Inpatient v. Outpatient: Can the Same Level of Care Be Achieved?
A question I've asked myself for about 6 months now is whether you can achieve the same level of care at an outpatient facility verses inpatient care at a hospital.
Six months ago, I was released from Diamond Headache Unit in Chicago's Presence's St. Joseph's Hospital(PSJ). When I arrived at PSJ, I had been fighting a 742 day long migraine cycle. After a brief stay, I was able to leave PSJ headache free and with 2 new diagnoses.
While I was in the hospital in Chicago, I had a team of physicians working around me to try to help me through the overwhelming pain I had been experiencing for a little over 2 years. This team included: an O.D., a Neurologist, a psychologist, a psychiatrist, a PhD in Eastern Medicine, interns, counselors, massage therapists, pharmacists and a social worker. This team procured my records from almost ever physician I had seen leading up to my hospitalization. They worked in synchrony... well, most of the time... to get the medical tests I needed to understand what had been happening in my body for more than 10 years.
My team of doctors linked me with other doctors around the hospital for the testing that was outside of their specialty. I completed a multitude of tests, and learned about different co-morbidities the doctors thought I was struggling with.
I learn that I have ehlers danlos and POTS.
Throughout my stay, I was also surrounded by fellow migrainuers, and was able to gain support through our time together. We all live on one floor together, and have activities in the evening to attend after our doctors go home for the day. We have support groups, we paint, play cards, and even have mocktail hour.
One of the greatest blessings is that our fellowship continues even when we return home. Our bonds are maintained through Facebook groups, phone calls, emails, and texts. The bonds we made at the Diamond Headache Unit last a lifetime.
I was grateful for the diagnoses, and the assistance that I was able to get while I was in the hospital. Simultaneously, I was overwhelmed by the thought of returning to my life as the "same" person I was before I went in, because she was not my reality anymore...
For years I had been experiencing migraines and joint pain... dislocations and sprains were a regular occurrence in my life... little did I know, I needed accommodations and help instead of "push through it". I'm so glad I learned!
Upon my release, I was returned to the care of my local doctors back home in Texas. I have an incredibly supportive primary care physician. She worked with me and the neurologist in Chicago to ensure that I obtained referrals in the area.
I met with an excellent neurologist from their referrals. The local neurologist is caring and willing to try new treatments. However, my roster of doctors needed to grow to help to manage the symptoms and realities of my new diagnosis. The new line up is to include: cardiologists, geneticists, immunologists, and a GI specialist. Each of the doctors I have met along my journey have been helpful and caring. However, it has been my experiences since I have returned home that compelled me to contrast the two experiences.
It was always challenging to orchestrate doctors and care when I was growing up. While growing up, my mom accomplished the truly herculean task of informing all of my physicians, and challenging the insurance company any time a new medication was rejected or a new therapy stopped. She did this as my caregiver. My mom stayed home to make sure that I was okay during my time in school. She gave up more than I'll probably ever know, and for that I am forever grateful to her.
As and adult, I must navigate from doctor to doctor on my own, and I have to bring along a brief case of files and records including, but not limited to: previous test results, current medications and opinions, my accommodations paperwork from work and school, my insurance information, my ER records, information on my surgeries, and my abortive medications in case a migraine attack happens in the office of anyone other than my neurologist. All of these things have to come along each time I meet a new specialist so that they understand their new role in my continuum of care. It is exponentially more complicated because each new medication any member of my team at home wants to add on must be run past all of the doctors in that continuum to ensure that it is safe across the co-morbidities.
In the hospital, I was lucky, everything was updated into one system, and checked daily by a pharmacist to ensure that it will not jeopardize the overall health of the patient.
The opportunity to engage with other patients is also lacking when you're an outpatient. There is limited access in waiting rooms and hallways, but it is hard to know who is open for exchange or if their diagnosis is even remotely similar to yours. Maneuvering these complicated realities can make a patient feel alone in a crowded room of their peers.
On top of the all the appointments, patients with chronic illness and multiple diagnoses also have to be their own guide through referrals, their accommodations, their medications, and personally have to understand their limits. All we can do is continue to come prepared, learn as we go, and support our community. Finally, we must honor our emotional experiences as a chronic illness warrior. So, to all my fellow warriors...
Leave you today with light and love,
Katie Pearson Disability Accommodations Advocate
