Last fall, I blogged about palliative care for anorexia nervosa (AN). In light of a recently published article on the topic, and considering how riled up I have become as a result, I believe this subject deserves another post.
An article by Lopez, Yager, and Feinstein entitled Medical Futility and Psychiatry: Palliative Care and Hospice Care as a Last Resort in the Treatment of Refractory Anorexia Nervosa was published in this month’s issue of the International Journal of Eating Disorders. The authors describe a 30-year-old female with an 11-year history of AN who presented in their clinic at an extremely low weight with numerous medical complications. Over the course of her chronic illness, this woman had been through two stints in residential treatment, multiple hospitalizations, and several years of participation in a day treatment program. At the time of intake, she continued to engage in caloric restriction (consuming fewer than 300 calories per day) and exercise compulsions (running 2 hours daily).
The treatment team recommended residential treatment, but the patient was unwilling to go voluntarily and the treatment centers were unwilling to accept her involuntarily. The team concluded that “no viable treatment options existed” and consulted the medical center’s ethics committee.
The patient’s family refused guardianship. When the idea of pursuing court-ordered guardianship was presented, the hospital attorneys rejected it on the grounds that the patient would most likely not meet criteria. In the end, “the treatment team and ethics committee determined that her physical and psychiatric impairments were likely to lead to her death, despite any plausible attempts at aggressive intervention” (p. 373).
A palliative care approach was pursued for this patient, despite her firm belief that she was not going to die. So she continued her extreme caloric restriction, purging, laxative abuse, and compulsive exercise. She sustained numerous stress fractures, abrasions, and bruises from falls while running. Her weight, blood pressure, and heart rate dropped even lower. During this time, she attended regular outpatient therapy sessions, during which her eating disorder was never discussed. She eventually became so weak that she was moved to an inpatient hospice, where she died three weeks later.
What is wrong with this picture? The premature death of a young person is always a heartbreaking tragedy. But when a young person dies from a treatable illness, it is even worse. This patient’s family and treatment team abandoned her in her most desperate time of need. The ethics board washed their hands of her; law did not protect her.
Imagine, now, that this patient suffered from severe mental retardation (MR) instead of AN. A patient with MR would not be permitted to engage in self-injurious behaviors. If she could not eat on her own, her family or her nurse or her homecare worker would prepare her meals and spoon feed her. If she engaged in repetitive physical activities that posed a danger to her health, as many intellectually challenged persons do, she would be restrained for her own safety. If her family were unable or unwilling to provide her with the care she needed, she would be placed in a residential treatment center or a group home or an assisted living facility of some type. The cost of these services, even in the United States, would be subsidized by the government. Allowing a person with MR to starve to death would be considered cruel and inhumane. But for a person with AN, it is OK?
The irony here is overwhelming. Both AN and MR are biologically-based brain disorders which result in an inability to meet one’s basic physical needs. MR is, by definition, a life-long, incurable condition which causes marked impairment in functioning. AN is treatable, and many people recover from it completely. Unlike most people with MR, people with AN are able to form intimate relationships, pursue higher education, have meaningful careers, function independently, and make enormous contributions to society.
We, as a society, have done a great service to those with MR. We have medical ethics, legal guidelines, and government programs to protect them and ensure that their needs are met. They are not offered palliative care. Regardless of their family circumstances and finances, they are offered tremendous support for as long as they need it, which is usually for their entire lives. But with AN, the treatment ends when the insurance runs out. Or when the parents and treatment team are fed up. Or when a judge decides that further treatment isn’t worth it.
For the record, this is not about people with AN being “more worthwhile” than people with MR and therefore “more deserving” of resources. Quite the contrary. I believe that all human beings, regardless of physical or mental illness, disability, race, gender, religion, or sexual orientation, deserve affordable, effective healthcare services throughout their lifespan.
Why is it that we have failed people with chronic AN but served people with MR so well? Because most people in society, and many in my own profession, believe that AN is a choice. No one, not even children, believes that people choose to have MR. Because many treatment professionals believe that AN patients must be motivated to recover, enter treatment willingly, and manage their symptoms on their own. No one waits around for people with MR to become motivated to recover before providing them with services, and no one expects them to manage their issues alone. Because our legal system believes that an adult with a BMI of 10 who runs 15 miles a day and cannot nourish herself is competent to make her own healthcare decisions.
Come on, world. We can do so much better than this.
Out of curiousity, what would you suggest should have been done for this woman? In the paper the possible options were outlined and she refused all voluntary treatment. The parents were unwilling to pursue guardianship.
I guess they could have had her declared incompetent, but even if they had succeeded, where does this leave her after? She almost needed a long term care in a residential facility for a period of years, followed by reintegration into society. However, at SOME POINT she needed to accept responsibility for her own recovery. I guesss the hope is that if she had been weight restored long enough, she eventually would have engaged with her team in the fight for recovery?
I agree that this is an appalling situation and I agree with you that this pallitative care idea makes me sick to my stomach. I don’t see what they could have done beyond incarceration and force-feeding with the eventual hope that she would “see the light.”
Also, the MR comparison, is I guess a tricky one. I have volunteered in respite care facilities and nursing homes and I still think the quality of life of severely MR people and compromised individuals is extremely lacking. An arguement could be made for the quality of life of these individuals too. . .
A:)
Thank you for blogging on this topic and bringing to my attention the article you mention.
However, as a boarded hospice & palliative care physician I disagree with some of the principles of your position and assessment:
1- I have cared for many patients with MR on hospice, and have been part of the decision-making in their transition to hospice and even comfort care. Patients are not denied this type of care simply because they have mental retardation, just as they are nor denied aggressive, life-sustaining interventions when appropriate either.
2- that brings me to the second point: you imply that palliative and hospice care are lesser than or not as good as aggressive, life-sustaining interventions.
The Institute of Healthcare Improvement (not just palliative care docs like me) speak of the right care, at the right time, in the right place – and know how hospice plays a part in that ‘right care.’
Having gotten those points out of the way, the question of the role for hospice for a psychiatric disorder – such as AN, is indeed fascinating and controversial.
Psychiatrists are now becoming board certified in the field to help define and answer that question. Scott Irwin is one such leader in the field, out of San Diego Hospice and Palliative Care.
As a HPM physician and hospice medical director, I remember well a patient admitted with refractory AN. She had tried everything, had lived more in hospital or institution than out.
She had been force-fed with feeding-tubes, had worked diligently with her psychologist(s) and physicians. However, she continued to get worse, bounce back.
She had become tired of that work that so robbed her of meaningful life with friends and family, but also acknowledged and knew that her choice was to be re-institutionalized, likely with a feeding-tube again, kept from family and her home, or to receive nursing care at home – without a feeding tube, from hospice – and under the guidance and direction from her long-standing physicians and psychologists.
Everyone in her care team, including patient and family, had come to acknowledge that her AN had caused permanent damage to her heart and endocrine system, that she was in the early stages of dying.
They all acknowledged that if she were institutionalized and supervised 24/7 with artificial feeding, her life could be prolonged. They also realized that for her, that care would not merely be a transitory step towards recovery, back to what she and her family considered a meaningful life.
Hospice -all agreed, would be the only way to give her care, support, medical management if symptoms in her home where she could live with the people and dreams that gave her joy and meaning for as much time as her body and her illness allow.
Everyone of us dies sometime. Some of us die from cancer or COPD, while others from organ failure due to other underlying illness, such as AN. I am not advocating for hospice for any patient with AN, just because they don’t want to eat.
But there may be a roll for it, some patients with AN, once the disease seems to be refractory to best medical and psychological care.
We all deserve the medical care that will help us fill those final months with meaning, family, dignity, and love even if it means foregoing aggressive interventions that may prolong the beating of our hearts and rise and fall of our lungs.
That privileged choice -in either direction – must not be denied someone for exactly the reasons you state.
A :),
Thanks for your post. You raise an excellent question – what SHOULD have been done for this woman instead?
I think, in order to save this woman’s life and her potentially bright future, she should have been offered high-quality, evidence-based treatment from the moment she was diagnosed. Her family should have been fully informed and actively involved in her care. From the beginning, her treatment team and family should have insisted upon full nutrition and weight restoration to her ideal body weight (not some arbitrary minimum weight), and provided her with all the support she needed to stay at that weight. Once her body and brain healed, she should have received evidence-based psychological interventions to treat her ED symptoms as well as any co-occuring disorders.
I know that, when this woman was first diagnosed, treatment professionals probably did not do any of these things because they didn’t know any better. Heck, many treatment professionals today don’t know any better.
I completely agree with you that she needed to participate in her own recovery at some point. However, patients with AN cannt be expected to participate in their own recovery until they have been weight restored and maintained their weight for about 12 months. Prior to that point, they CANNOT choose to get well, so family and professionals need to choose recovery for them. The point at which she could be expected to participate in her own recovery should have come much later, when she was physically and psychologically able to do so.
And you make a good point about the quality of life for people with MR. I have not worked with this population, so I don’t know much about it. But I definitely do believe that all human beings have a right to high-quality healthcare.
I guess the difficulty is that there is little evidence based treatment for such chronic AN — even if she had been weight restored, where to go with therapy after that remains vague. CBT/DBT have shown some promise, but they are not cure alls. Surely, if Maudsley had been available when she first got ill, that may have helped her, but that isn’t certain either. We don’t know her family situation and there are some cases in which Maudsley is inappropriate (I speak from personal experience).
However, the article addressed what to do at THAT time. I also think that as someone gets older with AN their disease becomes more complex — they are more socially/developmentally delayed, have less basic competency in every-day life skills. She may have needed more than evidenced based therapy to treat THESE anxieties and difficulties. Recall that few interventions are evidence-based.
Lastly, I cannot agree with you about your belief that AN individuals do not think clearly about their situation until they have reached their target weight and maintained for at least 12 months. I relapsed after treatment and reached a BMI of 14.5. Since that time, I sought out a team which I created myself (psychiatrist, psychologist and dietican) and have gained 21lbs over the past two years. I continue to work toward gaining to my target BMI of 20. I have been sick for 6 years now and this was my third relapse. Likewise, I have seen women at very low weights enter traditional treatment and do very well weight restoring and in follow-up.
There is danger in trying to “cookie-cutter” all AN individuals to a psychopathology. The ability to make competent decisions about treatment varies not just by weight, but by individual.
A:)
Dear A,
You’re right, there isn’t any evidence-based treatmet for adults with chronic AN. I really wish there were! I also agree completely that CBT, DBT, and Maudsley are not cure-alls and are not necessarily appropriate for every patient or every family.
I don’t know exactly what should have been done for the patient at the age of 30. I wish I did. I think that, for these patients, there should be some way to provide them with the support needed to weight-restore and maintain weight regardless of their “cooperation,” and they should be provided with CBT or DBT after weight restoration, which as you pointed out has shown some promise in weight-restored AN patients.
I think it is wonderful and heroic that you were able to make healthy decisions and take appropriate steps towards recovery in such a malnourished state. I agree with you that not all patients require 12 months at weight restoration before being mentally competent to own their recovery. I appreciate you pointing out that not everyone takes as long to develop internal motivation. But there are also many, many patients who continue to struggle with ED thoughts and behaviors (including resistance to treatment, which I consider a symptom of AN) for many months post-weight restoration.
As you wisely pointed out, there is danger in a “cookie-cutter” approach to treating AN. That said, there should be some guidelines and standards in place to protect those patients who are the most mentally ill and thus the most resistant to treatment. People such as yourself, who are ready and willing to engage in treatment and work towards their own recovery, are already in a healthier place and don’t require others to make decisions on their behalf.
Susanakm,
Thank you for your response and your very unique perspective. You make some excellent points. I hadn’t thought of this issue in this light before.
I want to clarify that I do not view palliatve care or hospice care as inferior to aggressive life-sustaining interventions. I think that palliative/hospice care is the best option for individuals with end-stage incurable illnesses, when these individuals are cognitively able to make informed healthcare decisions. I just don’t believe that chronic treatment-refractory AN falls into this category. And I believe that many (though not all) people with severe AN are not competent to make healthcare decisions for themselves because resistance to treatment is a symptom of their illness.
The medical profession does not yet know how to cure patients who are dying of certain end-stage cancers or AIDS. Also, most patients with physical illnesses have insight and are generally competent to make palliative care decisions, or have a family member who can do so for them. Palliative /hospice care is the best option in this case. The medical / psychiatric / psychological professions DO know that when AN patients are given the option of choosing recovery or not, of fully nourishing themselves or not, of weight-restoring or not, most of them will choose not. We also know that when patients with AN have no other choice but to consume full nutrition, restore their weight, maintian restored weight, and undergo psychotherapy after weight-restoration, the majority of them can and do recover.
Adolescents with AN are “forced” into treatment by parents all the time, and most of these adolescents, if they receive high-quality evidence-based care, will recover. We just don’t have the measures in place to “force” adults into treatment against their will, even if it means saving their life. If we did, I have no doubt that many adults with chronic, treatment refractory AN would recover.
great post as usual!
Have you read “Slim To None”? It deals with a case like this, and gives the father’s perspective on it. With the so-called “treatment” like what Jennifer got, I would much rather be allowed into a haspice to starve to death.
Yum,
Yes, I have read “Slim to None.” What a horrible story. Unfortunately, you’re right – death certainly seems preferable to such bad treatment.
I completely agree with your points and am so glad you’ve taken this issue on. Having worked with folks with MR and other disabilities for more than 20 years, I do not agree with your statement, “Unlike most people with MR, people with AN are able to form intimate relationships, pursue higher education, have meaningful careers, function independently, and make enormous contributions to society.” People with MR do form intimate relationships, have meaningful careers, function as independently as possible and make meaningful contributions to society.
Annonymous,
Thanks for your response. I appreciate you correcting me about people with MR. I have not worked with this population, so I am not well informed about their capabilities.
I would presume that it really isn’t fair to generalize about all people with MR like I did in my post. Some people with MR can form intimate relationships; others cannot. Some can have careers; others aren’t able to. Some can live independently, and others need life-long assistance. And what constitutes “contributions to society” is subjective.
I had no intention of short-changing people with MR in this post, so I am very sorry that I came across that way. My point was simply to compare two groups of people (AN ad MR) who have special needs resulting from biologically-based brain conditions, and point out the discrepancies in how society views and treats these two groups of people.
I guess eliminating the phrase “unlike people with MR,” or substituting it with “like many individuals with MR,” would have made my point well enough without being inaccurate or insulting.
Thanks again for your post and your corrections.
You say that law did not protect her. What would you have the law do? Declare all people with EDs prima facie incompetent and able to be shoved into residential treatment centers against their will?
I’m sorry this woman died. Yes, this is sad, and yes, it would have been wonderful if she could have gotten meaningful treatment and recovered. Do I think that this woman could have been better served by the professionals in her life? Yes. The care she did receive sounds pathetic at best. But I just don’t think it’s ok to make the leap from this story to the idea all patients with EDs should be forced into treatment, fed against their will, or tied to a bed so they can no longer exercise.
There are many people with EDs, myself included, who are more than capable of participating in their own treatment without having been weight restored and through a forced course of recovery for 12 months. This kind of statement again does a real disservice to ED patients who, surprisingly, do vary from one to the next. Yes, anosognosia is a feature of AN. Yes, patients often have a hard time recognizing or appreciating how ill they are. But that does not mean that they cannot ever recognize this. Nor does it mean that they cannot participate in treatment. And every individual’s insight and ability to participate in treatment is considerably different.
And your analogy to MR has a number of flaws. People with MR vary greatly in their ability to make their own decisions and to care for themselves. Many of them are perfectly capable of functioning on their own and are quite mentally competent to make their own decisions. Like the commentator above said, they form intimate relationships, have meaningful careers, function quite independently and make meaningful contributions to society. I really am disturbed at your assumptions that all people with MR should have their decisions made for them. And then to suggest that we should use the shoddy institutionalization and treatment of people with MR as a model for ED treatment is really chilling. There has been little to applaud in the treatment of people with MR.
Do I have an answer to the problem of adult patients with anorexia who refuse treatment? No. I think it’s a very, very hard situation. But I think automatically assuming people with EDs (or people with any other disability) are incapable of making informed decisions and should have their treatment determined for them is an extremely dangerous position to take. The truth is that I would rather live in a society where some patients with EDs, despite the best attempts of professionals to encourage them into treatment and provide them with evidenced based information about their illness, refuse treatment and die, than to live in a society where someone has the authority to one day decide that I am incompetent solely because of a diagnosis and that I should be strapped to a bed and plied with tubes.
We allow people with treatable illnesses such as diabetes to make the decision to refuse treatment and die if they so choose. And I really think that people with EDs deserve the same dignity. I understand that treatment refusal is a characteristic of EDs and may be symptomatic, not reflective of the person’s actual wishes. But this to me doesn’t mean forced treatment. It means we need to give people with EDs the full range of available information about their illness and make significant and very intensive efforts to help them engage in treatment, and if in the end, they do not, we need to respect that.
And honestly, I’m just really, really tired of the constant infantilization of people with EDs.
I read the case study. The part that haunted me the most was that the patient truly believed that she was not going to die!
Jessie — thank you. That is exactly what I was trying to say, but I think you made the point much more eloquently.