The Importance of “Care” in Patient Care

Over a decade ago, my daughter had been hospitalized in an eating disorders unit for 7 months when I received a call from the head nurse telling me that my husband and I were being called in for an urgent meeting in 3 hours’ time. My first reaction was to question the purpose of the meeting. I wanted to ascertain that my daughter was okay and also verify that this was an urgent enough cause to warrant pulling my husband away from an active workday. She would not give me one iota of information; not a shred. Exasperated, I hung up, called my husband, and let him know that I would meet him at the hospital in 3 hours.

As soon as we sat down, we were told to take our daughter home immediately–as in right away, within the hour. Apparently, she was losing weight, despite the rigid supervision during and after meals. She was therefore considered non-compliant, and they wanted her gone.

We were absolutely stunned. On a practical level, had we been told over the phone that she was being discharged, I would have brought a suitcase to bring her stuff home. I would have gone to the grocery store to buy the foods that she needed. However, more importantly, we hadn’t figured out where she would continue treatment after her discharge from the hospital, since that was supposed to be weeks away. We had barely researched any options or considered what our next step would be. Our daughter was very sick, we could not handle her illness on our own, and we had no treatment plan in place. Simply put, we were both devastated and terrified.

We were totally blindsided. It felt like we were being kicked when we were already down, by the very people who were supposed to be helping us cope with our daughter’s illness. I could not wrap my head around the thought that after 7 months of inpatient treatment, the people who had cared for my daughter did not care about her. Because if they had, things would not have gone down like that. And even more tragically, this was the first time, but not the last time, that she was treated this way.

Our case is not an isolated incident. At the family eating disorders conference that took place in Israel last May, this very scenario was brought up by multiple other families. They too had their children expelled without any notice from various eating disorder programs around the country, and they too had no guidance as to where to seek further treatment. This is not a problem with one particular institution, or even with one particular country. I have heard similar stories from parents around the world.

It’s like these eating disorder programs are cutting their losses; except these are not losses, they are our children. Our CHILDREN. And when they are expelled from treatment, the message that is being sent to them is brutal and damaging, along the lines of, “you are hopeless”, “you are beyond help”, “you are a failure”, and “you are not worthy of treatment”.  Parents absorb those messages as well, and it adds to our already significant distress.

What angers me the most is that those messages are simply not true, and the fact that mental health professionals send them to people who are already in a fragile mental state seems horribly wrong to me. Patients do not fail treatment; treatment fails the patient. This concept, which is accepted when it comes to physical health, is somehow still a misconception in the mental health realm.

Sometimes, even with the best trained and most skilled team of professionals, treatment fails. Eating disorders are so damn hard to treat. Failure happens. Let me make it clear that I am not laying blame for that. However, when treatment is not working, for the love of G-d, please set up Plan B, whatever that may be. Try another treatment method, refer to another treatment center, sit down and talk with the patient and his/her family and consider a direction for the future together. Just don’t throw away our loved ones; they deserve so much better than that. In any country, under any circumstances, that is just not acceptable patient care.

On the flip side, my daughter has also been treated by people who care very much about her well-being and who see her as a person, beyond her illness. They will not give up on her. They stick with her, standing by her side, sometimes getting drenched while holding the umbrella as she weathers the storms, trying to shield her the best that they can. As a parent, this helps quiet some of my angst and gives me tremendous peace of mind, knowing that my daughter is cared for in the truest and fullest sense, by professionals who not only care for her, but who care about her–deeply, immensely, and profoundly. They are doing the holiest of work, with the biggest of hearts, and for that they have my undying gratitude. There are true angels out there in the eating disorder professional community, both in Israel and throughout the world.

We had a family therapist years ago who cared so deeply about us that she cried at the end of one of our tough sessions. She was mortified; she blamed it on her tendency to get overly emotional due to her advanced age. She apologized profusely and felt terrible that she upset us with her tears, but it actually had somewhat of the opposite effect on me. Knowing that she cared so very much about my daughter and our family, and that she felt our pain, made me feel like she was taking some of the burden off of our shoulders and sharing it with us. And somehow, that steadied me and gave me the strength to handle the enormous challenges that we were facing.

What the therapist perceived as her weakness was actually her greatest asset. Her empathy for us allowed for a connection with her that helped us exponentially to deal with our emotions and to support our daughter. And it allowed her to eventually get all of us to a better, healthier place.

Knowing that the people who are caring for my daughter also care about her helps me sleep at night. And when they persevere, even when it’s difficult, they are saying, “I believe in you”, “you are worthy of help”, and “there is hope.” Now that is patient care.