Optimism, UK/US, palliative care, and getting mom and dad on the same page
Catching you up on my posts over at HealthyPlace:
An audio blog post about "chronic" anorexia and palliative care
An audio blog post about "chronic" anorexia and palliative care
New Optimism for Parents on Causes and Treatment of Eating Disorders
One Parent’s View of Eating Disorders in Two Health Systems
How Eating Disorders, Anorexia and Bulimia, Cause Parental Conflict
Eating Disorders Education For Parents: Learn By Forgetting
Virtual World, But Real Connections
Read your post on parental conflict.ReplyDelete
My husband and I have a very strong marriage, but found that our son's diagnosis of anorexia challenged us in ways I would have never anticipated.
Interestingly, the root of any conflict centered on the topic of agency. I was fully on board with anorexia being an illness, something wrong with the brain, a malfunction. However, my husband, as a professor has had too many student pull the mental illness card - most legit, but some who are working the system. So he has a bad taste for allowing exceptions for any mental illness because he can't tell who is telling the truth. And really, he didn't have much compassion for those who really were suffering.
We've had long drawn out discussions where we disagree about where does agency come into play. This had a lot to do with how he dealt with our son and others.
We've come a long way, though. Just this week he told me about a struggling student. My husband recognized the symptoms of depression and recommended that the student get help and create an official record with the university so that professors could allow accomodations. He dealt with that student with a lot of understanding and compassion instead of judgement. Wow.
sorry your husband had to learn such a hard way, but I'm glad for his students that he did.ReplyDelete
I think Laura may have written that post for me! We're still struggling with parental unity here, but don't waste time fighting over treatment options now especially as arguements are futile in a system which doesn't allow for much choice.
Great post about the different systems, and looking forward to hearing the post on palliative care when I get to a computer with a sound system. There are a few people I'd can already think of forwarding it to, but they might have deaf ears even if they do have sound systems on their computers.
Laura, with regard to your talk on 'chronic anorexia nervosa' and palliative care':ReplyDelete
I admire your tenacity and drive to change the world, but I do feel that you are missing some important points here, and that you have an over-simplistic, and non evidence based viewpoint by attributing ALL of the psychiatric disturbances in patients with long histories of AN to under-nutrition. It is true that under-nutrition causes many/most of the stereotypical behaviours of AN, but a small proportion of anorexic patients, often those who become chronic, have pre-existing psychological or neurological problems that account for some of their symptoms and often their 'demise' into AN.
The point is that these chronic patients have usually been subjected and coerced into treatment MANY times previously - and sometimes have PTSD associated with being detained and coerced. Some (not all) chronic patients have previously been re-fed to 'full nutrition' (difficult as that is to define) and have remained at their re-fed weight for two or more yrs. They later relapse.
An important issue here is QUALITY of life, and also how recovery from AN is defined. You and some others were fortunate to have children with uncomplicated AN - i.e. with no pre-existing mental health/neurological condition, who responded well to home treatment. Your daughter and others who achieved a full recovery might have recovered just as well in a treatment centre - like many other patients do.
What about those rare cases who are healthy and happy at a BMI of (e.g.) 17, which is considered underweight by WHO standards and below the 'cut-off' weight for AN as defined by DSM IV? Are you suggesting these individuals should be force-fed without their consent until they achieve a BMI > 19-20? I wholly agree that people with BMIs that are low enough to be causing physical (and severe mental) damage should be re-fed, possibly through coercion (or more accurately empathetic care) to a level that is compatible with survival, even if their BMI remains only at (e.g.) 16. Some people do have reasonable quality of life at such a BMI, yet if forced to gain more weight are at risk of suicide, as evidenced by previous suicide attempts at higher weights.
BTW, I am not talking of my personal situation here. My BMI is no longer in the underweight category and my physiology has normalised. I am thinking of people I know who live in fear of being carried off to be treated against their will.
I understand your thoughts here. We're dealing with a number of different issues and by nailing one down it often obscures the others.
The only thing re-feeding does is heal the malnourishment. It isn't a miracle cure, and it can't exist out of the context of other care nor can it be offered and then the patient set adrift. If the patient has other psychiatric issues they have to be addressed both for their own sake but also to prevent relapse. Malnourishment makes co-morbid issues worse (like rigidity and obsessiveness and social isolation) and self-medicates others (anxiety, depression, PTSD). My argument is that healing the malnourishment is a necessary if not sufficient element of healing the person and getting them back to freedom.
As I mentioned, repeatedly re-feeding and then throwing patients back to situations where they lose weight is wrong and in fact nurtures chronic illness. I'm advocating refeeding and NOT letting the patient fall backward.
I don't think re-feeding is coersive. I think ED is coersive. I don't think the family and clinicians enforcing nutrition and preventing self-harm is restrictive I think it is freeing the patient from the restrictions of ED.
On a personal level I would say that my daughter was absolutely headed to chronic anorexia and death. I don't think her illness was less severe or less complicated. I think if families were supported in ensuring full brain health and treatment clinics were available at every level of intensity for the times patients cannot comply at home we would see a different illness than we currently do. Would there still be chronic patients, yes. But far fewer. Would I ever give up on those patients and say staying at sub-optimal weight was an appropriate treatment stance? No.
Thanks for the clarification Laura...ReplyDelete
I would never dispute the importance of reversing malnutrition and the associated endocrine, metabolic and physiological disturbances in AN. I have seen for myself how, over the last 4 yrs, significant weight gain has reversed the aforementioned disturbances. Only recently I had a DXA scan that revealed my bone density has risen from severely osteoporotic (5 yrs ago) to a level that it is no longer in the osteoporotic range. That in itself is such a motivator, given that I have previously fractured my pelvis and ribs following a minor fall at low weight.
As far as my mental health goes, I am better in control of my eating and exercise, but I have to work hard at this, especially when my ever raging anxiety becomes so debilitating that I feel 'compelled' to return to anorexic behaviours. But what has helped my mental health most (and I was at one time written off as a chronic patient) has been very regular interaction with a skilled psychiatrist who I have been able to talk to in confidence - about my deepest, darkest fears. He has helped me develop alternative means of coping with emotions that are not self-destructive like AN.
I feel that the biggest problem that many people with often AN face is inadequate follow-up care. There is so much focus on weight - both increasing it, and its use as an apparent indicator of 'recovery'. But what is also important is one's general ability to cope with life + quality of life after weight gain. Some patients do well in hospital, but are then left largely to 'fend for themselves'.
All the emphasis that is placed upon the nutritional component of AN and its presumed genetic and starvation-induced origins can result in a neglecting of important psychological issues that may have triggered or underpinned many of the behaviours. There has been a move away from psychotherapy - yet AN is integrally linked to the self and identity. That, to me, doesn't make sense.