumstances, to enforce them.
-
- For those wishing to use an advance decision to refuse life-saving treatment, it appeared under the common law that they would be held to a higher standard of proof when seeking to establish validity and applicability.
o The advance decision must have been supported by 'convincing'
and 'inherently reliable' evidence and that evidence would be subject to a higher degree of scrutiny from a judge.
o Michalowski: "to scrutinise evidence with special care seem[ed] to amount to scrutinising evidence supporting the continuing validity and applicability of an advance decision with special care, without applying a similar standard of scrutiny to the evidence against its validity'."
o i.e. a modicum of doubt would seem to suffice
- Problems with Munby J's judgement in HE
o Not only is the burden of proof on the P or their representatives,
they also have to meet a higher standard of proof

Heywood: surely it would make more sense to say that the evidence on BOTH SIDES has to be scrutinised with special care, otherwise it would be almost an insurmountable barrier for P or his representatives -. Akin to saying that there is a presumption that any AD (against life saving treatment) is invalid
- Sections 24 and 25 of the Mental Capacity Act 2005 introduced statutory advance decisions.
- S25 provides a range of safeguards that allow any advance decision to be overridden where it is deemed invalid or inapplicable.
o Hence, a decision is not valid if it has been withdrawn at a time when the patient has capacity to do so, or if the patient has done anything inconsistent with the advance decision remaining his fixed decision

Similarly the AD does not apply if the P has capacity

The grounds for declaring a decision inapplicable to the treatment in question are far-reaching and include situations in which the treatment is not the treatment specified in the advance decision,
where any circumstances specified in the advance decision are absent or where there are reasonable grounds for believing that circumstances exist which the patient did not anticipate at the time of making the advance decision
- The MCA aims to strike a balance between precedent autonomy and the preservation of life by defining clearly the requirements for executing an
AD and by specifying explicitly the circumstances in which an AD may be deemed inapplicable and invalid
- There are additional formalities which must be complied with if the advance decision concerns refusal of life-saving treatment: the patient must make this decision in writing and it needs to be witnessed and counter-signed by that witness 5 Given the extra formalities, it might be thought that ADs are less prone to legal dispute and more difficult to overturn (because formalities are clear evidence of intention)
- However, early signs in case law are mixed

4. Developments since the introduction of the MCA 2005
A. Capacity
- The entire premise of an advance decision is that it is made at a time when a patient is competent, and is intended to apply at a future date when that competency is lost.
o Thus, the issue of capacity is central to validity
- The difficulty for judges is that, even though capacity is presumed, they have to assess it retrospectively.
o Given that there could be a considerable time lapse, judges have tended to approach the assessment of capacity cautiously
- This caution is illuminated in The NHS Trust v T
o The case itself was heard under the common law.
o Nonetheless, it is necessary to discuss it here in order to provide the context and to set the scene for the problems which continue to exist in respect of capacity under the MCA
o P suffered from a borderline personality disorder and had a long history of psychiatric treatment.
o She had, on a number of occasions, self-harmed by cutting herself

The consequence of this would be that her blood levels would fall dangerously low, and she would require an emergency blood transfusion

However, in 2004, she created a written and signed advance decision in which she set out her wishes to refuse any blood transfusion on the basis that she was caught in a set of circumstances which were impossible to endure and that her blood was evil and carried evil around her body.
o A letter accompanied the advance decision from her GP in which it was confirmed that the patient understood the nature and consequence of her advance decision and that it may result in her death
- Charles J held that the patient lacked capacity at the time she made the advance decision and therefore it could be overridden.
o This decision was reached despite evidence from two consultants in 2001 (in which a similar incident occurred), and from her GP in 2004, which indicated that the patient retained capacity

Charles J, nevertheless, preferred the evidence of one consultant who reached the opposite conclusion
 Admittedly, his evidence was the most recent among the specialist consultants

However, by Charles J's own admission, the situation in 2004 was virtually identical to that in 2001, and the patient's condition had not significantly changed in the interim.
- Taking the presumption of capacity as the starting point, and adding to that the GP's supporting letter, there was more evidence in favour of the patient in T having capacity at the time she made her advance decision than not.
o Thus, given that the presumption of capacity favours the patient, it seems plausible to suggest that those seeking to disprove capacity o

6 --must be able to present sufficient evidence in order to rebut that presumption on the balance of probabilities

If the judge had assessed the evidence of the consultant who thought Mrs T lacked capacity on the same standard as he did for those who confirmed that she retained it, he might have reached a different conclusion
Also, the legal test for capacity is based on a functional approach ->
emphasis is on ability to understand information, retain it, use or weigh it,
and appreciate the consequences of their choice

There was evidence that the patient's personality disorder had not affected her to the extent that she could not satisfy these requirements at the time she made her advance decision and on one view this evidence was 'convincing' and 'inherently reliable'
One further weakness of the MCA in respect of ADs is epitomised in the recent case of A Local Health Authority v E (arose after MCA)
o P was a 32-year-old woman who suffered extremely severe anorexia nervosa.
o E's death was imminent, yet she was refusing to eat and taking only a small amount of water

E had twice attempted to make an advance decision to refuse treatment. After initially being deemed competent and drafting her first advance decision, the patient was formally detained under the terms of section 3 of the Mental Health Acts of 1983 and 2007.
o There was some confusion about whether in fact she lacked capacity at this time, although it was later confirmed by Jackson J
that E did lack capacity to make the first advance decision

She later demonstrated behaviour that indicated that she may have regained capacity, if indeed she had ever lost it in the first place.
o E then drafted a second formal advance decision, signed and witnessed by her mother and a healthcare professional.
o This was to the effect that if she was close to death she did not want tube feeding or life support, but would accept pain relief and palliative care
Despite the formalities being complied with, and the finding that E had not withdrawn her advance decision, Jackson J held that she did not have the requisite capacity at the time she made the advance decision.
o His view ran contrary to the general consensus of medical opinion surrounding E's condition and he reached this conclusion despite E
having taken advice from her solicitor and independent mental health advocate.
o Jackson J's primary reason for reaching this view was that there was no formal assessment of E's capacity at the time she created the advance decision

There was evidence of doubt as to whether, had it taken place, the findings of any such investigation would have yielded a conclusion in favour of capacity (and this was sufficient to tip the balance)
Amidst the range of formalities in the MCA 2005, there are no mechanisms in place to ensure that a P is competent when they actually draft their AD!
The law tries to strike a balance between greater certainty and clarification, and also ensuring AD making is as accessible as possible

The current legislation tries to reach a compromise by not requiring a formal assessment of capacity at the time, but allowing this to be

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