"If I exhibit behaviour seemingly contrary to this advanced directive this should not be viewed as a change of decision."
“After so many years of treatment E still finds it impossible to eat. This is her day-to-day reality. However distorted others might view it to be, it is still her reality. At the meeting in April 2012, all the clinicians that have been involved in E’s care over the last few years met and were all in total agreement that she should proceed down the palliative care pathway. We strongly feel that, five weeks into this pathway, this is an inhumane time to bring this into question, especially for a highly anxious woman. During the last five weeks we have watched our daughter preparing for her death in a very dignified and considered way, with a powerful sense of control over her situation. In this time, she has never faltered from her wish not to be re-fed. We have always gone along with any treatment proposed by either the mental or physical health teams in the hope that she might show signs of "recovery" from her addictions. After 18 years, we have given up on that hope. It upsets us greatly to advocate for our daughter's right to die. We love her dearly but feel that our role should now be to fight for her best interests, which, at this time, we strongly feel should be the right to choose her own pathway, free from restraint and fear of enforced re-feed. We feel that she has suffered enough. She stands no hope of achieving the things that she would value in her life and shows no signs of revising these aspirations. We would plead for E to have some control over what would be the last phase of her life, something she has been denied for many years. For us it is the quality of her life and not the quantity. We want her to be able to die with dignity in safe, warm surroundings with those that love her.”
“E talks about how her "bullet-proof anorexic retreat" is failing her. She needs to find a new foolproof retreat – death. She needs to know she has an exit and has the power to put a stop to things when she wants to. The paradox is how, through her anorexia, she attempts to fortress herself against unwanted invasion and intrusion, and yet in her choice of anorexia, she invites ongoing medical and psychiatric invasion. An example of this is the use of a PEG. The PEG can be seen as a "medical abuse" which links to E's early life experiences. Even her sleep is invaded each night when woken up for nursing procedures. I see it as an unconscious replay of her childhood sexual abuse – where the scenario is in constant repetition with professionals, as it was with her abuser. The only way she feels she can stop it is through death. To be invited to make a decision to have a life, a less than perfect life, a compromised life, is absolutely terrifying for her. She would then have to take some responsibility for her fate rather than being able to remain a powerless victim.”
“It does not feel appropriate to fight with her at this point; the fight itself (e.g. physically preventing access to the NG or PEG tube, vomiting, laxatives, trying to keep awake all the time) or the intervention (restraint, sedation) could hasten her death, as well as denying that the dignity that is so important. Our approach would be to provide all care and support short of force-feeding.”
“It is profoundly difficult in a case as complicated as this to disentangle a patient’s best interest. One cannot help be influenced by the sincerely held view of her two loving parents. However, my long and detailed analysis of her care record indicates that E has remained at a BMI of less than 15 for at least six years. It is widely understood within Eating Disorder Psychiatry that many patients will not recover from the effects of malnutrition unless they have had their BMI increased to 17 or above. The only time that E’s BMI was “forcibly” restored to normal was during her treatment… at the age of 15. It is of note that she went on to complete her A levels and gain a place at medical school in the ensuing years. Although E has been treated at [three named clinics], at no time during these placements has the treatment plan insisted upon consistent weight gain up to a BMI of over 17. Indeed, it is notable that E’s improvement is so marked as her BMI increases towards 15 that she is allowed a greater say in her treatment, with the effect that she has repeatedly, thereafter, defaulted from further weight gain and re-entered a cycle of food avoidance and weight loss. Treatment regimes enforcing weight gain appear, to the outsider, somewhat barbaric. The categorical refusal to ingest calories can only be met with forcible feeding either under physical or chemical restraint. This is harrowing for any patient, but particularly for one who was subjected to extensive childhood sexual abuse. However, one cannot be reassured that a treatment for Anorexia has been “ineffective” unless and until a period of enforced weight restoration has been secured. E’s history shows abundant evidence of partial cooperation with re-feeding, a dramatic improvement in mental state, an increased responsibility for the management of her own diet, and her inability to continue with a programme of weight restoration. Were this a simple case of Anorexia Nervosa with no co-morbidity I would have no hesitation whatsoever in recommending that she receive nutrition in her best interests. E, unfortunately, also suffers from an Alcohol Dependence Syndrome, and Emotionally Unstable Personality Disorder (borderline subtype). The interplay between these three diagnoses is extremely complex. Professor L, in his report, gives a sophisticated argument as to why E is engaging in this repeated pattern of behaviour, the result of which is to lead to repeated cycles of “abuse”
“In terms of E’s Anorexia Nervosa, I would estimate that were she to be re-fed to a BMI of 17 or above and her weight maintained there through the use of the Mental Health Act and/or Community Treatment Orders, she would have, perhaps, a 20-30% chance of full recovery. Although I am not an expert in the field of substance misuse I am well aware that successful treatment for alcohol dependence can occur after many years of dependence and although E’s history of persistent alcohol dependence is unfavourable in terms of prognosis, it should be remembered that this pattern of misuse has occurred on a background of persistent and profound malnutrition. In terms of her personality disorder, should this indeed be the correct diagnosis, these patterns of behaviour can persist for many years despite long periods of psychotherapy. Again, the pattern of behaviour which has led to the formulation of this diagnosis has occurred on the background of persistent and profound malnutrition. Should this pattern of behaviour persist following restoration of weight, there are numerous psychotherapy approaches, including residential, which have proven to be effective in terms of managing this condition, in particular Dialectical Behaviour Therapy (DBT). E’s opiate dependence has been developing over a number of years. She has now reached a point where she is clearly opiate dependent and currently on a clinically supervised maintenance regime. This condition, again, falls outside my sphere of expertise. However, I am well aware of detoxification programmes which could be employed in E’s case involving the controlled withdrawal of her opiate medication and replacement with other forms of analgesia. Subsequently, addiction treatment programmes aimed at enhancing E’s motivation to remain abstinent from harmful substances could be employed and are well recognised as having a significant level of success.”
“That was naive. The reason was, I anticipated seeing in her notes a pattern of engagement with specialist eating disorder services over many years. I would expect a patient like her to be in a specialised unit for 5 of the last 7 years. The difference is that she has not really accessed meaningful treatment in a highly specialist unit like [the specialist hospital]. She hasn’t had her weight restored to BMI 17. Without that I realised I could not be certain at all that it was in her best interests not to receive ANH...”
“When the Court is considering the question of best interests I would draw attention to the fact that I have been repeatedly told by each new expert that this is not a hopeless situation and to refeed E. Each time E has gone through the distress this causes her to be found back in the same situation. With the longevity and severity of her disease I am afraid I am sceptical as to the ability of any specialist to cure E. E has a difficult to treat combination of problems including personality disorder, dependence on drugs and alcohol as well as anorexia. My problem is not whether I can or will refeed E again, but how many times do I take E through the trauma and at what point should it be decided that refeeding is futile? Refeeding E is not easy and contains many risks. I have re-fed her on multiple occasions. I would point out the near certainty that over and above psychological distress that would be caused there are significant life threatening risks to undertaking refeeding. Previously on re-feeding E, she has suffered re-feeding syndrome which is a condition that is induced by starting feeding and has a risk of killing E. It is likely that E will suffer more significant refeeding syndrome on this occasion. In her current state of extremely frailty E may die irrespective of the court deliberations. She would reach many of the MARSIPAN criteria and even ambulance transport to a local intensive care unit would carry significant physical risk. The physical risk is that of heart rhythm problems, heart failure, and malnutrition related complications such as brain or nerve damage. Refeeding E takes a prolonged period of time with significant mental distress to her. She has told me it feels like reliving the abuse she suffered as a child approximately four times every hour.”
“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.”
“However distorted others might view it to be, it is still her reality”