Imagine this scenario: Parents bring their 15-year-old daughter, who was diagnosed with cancer, to an oncologist for information on life-saving treatment protocols. The parents, who are clearly fearful for their daughter’s health and quite possibly for her life, want their daughter to begin receiving vital medical treatment immediately. They have done their research and have found one of the top oncologists in the country.
During the middle of the appointment, the oncologist turns to the girl and asks her whether she wants to be treated. Wait, what? Yes, the doctor asks a 15-year-old cancer patient whether she wishes to be treated for her illness. The girl tells the doctor that she isn’t interested in getting better because she doesn’t think that she is really all that sick, and that she doesn’t want treatment because the side-effects frighten her. The doctor then turns to the parents and tells them that he won’t consider treating their daughter until she expressly states that she wants to get better. The parents leave the oncologist’s office feeling devastated, terrified, and abandoned.
These same parents are determined to find treatment for their sick teenage daughter before the cancer spreads even further. She continues to get weaker as the illness takes a deeper hold in her body. They find another highly reputable oncologist, only to be put through the same déjà vu experience where their daughter is asked whether she is willing to accept help and she gives the same negative answer. In this case, the parents are told that their child cannot be treated until she either consents to treatment or until she hits rock bottom, whatever that means. These helpless parents, who are desperate to find treatment to save their daughter from cancer, are actually instructed to stand by doing nothing while their daughter gets sicker and sicker.
It’s not that the treatment doesn’t exist, because it does. It’s just that no one is willing to treat their daughter until she admits that she needs help, conquers her fear of treatment, and expresses an interest in getting better. No one is denying that this child is sick; the medical tests have proven conclusively that this girl has an illness that will get progressively worse if untreated, and can possibly lead to her death. Yet these poor parents cannot find the intensive, high level cancer treatment that their daughter needs, because apparently a prerequisite for receiving cancer treatment is that the patient needs to want to get better and needs to be willing from the outset to face her fears. The premise seems to be that if a patient isn’t ready for treatment, then the treatment will not be effective.
I’m sure you can’t imagine this scenario, and quite honestly neither can I. I highly doubt that it would happen if a 15-year-old girl has cancer. However, if a 15-year-old girl has anorexia, then it’s a whole different ballgame. This actually happens. It seems that in many respects, the mental health playing field is not nearly as level as its physical health counterpart.
I didn’t make up this story. Quite sadly, it’s an accurate and true account that happened to a mother who called me last week for advice. Her daughter was turned away from eating disorder treatment not once, but twice, because she was considered resistant to treatment when she would not proclaim that she wanted to get better.
Turning patients and families away on the basis of resistance to treatment baffles me, because resisting treatment is one of the hallmarks of anorexia, and this is something that I would expect every clinician to know. Delaying treatment while waiting for a patient to gain some sort of insight or change in attitude is foolish at best and potentially fatal at worst. The earlier an eating disorder is treated, the better the prognosis. So delaying treatment until a patient is deemed “cooperative” will most likely negatively impact potential recovery.
Anorexia patients often suffer from a condition called “anosognosia,” which means that they cannot recognize their own illness. So expecting them to admit that they are sick and that they need help as a prerequisite for accepting them into treatment seems counter-intuitive to me. Thank G-d, there are plenty of people who were initially resistant to receiving treatment who have made full recoveries. And conversely, unfortunately there are plenty of people who expressed an interest in recovering but who were unable to conquer their eating disorder. Just because you say that you want to get better doesn’t mean that you will, and just because you say that you don’t want to get better doesn’t mean that you won’t. So using willingness to be treated as a requirement for treatment seems pretty baseless to me.
From the outset, clinicians truly have no idea of who will recover and who won’t. Treating all patients as if they have an excellent chance of recovery, regardless of the patient’s willingness to cooperate in treatment, can go a long way to positively affecting treatment outcomes.
These parents, who were denied eating disorder treatment for their daughter, are not giving up. They are steadfastly determined to get their daughter into treatment and out of grave and potentially mortal danger. They are not waiting until their sick child hits “rock bottom” and they are not waiting until their daughter is ready to admit that she is sick and that she needs help. If they wait for that to happen, quite bluntly, they may end up having to bury her. I admire their strength and their fortitude, and I empathize with their terrible struggle. No parent should have to go through this.
I know that comparing cancer to anorexia is an imperfect analogy, and I know that a willingness to participate in treatment can be critical to recovery; however, I feel like it’s time to call out practices which promote suffering instead of healing, especially in a population which is already in distress.