Life at the intersection of health and mental health: Coordination of care

I see my oncologist tomorrow for the first time. By now I have had two surgeries, nine tests and seen 29 professionals for my breast and uterine cancer. I am still at the beginning of my journey – just seven weeks out from diagnosis. Tomorrow will mark the 30^th professional called on to help me with these two illnesses with an unknown number yet to go. 

A few obvious thoughts:

1. This is exhausting. I have long since lost any sense of modesty. After a while it’s all kind of a blur, anyway. When I go for a test or procedure I have to look at a printed list I carry with me when they ask me my doctors names as I have so many of them (and it’s a relatively uncomplicated disease and diagnosis). Every time I interact with another professional I need to ask questions, to engage, to think. I feel like I have to invest and form a bond to ensure the best outcome for each interaction. I am tired – tired of dealing with strangers, tired of explaining, tired of answering the same questions over and over again. But I really cannot afford to show this because I need the professionals I interact with to be as committed as possible to the procedure they are doing, the forms they are filling out, the work they are doing that will move my case along to the next set of professionals. 

2. This is depressing. So every time something happens with me, my records are shipped back and forth between surgeons and radiologists and cancer specialists and goodness knows who. There are just two people on my healthcare team who know nothing about what is going on with me, who have no access to my physical healthcare records: my psychiatrist and my psychologist/therapist.

We have long known about the co-morbidity of cancer and depression. For example an article published in 1996 states, “Studies show that half of all CPs (cancer patients) have a psychiatric disorder, usually an adjustment disorder with depression. Effective psychotherapeutic treatment for depression has been found to affect the course of cancer. Psychotherapy for medically ill CPs has reduced anxiety and depression, and often pain. In 3 randomized studies reported previously by D. Spiegel et al (1989), psychotherapy resulted in longer survival time for patients with breast cancer (18 mo), lymphoma, and malignant melanoma compared to controls. The treatment of depression in CPs may be considered a part of medical as well as psychiatric treatment.”(PsycINFO Database Record (c) 2012 APA, all rights reserved) Cancer and depression. Spiegel, David; The British Journal of Psychiatry, Vol 168(Suppl 30), Jul 1996, 109-116.

The importance of psychiatric treatment for people with cancer is fairly well known yet as far as I can tell, no one ever has even thought to ask me/my family if I 1) feel depressed or 2) have a psychiatrist or therapist who should be involved in my care. Ironically, my psychiatrist’s office is located less than 500 feet from the front door of the hospital where I went for both surgeries.

I did connect with my therapist immediately after my diagnoses and she has stayed in touch. I will talk with my psychiatrist when I see him for my routine follow up in a month. But it seems to me if everyone else in the healthcare system knows a whole lot about my breast and my uterine cancers, my psychiatrist and therapist should be just as involved in the conversation. Especially if it “result(s) in longer survival time.” Because, yes, I and everyone else with these illnesses would like a longer survival time.

3. This is expensive. Twenty-nine professionals and counting, not including office staff, administrative form filler-outers, techs and other folks who poked and prodded and drew blood and all the rest. It doesn’t take a genius to do the math here. My casual calculation was $3,200,000 in salaries for these 29 people involved in my care so far. Yikes.

4. This seems risky. The sheer number of people involved in my care seems to me to create more opportunities for someone to make a little mistake that can then impact everything else that follows. One very tiny example: The nurse who prepared me for my uterine cancer surgery said yes, it was ok for me to swim ten days after my surgery. But when I asked the doctor the same question the day after my surgery he stated no, I could not swim (he actually got red in the face he was so emphatic about this.) Then in my post-surgery follow up a week later, I was told by yet another nurse that I could not even take a bath for 90 days post-surgery. Good thing I kept asking the same question.

5. This illustrates the point that we must have universal electronic medical records and systems that are compatible so that all of these people directly and indirectly involved in care, decisions about care, and administration of care can talk with each other. The 29 professionals who have worked with me so far did so in 13 different buildings. And there has been an untold number of administrators flung far and wide across multiple sites, cities and states who have viewed my records and added their piece to the puzzle. 

6. This raises the question: Who is coordinating my care? As far as I can tell, I am. My GP is involved but not often consulted. My radiologist and oncologist do not talk with each other – I am letting each of them know what the other is doing. My surgeon was consulted by my GP when I had a problem post-surgery that I did not want to go talk to my surgeon to deal with – but I needed to go back there anyway, darn it (And he told me my problem was predictable and might happen again – it would have been nice if he had warned me, sigh). As far as I can tell no one but me is talking to my GP. So what happens if I get really sick and am unable to do all this? What happens if my depression gets so bad I cannot leave the house? Luckily I have a good family support system and wonderful coworkers who I can call on – but what about others who do not have this kind of system in place?

I keep reminding myself that both of these cancers – breast cancer and uterine cancer are really not all that complicated. But treatment and coordinating all of this is very, very complicated. I shudder to think about how hard it is for consumers with cancer and behavioral health and diabetes and COPD (and this cannot be all that uncommon with the preponderance of smoking and the weight gain due in part to the medications we take in the behavioral health community.) Can you imagine how hard coordinating all of that might be? Meanwhile I have another couple of phone calls I need to make before healthcare offices close for the evening…