Changes in the ACA Need to Put Patients First

 The call came at 430 a.m. I answered when she called the second time, as I was too late to answer the first. “Dr. Harper. I think I need to go to the hospital. I just feel so weak.” It was Bessie, a patient I have known for over 15 years. She’s been struggling for a few week, and while we are working through this struggle we are clearly not doing it fast enough.

Standing in our way is the health care system, serving as a barrier to her getting well. In our efforts to meet outcomes, lower costs, improve satisfaction (whatever that means), we’re losing sight of our mission: to truly care for each patient as the unique individual they are.

So back to Bessie: I stopped by her home the following morning, and when I looked in her eyes I saw sadness, fear, and despair. This is not the Bessie I know. She is a retired pediatric intensive care charge nurse. It takes a strong person to be a nurse in a unit caring for the sickest children. Every day these women and men go to work and look into the fearful eyes of both parents and patients. Nurses are the anchors in these units, offering counsel, hope, and strength when times are at their worst.

I have seen both this strength and grace in Bessie through a lot of challenges over our fifteen years: heart surgery, blood clots, kidney disease progressing to dialysis, diabetes, dialysis access challenges, and now cancer. Strong through it all, the warm glow from her heart and smile on her face bring us all joy when we see her. And while the compassion, gentleness, and grace were in her eyes when I arrived that morning, the strength and courage were waning. Why?

Three weeks prior she had successful surgery to remove an early stage tumor from her stomach. The cancer was completely excised, no lymph nodes were involved, and her surgical recovery has been uneventful. She said, “My surgeon is happy with me.”

Yet while in the operating room, the hospital lost her dentures leaving her toothless for the week-to-months-long process it will take for her to get new ones. Having a now-smaller stomach doesn’t help either, as Bessie needs to eat smaller portions with added frequency. She has been stuck eating softened foods and liquid supplements. Even in the best of situations, consuming food from a blender or drinking calories out of a can is frightfully unappetizing. Not surprisingly she has lost her appetite and has not been able to keep up her calorie intake.

Five days prior to her early-morning call, she called me to talk about her weight loss and resulting weakness. We recognized that as part of the surgical protocol for her operation the surgeon had put a feeding tube through the skin of her abdomen. It was meant to be temporary, to be taken out when she demonstrated no further need for it. “Perfect,” I told my team. “We can just use the J-tube to supplement her calories until she’s able to support nutrition on her own.” Well, that’s when the gears of patient-centered care ground to a halt.

“Where’s the note from the dietitian?” Apparently Medicare needs a note from a dietitian in order to process the order; my prescription wasn’t good enough. So we called her dialysis center: “Our dietitian is off and won’t be back for five days. Our social worker is off, too. [Holiday week] There’s nothing we can do.” We were also told, “Even with the dietitian note, Medicare likely won’t approve this.” Why? Medicare only pays for permanent tube feeds, not tube feeding that is temporary.

This is where the system is terribly broken. I know there are forms to fill out and checklists to complete. I understand that Medicare and health plans have coverage limitations and “screening criteria.” Yet I’m more frustrated by the attitude. Instead of, “How can we get this done?” we’re stuck with “It’s not going to work out” so you shouldn’t even try.

How could you not want to go to bat for Bessie? Here is a woman who spent her career giving so much to patients, families, and colleagues in the healthcare system. We should do all we can to return the gifts she has given? Regardless of who the patient is, though, supporting any patient through this challenge would just be the right thing to do.

“The right thing to do.” Where has that gone? We are so caught up in pre-authorizations, red tape, and non-clinical third party administrators that we have lost sight of our mission. Why are we here? What is the healthcare system for? To help those who need it.

So, after five days of frustrating red tape and obstruction, our team did the right thing. We called back the home health agency and asked how much it would cost to go outside of insurance to get her the necessary supplies for her tube feeds. Fifteen dollars per day for the pump and $12 for the Nepro tube feeds, we were told. So little. She was one step away from the emergency room when she called me. The moment she steps in the door of the emergency room the costs of the tube feeds are dwarfed.

Fortunately, my practice is membership-based, where for a fixed fee all primary care is provided. We do high-tech, leading-edge preventive screening, and involve allied health professionals such as health coaches, personal trainers, and dietitians to help patients reach their health goals. It’s not inexpensive to be a member, and Bessie is one of a couple dozen patients from my prior practice that I welcomed to remain with me, paying little to be a member.

In this model I have budgeted a certain amount for each patient for health-related tools: FitBit, Bluetooth scale, blood pressure cuff, etc. I want to make it as easy as possible for people to build their health. No excuses. So, from this bucket I pull the necessary funds to supply Bessie with her tube feeds for a couple of weeks. She is surprised, humbled, and grateful. I am humbled and grateful to have this brave and resilient woman in my life.

Her first day of tube feeds went well. Yet we have a long way to go to get her physical and emotional strength back. I am confident we will be successful. I am not as confident about the state of healthcare. What’s next? There are talks of repeal of Obamacare and changes to Medicare and Medicaid. Who knows how it will all play out? I strongly suspect that whatever happens next won’t lead to a more patient-centered system. It won’t leave patients feeling supported, cared-for, and valued. We who do put patients first will just have to do it ourselves, one patient at a time.