This article was the feature article in the NAMI Advocate Winter 2018 edition: Putting the Pieces Together on Integrated Care.
“She’s just anxious, Allison,” said my mother’s physician.
I had called in desperation to report Mom’s intensifying symptoms: cold sweats, difficulty breathing, low-grade fever, no appetite. In return, I was dismissed. I reported her labored breathing and her inability to force herself to eat—how she wrinkled her nose to once-favorite foods, how sweat rolled down her face, even when our car’s air conditioning was turned up too high. Despite her physician’s lack of concern for all this, Dad rushed Mom to the ER one day anyway, where her excessive coughing delayed a necessary lung biopsy.
The next day, Mom’s physician (now involved in her care) met me outside her hospital room and quietly said, “I’m sorry, Allison. Your mom has lung cancer.” I slowly entered her room and sat down. The words continued: “Late stage … little hope … chemo immediately.”
Devastation. Anger. Disbelief. The physician left me with nothing to hang onto. As Mom gasped for breath, her anxiety showed; she finally knew what was growing inside her, what she tried to treat with antibiotics and antihistamines. It was like being trapped in a nightmare. Mom was only 45 years old, was never sick, had never smoked, never even had allergies—and she loved life.
When I returned the next day, I walked into an empty room. I ran to the nurse’s station. “We’re sorry… Your mom had a stroke and is unresponsive. She’s been taken to the ICU.” Within hours, my family gathered to make “the decision.” I watched as my dad struggled to make the final call. I was numb. I watched the doctor’s lips move, but I didn’t understand. We gathered around her bed as Mom took her last breath. It had only been two weeks since my phone call asking the doctor for help. Now she was gone.
I later found in Mom’s datebook that she tracked her temperature for months and scheduled appointments with specialists who gave her various medical diagnoses and prescriptions. However, the elephant in the room was always her diagnoses of depression and anxiety. Her mental health diagnoses somehow managed to overshadow the underlying cancer that had been quickly invading her body. “She’s just anxious, Allison.” No… my mother was simply never heard.
I was 23 when my mother died. I’ve never really gotten over her death, but over time, I’ve learned to move through grief and turn it into something else. At the time, I’d been unsure of my career path. But after her death, everything became crystal clear.
Stigma cost my mother her life. I never wanted to see that happen to anyone again.
So, I obtained my master’s degree in social work and swore that I would always listen to my clients. I worked with people who had mental illness and often observed their physical symptoms being neglected due to their predominant mental health diagnoses. They would frequently call their doctors with symptoms that could be related to anxiety or depression and would have their psychiatric medications increased before having possible physical conditions evaluated.
People coming in for mental health services often lack a proper education about how their physical conditions impacted their psychiatric symptoms. For instance, I once met with someone before she met with her psychiatrist. She stated she was going to request an increase in her antidepressants since she was experiencing low mood and decreased energy. But I observed that she was drinking a regular soda and eating chips. Knowing she was diabetic, I talked with her about the importance of letting her psychiatrist know about her eating habits and blood sugar levels before defaulting to an increase in antidepressants. She had no idea that her food choices might be impacting her mood and energy and her psychiatrist had never mentioned it, either. As a clinician, it was frustrating to see.
That’s why I was excited when the organization where I had been working for years decided to become part of Missouri’s Healthcare Home pilot program. This program spearheaded the path to integrated care for our most vulnerable populations: people diagnosed with mental illness and major physical health issues. Research from the program showed that people with mental health diagnoses die, on average, 25 years earlier than people without mental illness—due to things like lack of health care integration, health literacy, poor nutrition and other social factors that impact overall health and wellness. When this program was initiated, I worked on its treatment team and referred many clients to the program, so they could have the medical oversight needed as part of their overall care.
When practicing integrated health care, an ongoing challenge is to coordinate care across all providers to ensure treatment plans are focused on health, wellness and preventive care. There are many barriers, which often keep doctors treating patients in a silo-approach (focused on our own areas of expertise). But the benefits of integrated care are innumerable—including decreased trips to the emergency department, decreased hospitalizations and reduced cost of health care thanks to preventative care. Having a whole team of professionals across various disciplines improves outcomes through early detection, monitoring and care coordination.
Programs like Healthcare Home show these effective interdisciplinary teams in action. Doctors, nurses, dieticians, occupational therapists, therapists, social workers, etc. meet to consult with each other and coordinate care using knowledge from each area of specialization. That way, when someone with physical health symptoms and a history of mental illness or substance abuse is being treated, they are heard—without stigma or judgment.
In the 32 years since my mother’s passing, progress in medicine and psychiatry have drastically and positively influenced health care. Thankfully, advances have also been made in integrated care, but we have a lot of work to do. We must break down the silos that separate physical and mental health because everything is connected: Physical symptoms affect a person’s mental health and a mental health diagnosis may increase the risk for physical health-related issues. Listening to a patient’s every symptom will lead to proper treatment and better quality of life.
As doctors and mental health professionals, it’s our job to dig deeper, peel the layers of the onion and address the core issues that keep people from living life to their fullest. Whether that’s uncovering childhood trauma that hasn’t been addressed or substance abuse that helps numb overwhelming symptoms or pushing past a mental health diagnosis to see a possible physical health diagnosis, addressing “one side” of a person’s care is just the tip of the iceberg.
If my mom’s cancer had been caught earlier, she may have been cured, but just as important, she would have been heard. It was only when my mother was diagnosed with cancer that her health care professionals gathered to formulate an integrated treatment plan. But by that time, it was too late.
I will never forget those words: “She’s just anxious, Allison.” Losing my mother changed my life, but it also inspired me to make changes in health care, so everyone—regardless of mental health diagnosis—gets the whole-person, integrated care they deserve.
Allison White, ACSW, LCSW, CCDP-D is a licensed clinical social worker with over 25 years in the field. She works in a community mental health integrated health care program. An important part of her work is recognizing and addressing all aspects of a person’s life and working with other health care professionals to integrate and coordinate their care. Visit her website at www.wellnessalley.com.