A question from my friend, Marcella.
“I have been asked to comment on the feeling of carers about palliative care and “treatment resistant anorexia”. My first thought is that Anorexia Nervosa is always pretty treatment resistant but that that doesn’t mean that those who suffer from it are beyond hope and actually want to suffer so, far from it. The question is how best to get round the perniciousness of the illness and treat the person. Early intervention is the holy grail, much lauded and rightly encouraged, but what about those who don’t get it, or for whom it doesn’t work. I would welcome your thoughts both on the question of palliative care, and on the more pertinent question (in my opinion) of how to avoid people needing it.”
Broken down as follows:
What would you want clinicians to take into account if someone is [openly] refusing to accept treatment (presumably before imposing treatment)
I would be very cautious about “refusal” to accept treatment. We really have to discuss mental capacity here:
“Individuals may have an inherent physical condition which prevents them from achieving the normal levels of performance expected from persons of comparable age, or their inability to match current levels of performance may be caused by contracting an illness. Whatever the cause, if the resulting condition is such that individuals cannot care for themselves, or may act in ways that are against their interests, those persons are vulnerable through dependency and require the protection of the state against the risks of abuse or exploitation. Hence, any agreements that were made are voidable, and a court may declare that person a ward of the state and grant power of attorney to an appointed legal guardian.
In England and Wales, this is a specific function of the Court of Protection, and all matters concerning persons who have lost, or expect soon to lose, mental capacity are regulated under theMental Capacity Act 2005. This makes provision for lasting powers of attorney under which decisions about the health, welfare and financial assets of a person who has lost capacity may be dealt with in that person’s interests.”
We also have to discuss alexithymia
“Alexithymia is considered to be a personality trait that places individuals at risk for other medical and psychiatric disorders while reducing the likelihood that these individuals will respond to conventional treatments for the other conditions.Alexithymia is not classified as a mental disorder in the DSM-IV. It is a dimensional personality trait that varies in severity from person to person.
Alexithymia is defined by:
difficulty identifying feelings and distinguishing between feelings and the bodily sensations of emotional arousal
difficulty describing feelings to other people
constricted imaginal processes, as evidenced by a scarcity of fantasies
a stimulus-bound, externally oriented cognitive style.”
“Anosognosia is a condition in which a person who suffers disability seems unaware of the existence of his or her disability. Unlikedenial, which is a psychological defence mechanism, anosognosia is rooted in physiology (for example, damage to the frontal or parietal lobe due to illness and disease). This may include unawareness of quite dramatic impairments, such as blindness or paralysis”
We need to explore at what precise level of malnutrition an INDIVIDUAL (as it differs from person to person) is still rational, in the legal sense of the word and capable of making a decision about their welfare. Many many eating disorder patients are sectioned under the Mental Health Act. Why do some patients get sectioned and are deemed “at risk”, whilst others, who in the cases we are talking about, are deemed rational and capable of making a decision? Somebody, somewhere has to make their mind up about whether anorexia is a mental illness or whether it is a life-style choice. This constant shilly-shallying around the issue and the blurring of the lines about what anorexia nervosa actually IS and whether someone who is very malnourised is “in their right mind” does nothing to help the patient, the clinician or the parent/carer.
I would want a clinician to take into account that often someone with anorexia can outargue God and appears very “rational”. However severe and prolonged malnutrition affects cognitive function. The patient’s wishes, whilst appearing valid, may not be anything of the sort, due to the long term effects of malnutrition on brain function (see Janet Treasure et al)
What you would consider treatment resistant anorexia to be?
A failure on behalf of the treatment team.
How family members and carers can best be involved?
A quote from Gill Todd: (thanks, Marcella) “From my experience of working with carers the ideal service needs to be easy to access and quick to respond and have a clear communication system that both informs and supports all those who are caring for the person in any capacity. Services need to understand the stress caused because of living with someone who you are afraid may die”.
My list goes on and on: support, hope, peer-to-peer interaction, kindness, exoneration from blame, clear explanation of anorexia is AND isn’t, etc etc etc.
Whether it is acceptable to offer someone palliative care, keeping an individual pain free rather than offering active treatment for their condition?< In my opinion, anorexia nervosa is treatable. If someone has been neglected to the point that they are needing palliative care, they have been let down. There are others who believe this is a treatable illness. There has been a lot of comments on this paper. Who am I to argue with the President of the AED?
Death is a preventable outcome of eating disorders and may be secondary to lack of awareness, knowledge or timely treatment; yet it would seem that paediatric medical and mental health services are sometimes ill-equipped to meet the challenges of young patients presenting with eating disorders, especially acutely. 50% of children less than 13- years old are hospitalized early in their illness(2) and numbers of children under 14 hospitalized for eating disorders has risen over the past 10 years(HES data). A recent survey of on-call paediatric registrars in hospitals in England and Wales revealed poor knowledge of the acute management of children with eating disorders(submitted for publication). Most were unaware of the frequent cardiovascular complications and unable to outline the complications of re-feeding syndrome.
- Lee D Hudson, Paediatrician
- Dasha E Nicholls, Andrew Kennedy, Debra K Katzman UCL Institute of Child Health
Or put another way, The Fairy Blogmother’s answer.