Friday, May 22, 2009

Palliative care & eating disorders

The International Journal of Eating Disorders has a case report and discussion of a patient with refractory anorexia nervosa who died receiving hospice care. This is one fascinating case report. The case, to summarize briefly, involved a young woman with a long history of anorexia nervosa, refractory to all attempts at treatment (including involuntary/forced treatment) who apparently also was not deemed a candidate for forced guardianship (the hospital's legal counsel advised she would not meet requirements to be declared incompetent).

This is how they describe the ethics committee's response to the case:

The committee’s members struggled to understand how one could die from a psychiatric illness (other than by suicide or unintentional overdose) and were not sure how to proceed. Although they could delineate the differences between acute mental health risks such as suicide, drug overdoses, psychosis or self-neglect, they had no points of reference regarding how to manage a patient who was chronically a danger to herself, unwilling to engage in further treatments, and unresponsive to all prior attempts to treat her involuntarily. The only examples the committee raised for comparison concerned drug users who received heart valve replacements, yet continued to use, knowing that such ongoing use would kill them. In such cases, if a high risk of ongoing subsequent IV drug use was suspected ahead of time, the decision was often made not to provide valve replacements, but there was no forced treatment.
This is how they presented what palliative care for anorexia nervosa would look like to the patient (italics mine):
If she chose to pursue treatment she would be assisted, but the staff would not force her into any involuntary placements or impose any treatment she did not want. There would be no weigh-ins, no calorie or exercise monitoring, no IM medications and no required therapy sessions. She would be offered outpatient therapy only as she felt desirable and necessary. Psychiatric medications would be prescribed as the patient deemed necessary to help manage depression, anxiety and insomnia. The patient would receive weekly visits from a palliative care nurse, who would work with her to manage her symptoms and keep her comfortable. The patient agreed to no further hospitalizations, but did not fully agree with the plan for ‘‘palliative care’’ since she did not believe she was going to die.
The patient basically continued her illness behaviors, got weaker/sicker, and was eventually enrolled in an inpatient hospice where she died.

Some observations.
  1. AN is clearly at times a terminal illness, refractory to all attempts to reverse it.
  2. In this case it was clear that the patient's life could have been prolonged although only with forced treatment. It was the opinion of her physicians that such forced treatment, while life-prolonging, would not 'cure' her AN (for some patients a trial, or many trials, of forced nutritional treatment along with psychiatric care gets them to the point at which they are willing to continue with voluntary treatment and can have a durable response; it was felt this would never happen with this patient). Thus the decision came down to trying to force further involuntary treatment vs. letting the disease run its natural course with her inevitably dying.
  3. I found it interesting that they did not feel there was enough of a chance she'd be considered incompetent that they didn't even put her through the court process. Her statement that she did not think she would die (and it seems she continued that belief until the end, and persisted at least until she was enrolled in hospice in saying that she in fact wanted to live) seems to me to indicate such a fundamental lack of insight into her condition that I'm not sure I believe that. Granted, I'm not too familiar with criteria for declaring someone incompetent on psychiatric grounds, but I assume it has something to do with one's mental illness being such that one cannot even take in basic medical information.
  4. That said, and even if she was legally stripped of her decision-making rights, for situations in which even involuntary treatment would not work long-term, is it right to force patients to do that? In this situation they concluded No, and made plans accordingly, which seemed to work as well as could be expected under the circumstances.
I have had, thankfully, only minimal involvement as a palliative doc with patients with refractory eating disorders. And while #1 is certainly true, these cases stick in your gut a little more than, say, refractory CHF or whatever. Part of that has to do with it being psychiatric illness, as opposed to medical, and the at least visceral differences that creates. I think it also has to do with the very fact that the illness precludes a patient from from having 'normal' insight and ability to make decisions, etc.: that's the very nature of the disease.... Youth, potential loss of decades of vitality, and the fact that there's a tiny chance that stripping a patient of all rights and forcing treatment for a long time might end up working, make it all the more distressing. I wonder how the hospice providers handled her care, emotionally?

And what if this was refractory depression, and a patient was suicidal? Depression can certainly be a terminal illness, and it certainly can become refractory to all treatments (drugs, involuntary committment, electroconvulsive therapy, etc. etc.); we are not offering them hospice care or 'palliative care.' Which I'm fine with (I'm not really sure what that would mean anyway other than not forcing treatment or stopping a patient from committing suicide), and part of this comes down to the difference between 'active suicide' from one's refractory depression vs. 'passively "allowing" oneself to die from an eating disorder.' But I think these cases really push these distinctions we make - make us really examine them. If the choice was permanent involuntary committment and ongoing ECT, when do you decide enough is enough? That rarely happens of course because patients either get better or commit suicide (given that long-standing involuntary committment is rare/unrealistic/often unable to be provided for financial or regulatory reasons for depressed patients).

Much more commonly than eating disorders I care for patients with other mental illnesses (such as schizophrenia with refractory symptoms/inability to comply with treatments despite efforts to control the schizophrenia) which preclude them from receiving what would otherwise be life-prolonging care (e.g. chemotherapy, dialysis, whatever). In these cases I tell my trainees what the patient is really acutely dying from is the schizophrenia, as it is precluding them from receiving life-prolonging treatment. That aside, while these cases are tough and tragic, I'm quite comfortable with them as long as everyone is in agreement that there's no reasonable alternative to providing life-prolonging treatment other than forcing it upon a patient who cannot understand it and could not receive it without ugly/inhumane restrictions (forced hospitalization, restraints, whatever). I'm asking myself why these eating disorder cases feel different to me and I wonder that, despite my flippant statement above that the patient is 'really dying of shizophrenia,' the difference to me is that they're also really dying of cancer, or renal failure, etc. as opposed to this case in which this young woman was dying, solely, of her mental illness...?

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