Elaine Waples
Complications from my cancer sent me to the hospital again recently. The news that I was in trouble came unexpectedly from my oncologist’s office Thanksgiving eve, following a routine blood test. “Your liver numbers are out of whack.” My response was “Really?” as if I’d been notified that my driver’s license had expired.
I was diagnosed with a blocked bile duct and I missed the turkey and cranberry sauce. My oncologist called in a gastroenterologist, who scheduled a procedure to open the blocked duct. But my tissues were too distorted to complete the procedure, so the next day an interventional radiologist inserted a bile drain. I met him seconds before I drifted into sedation. When it was over and I was awakening, he offered me a cheery “good luck” as I rolled out the door. I never saw him again.
I returned two weeks later for a repeat of the original procedure, and this time it worked. A metal stent was implanted that propped open the duct and I was happily discharged. The next afternoon, though, I was back in the emergency department with a fever and elevated white count. A young doctor ran some tests, made some phone calls, and the staff hospitalist admitted me with pneumonia.
Over the next four days I received care from a rapidly growing list of consulting physicians: a pulmonologist, a different interventional radiologist, a partner to the first gastroenterologist and an infectious disease doctor. The hospitalist coordinated their care, monitored my progress and ordered meds and tests.
As the days moved on, the treatments, tests, antibiotics, and procedures continued. My husband and I experienced a revolving door of physicians who we met for the first time, each focused on something different. They were there for their specialized knowledge and skills: monitor the bile duct, eliminate the infection, drain the lungs. At times it felt like we were dealing with unrelated illnesses and I kept thinking, “I have cancer! Is someone connecting all this?”
The processes of hospital care are supposed to be understandable to the average patient. But I wonder if they are. Many patients expect that their care will be managed by a familiar specialist, the doctor who saw them last or their primary care physician. They may have never heard of a hospitalist or know what a consulting physician does.
We have realized that we have a strong role in making patient-centered care really work. We asked questions of the doctors. Are you talking to my oncologist and my primary care physician? Some had puzzled looks, as if we had introduced a stunning no-brainer into the conversation. They all assured us that they had already connected directly, through the EMR, or through the hospitalist.
But we weren’t sure that was happening. We didn’t always know what they were saying and or what they were hearing. Questions got the information flowing and our conversations, both good news and bad, became more collaborative. Even so, it didn’t just happen. We had to elicit information. We had to be active advocates for my care.
I am out of the hospital now. I left with books, flowers, bottles of soap, lotions and an oxygen tank. I needed a Sherpa. I also had a pretty thorough “to do” discharge list that included a home health nurse, a therapist, pain meds and oxygen. I have since connected with my primary care doctor and my oncologist. I am vastly better, though there is a lot of treatment ahead. But at the moment, there is medical homeostasis.
I think about the experience often. My care was excellent. I was sick and in trouble, and it was the right care at the right time. The hospitalist who coordinated the care was skilled, diligent and competent. My team of consulting doctors were terrific. Left to my own devices, I probably could not have chosen more wisely.
But there was an eye-opener. The care was coordinated differently than I had imagined. I expected to see doctors I’d known before. It turns out they were involved, but with the new team in the hospital. It was clearly the right care, but much of it was, for us, out of sight, behind the curtain.
The doctors who treated me have moved on to other cases and probably never thought of me again. I owe them my deepest gratitude and I would like them to know how much better I am. I wish I could see them one more time.
But I won’t. That’s just not how it works.
Elaine Waples is a painter, writer and pianist who lives in Atlantic Beach, FL.
Care And Cost 
No, we don’t understand the many physicians that pass by…sometimes for seconds. I don’t recognize many of the Dr. names that are on bills i’m receiving for my terrible car accident 3 months ago. I usually call the institution and ask what kind of a doctor is Dr. Smith. The institutions don’t always known and ask to call me back. As you stated, after long care, we keeping expecting to see a familiar doctor. I never did either. It’s what we have learned to trust. A familiar face means it’s ok because the last time you sat this face, you got better. Not seeing the same Dr. creates anxiety for me, and I’ll bet it does for others, too. It starts to feel a little like socialized medicine to me and not specialized medicine. But I grew up in the military, and never saw a specialist until I was in my 20’s. The revolving door from which a new face emerges is the familiarity to me. it is probably the reason I am distrustful of them, too.
Seems to me that in today’s world there is not always a drug you can trust, too. I can’t tell you the number of times I’ve turned down a drug to the horrors of a Dr. to see that same drug recalled a month or so later.
Everything you wrote in your article is true as I see it. That is one reason we need help when we are sick and in treatment. We need advocates. Also, I am grateful for the care that I received, and there is no one to tell.
I am following your articles, and they are spot on. You say what others are thinking. That makes it nice. Those of us in treatment are not alone after all. We have you. You are the loving arms and the assurance that you think like we do. It means a lot. Thank you for writing.
Reblogged this on health it rant and commented:
Great post – i love a happy healthcare story. the golden nugget in this post:
“I was sick and in trouble, and it was the right care at the right time. The hospitalist who coordinated the care was skilled, diligent and competent. My team of consulting doctors were terrific.”
We see hospitalists playing a more critical role in the care of our patients.
I produce a podcast for the Society of Hospital Medicine, interviewing hospitalists about their role in the hospital care continuum on topics ranging from teach-back to infection control to successful care transitions to practicing evidence-based medicine.
Your very-different-holiday-season voyage points up how important hospitalists are to people who find themselves facing major health challenges in a hospital setting. I’m glad you, and your family, persisted in asking questions, and being active care-team members. The hospitalists I talk to all react with what seems close to glee when I ask them, “How can patients help?”
I’m working on getting SHM and the Society for Participatory Medicine (welcome to the SPM party, BTW) introduced to and working with each other. If ever there was a collaboration “made for each other” …
Best wishes for a continued win against a real monster of a disease. Kick tail, sister.
I learned this when my BIL was in the hospital for pancreatic cancer.
Someone called in a team of doctors, we are not sure what each individual job was.
I drew the line when someone came in to see him that was a psychiatrist.
I told the nurse that only essential medical personnel are allowed to see and treat him without the family’s permission.
I got the feeling that it was one big PPO insurance “free for all,” and my BIL was going to die anyway.
I realize now that I should have asked for a nurse navigator, and let her know our wishes and concerns.