There is a growing body of case law relating to the
treatment of patients with severe anorexia nervosa. I have discussed previous
cases several times on this blog. They include the case of E, the case of X,
and the case of W. There has recently been a fourth, the case of Z.
While all have been heard in the Court of Protection, and
all involve issues relating to capacity to make decisions about treatment, they
also illustrate the extent to which the Mental Health Act and the Mental
Capacity Act intersect. They highlight the limitations the Mental Health Act
may have when dealing with very complex and often intractable mental disorders
like anorexia nervosa.
Z is a 46 year old woman. She has had anorexia nervosa since
the age of 15 years. The Judge notes: “despite the fact that she has been
admitted to hospital on innumerable occasions and received many different
treatments, outpatient support and therapeutic input, it is impossible to
identify any time in her history where Z has made anything which could be
characterised as a sustainable recovery in terms of her weight gain.”
Her physical health has suffered, to the extent that she
has osteoporosis “to such a severe degree that her entire skeleton is
compromised in a way that would otherwise only be seen in the very elderly”. In
October 2016, her Body Mass Index was 9.6 (normal is between 19-25), and in
November 2016 she was detained under Sec.3 MHA.
The Trust bringing the case, Cheshire and Wirral
Partnership NHS Foundation Trust, sought a declaration that Z lacked the
capacity to make decisions about her care and treatment. This was given in the
middle of December 2016, and the Judge concluded that there were three options
open to the treating team. These were:
- “to continue treatment under section 3 of the Mental Health Act 1983 which would involve detention in hospital and naso-gastric feeding under physical restraint until Z’s weight and physical health improved to the point where it would be possible to discharge her.”
- “continuation of feeding, again under section 3 of the Mental Health Act 1983, involving detention in hospital, but the feeding to take place under chemical sedation”
- To “be discharged from the framework of the Mental Health Act 1983 and treated, if she is prepared to engage at all, only on a voluntary basis.”
The Judge concluded that the third option should be
followed, and that Z would therefore be discharged from detention under Sec.3
MHA and would return to live with her parents.
He noted: “Accordingly, the declarations and orders I
make are pursuant to the Mental Capacity Act 2005. That said, I consider that given this
application is heard in the Court of Protection, sitting in the High Court, I
would have had the scope to make the declarations under the Inherent
Jurisdiction.”
Of other three cases, E, X & W, the Judge reached the
same conclusion in the cases of X and W, which was essentially for there to be
no forced treatment. Only in the case of E did the Judge advocate continued
treatment, and I understand that treatment continued for E under Sec.3 of the
Mental Health Act.
So, out of four cases of women with severe anorexia
nervosa (and often with complicating conditions such as alcohol dependency and
emotionally unstable personality disorder) three were essentially allowed to
die. All the cases were deemed to lack the capacity to make decisions about
their treatment, and it was concluded that these decisions were in their best
interests.
What do these cases have to say about anorexia nervosa,
and about the Mental Health Act?
Anorexia nervosa is an insidious and pernicious disorder.
It is notoriously hard to treat. Mortality is high, whatever treatment is
offered. For patients with anorexia serious enough to require inpatient
treatment, less than half experience remission of symptoms after 12 years.
When patients lose weight to the extent that their life
is endangered, treatment has to consist initially of ensuring that they gain weight
and receive adequate nutrition. This often has to take the form of nasogastric
feeding, in other words, inserting nutrition directly into the stomach using a
tube. This is an exceptionally intrusive process, and often restraint of
various forms has to be used. This is difficult and distressing not just for
the patient, but for the doctors and nurses having to administer the treatment.
If the patient refuses to accept lifesaving treatment,
the Mental Health Act (Sec.3, for treatment) may have to be used.
In the longer term, the talking treatments, such as
cognitive behavioural therapy and cognitive analytic therapy, have the best
outcomes. But these therapies can only be given with the consent and
cooperation of the patient, and when they are in a reasonable state of physical
health.
The Judge in the case of Z stated that “decisions of this
nature impose very considerable intellectual and emotional burden on all those
involved.” The majority of the decisions in these cases recognised that the
clinicians involved with these women had reached a point at which the risks of
continuing treatment were not only outweighing the risks of ceasing treatment,
but were also causing unjustifiable distress to the patients and their
relatives.
I am aware of little equivalent case law relating to
other psychiatric disorders. I can only think of the case of C in 2015, a woman
diagnosed with narcissistic personality disorder who did not wish to continue
treatment for the effects of a serious overdose because she had “lost her
sparkle”. There was considerable publicity about this case at the time.
It appears that anorexia nervosa is almost unique in
producing case law relating to the ending of treatment for the effects of
mental disorder. These judgments seem to suggest that there are times when the
Mental Health Act should not be used indiscriminately to preserve and prolong
life, that when all possible treatments for a mental disorder are exhausted, at
least when it comes to anorexia nervosa, such patients should be allowed to
die. The treatment becomes worse than the condition, the treatment becomes
oppressive and disproportionate, and in breach of the patient’s human rights.
AMHP’s will undoubtedly continue to be asked to make
applications for treatment under the MHA for people with anorexia nervosa, but
it is important to weigh up the likelihood that proposed treatment is likely to
have the desired effect, and will not merely serve to prolong the patient’s
suffering and possibly be in breach of the Human Rights Act.
AMHPs will have to continue to be mindful of the psychiatric
opinions informing their decisions. But it may be that referral to the Court of
Protection for opinions relating to ongoing invasive treatment should sometimes
be considered in preference to the Mental Health Act.
Either way, these are not easy decisions to make.
Could I just point out that the judgement for C determined that she had decision making ability in relation to her physical health treatment options and that there was no reason to interference with her autonomy and right to make choices, so is bundling this case with these reported judgments where the relevant persons were found to lack mental capacity a little glib and misleading?
ReplyDelete‘ … out of four cases of women with severe anorexia nervosa (and often with complicating conditions such as alcohol dependency and emotionally unstable personality disorder) three were essentially allowed to die.’
ReplyDeleteI am afraid I think this summary is inaccurate and misleading.
First, you imply but have failed to state clearly whether you know that the people at the centre of the cases have in fact died.
Secondly, though the judgments fully acknowledged that death may have been a possible consequence of the course of action suggested the term ‘essentially allowed’ implies that judgments were callous or dismissive.
In two of the cases, the Court was clear in endorsing the view of expert witnesses that further forced treatment would be futile and that any therapeutic gain would slight and would be offset by real suffering or treatment related damage and would not in any circumstances substantially extend the person’s life.
In the case of Z, the judgment is clear that the process of force feeding might in fact in itself have lead to her death because of her extreme physical frailty. In the case of X, she had cirrhosis of the liver and faced a limited future life span so it was decided that extending her life by a short period by force feeding would be inhumane and would mean her remaining time was marked by indignity and trauma. X was able to convey to the Court that force feeding was particularly difficult for her because the radically invasive process triggered memories of serious violation and sexual abuse. I have no doubt that appropriate palliative care would have been offered to control pain and manage medical complications.
Of the two other cases, it was decided that for E, therapeutic options had not been exhausted so force feeding was recommended as a potential approach for the involved clinicians and the judge made quite clear that for W, the ruling related to the situation at that time and very carefully stated that discharge to the care of her parents did not mean that other therapeutic options were being ruled out in the future. To quote the judgment directly: ‘If she is capable of making any progress, it will not be as an inpatient … ‘It should … be stressed that this is absolutely not a situation where necessary services are being withdrawn from W. No one is giving up on her …’. Further: ‘W and her family are understandably anxious that she will not be readmitted to the unit if she deteriorates. As to that, I stress that in approving the order I am only endorsing the Board's plan in relation to the circumstances as they now exist and for so long as they continue.’
So, for none of these three is a statement eliding the decision not to pursue the single option of forced feeding with the patients being ‘essentially allowed to die’ a fair summary.
This recent article by academic Beverley Clough does not consider the recent case of Z but provides a more detailed summary of the factors considered with nuance and sensitivity by the judges involved in the earlier cases. I’d suggest anyone with an interest might considered this account as a corrective to the view given in the coverage by the mid-market tabloids and elsewhere that the decisions reached were ill-considered or indicated that the patients were being dismissed to their fate.
https://academic.oup.com/medlaw/article/24/3/434/2733272/Anorexia-Capacity-and-Best-Interests-Developments
‘ … Out of four cases of women with severe anorexia nervosa (and often with complicating conditions such as alcohol dependency and emotionally unstable personality disorder) three were essentially allowed to die.’
ReplyDeleteI am afraid I think this summary is inaccurate and misleading.
First, you imply but have failed to state clearly whether you know that the people at the centre of the cases have in fact died.
Secondly, though the judgments fully acknowledge that death may have been a possible consequence of the course of action suggested the term ‘essentially allowed’ implies that judgments were callous or dismissive.
In two of the cases, the Court was clear in endorsing the view of expert witnesses that further forced treatment would be futile and that any therapeutic gain would slight and would be offset by real suffering or treatment related damage and would not in any circumstances substantially extend the person’s life.
In the case of Z, the judgment is clear that the process of force feeding might in fact in itself have lead to her death because of her extreme physical frailty. In the case of X, she had cirrhosis of the liver and faced a limited future life span so it was decided that extending her life by a short period by force feeding would be inhumane and would mean her remaining time was marked by indignity and trauma. X was able to convey to the Court that force feeding was particularly difficult for her because the radically invasive process triggered memories of serious violation and sexual abuse. I have no doubt that appropriate palliative care would have been offered to control pain and manage medical complications.
Of the two other cases, it was decided that for E, therapeutic options had not been exhausted so force feeding was recommended as a potential approach for the involved clinicians and the judge made quite clear that for W, the ruling related to the situation at that time and very carefully stated that discharge to the care of her parents did not mean that other therapeutic options were being ruled out in the future. To quote the judgment directly: ‘If she is capable of making any progress, it will not be as an inpatient … ‘It should … be stressed that this is absolutely not a situation where necessary services are being withdrawn from W. No one is giving up on her …’. Further: ‘W and her family are understandably anxious that she will not be readmitted to the unit if she deteriorates. As to that, I stress that in approving the order I am only endorsing the Board's plan in relation to the circumstances as they now exist and for so long as they continue.’
So, for none of these three is a statement eliding the decision not to pursue the single option of forced feeding with the patients being ‘essentially allowed to die’ a fair summary.
This recent article by academic Beverly Clough does not consider the recent case of Z but provides a more detailed summary of the factors considered with nuance and sensitivity by the judges involved in the earlier cases. I’d suggest anyone with an interest might considered this account as a corrective to the view given in the coverage by the mid-market tabloids and elsewhere that the decisions reached were flippant, ill-considered or indicated that the patients were being dismissed to their fate.
https://academic.oup.com/medlaw/article/24/3/434/2733272/Anorexia-Capacity-and-Best-Interests-Developments
I think you make an interesting point about the phrase "allowed to die". It does seem to put an emotive spin on things. It feels to me about context.
ReplyDelete"...when all possible treatments for a mental disorder are exhausted, at least when it comes to anorexia nervosa, such patients should be allowed to die."
In this context, is "allowing" someone to die more likely to be seen negatively - services giving up, not caring, defeatist, dismissive etc?
What about in context of an elderly person with advanced dementia who is deemed to lack capacity, when life-saving surgery is withheld against their wishes on the grounds that the potential risks and complications far outweigh the chance of recovery and an improved quality of life.
Would "allowing" the death of this person be seen as a kindness, a release, an end to pain etc?
As I understand it, what the court has actually decided is that in the supposed best interest of the cases of the women in question, treatment for anorexia should no longer be enforced.
In the same way that in the case of the elderly person with advanced dementia and failing health, what the court may decide is that in the person's supposed best interest, treatment should not be enforced.
Maybe it's not a point of being "allowed to die" at all.
It does make me think though about the weight of such a decision and whether or not the court (or any professional) should have such power - either to make a decision in someone else's "best interest" or make a decision about their capacity in the first place?
And you would replace those mechanisms of best interest decision making with what? You can't drop something like that and not qualify it.
DeleteI don't know. It was a thought, not a criticism.
ReplyDeleteWhat are your thoughts about the current mechanisms?
I am curious as to why you think that CBT and Cognitive Analytic therapy are the best treatments?.... I have worked psychoanalytically with several patients with severe eating disorders, alcohol problems, a cocktail of meds and psychiatric labels who have had years of in patient treatment and CBT, quite successfully - if CBT or CAT were really all that great patients wouldn't keep presenting for treatment.....
ReplyDelete