The Healing Dichotomy

“Just be the daughter.” It was well-meaning advice, shared with me by another doctor as I confided about my dad’s sudden decline in health and the challenges of offering support for my dad and mom. While I knew that creating space to be the daughter was necessary, I also sensed that holding back the vast knowledge I had obtained as a doctor, especially when my dad and mom were struggling with getting adequate care, was not the right thing. Yet, no one provides a guidebook on balancing the duality of our role as a doctor with our other roles, in this case, being a daughter.

Our healthcare system has dysfunctional elements, and unfortunately, my dad fell into many of the pitfalls. The first challenge began in the emergency department. He went to our local ED, one where I had worked as a unit clerk during my high school and early college years. I was familiar with the six-bed ED and that it was frequently staffed by physician assistants with no physician on site (available by phone and could report to the ED to assist). My dad’s blood pressure was low, and he has heart failure with preserved ejection fraction (HFpEF). He didn’t present hypoxic, and the physician assistant, while very well-meaning, said that he anticipated that my dad would be discharged the following morning. I shared my mom’s concerns that he was very weak and his legs were very swollen and advocated strongly for his transfer to the tertiary hospital. If he stayed at the small hospital, an echocardiogram was only available about once a week, and no internist or cardiologist was available to manage admitted patients.

This interaction left me with many reflections on balancing this duality of the doctor and the daughter. I have a vast knowledge of medicine and the healthcare system. In this case, I also had a super-specialized and insider perspective of how the hospital worked. To me, it’s akin to if you see something, say something. I could “see” that my dad was likely much sicker than the well-meaning physician assistant thought. I needed to advocate for him, and while doing so, that served my daughter's role of taking care of my dad the best I could.

Yet, my dad proved to be resistant, at times, to my well-intentioned advice. While I could see clearly that he needed to be at a tertiary care center, he was reticent. I could sense that it was hard for him to separate the role of doctor and daughter while interacting with me. He wanted me to be his daughter and not a doctor suggesting treatments or coordinating care. Fortunately, I had just interviewed a colleague on my podcast, and we discussed her company, Carte Clinics. Dr. Siddiqui’s company assists patients and caregivers with care navigation. Given how complicated our healthcare system is, finding the best medical professional in your geographic area who is also covered by your insurance and seeing new patients can be very confusing. It gets even more complicated, as in my dad's case, when some specialists belong to different healthcare organizations, which means medications and recommendations don’t always get translated into one cohesive patient summary or care plan. One boundary I set was that I wouldn’t micro-manage my dad’s medications. Dr. Siddiqui’s team reviewed his medications and found some potential issues with over-medication. They also helped my mom connect with his cardiologist, which helped us understand that he was supposed to start three new meds after his last visit that never got delivered. That was a likely key contributor to one of his hospitalizations.

My dad’s hospitalization following the “you’ll be discharged the next morning” lasted for about a month. During that time, they diuresed approximately 70 lbs, and he developed an ileus requiring a nasogastric tube and TPN. When I got the call about the TPN being started, I knew things had progressed to a new level of severity and that we needed to start thinking about goals of care. I also knew I didn’t have it in me to lead the conversation, and quite frankly, I shouldn’t have to. I asked my mom to request a palliative care consult. The palliative care physician completed a thorough evaluation of my dad, treated my dad’s chronic pain, and helped my parents develop goals of care that honored my dad’s values and wishes.

All seemed to be going as well as it could…then I received a call from my mom that my dad was switching to comfort care. This was about 48 hours out from my planned arrival. As an emergency doctor, I am very pragmatic about death and dying. I’m a huge palliative care and hospice advocate. Yet, this transition to comfort care felt abrupt and out of sync with the previous palliative care consult from a few days prior.

I arrived to find my dad emaciated and in low spirits. I was sensitive to the stress and isolation of being hospitalized - but I didn’t quite understand the depths that it had reached with my dad. I sat by his bed, awaiting morning rounds, and a nurse pushed a TV cart into the room. The cart had a stethoscope attached, and the internist popped on the TV. The nurse moved the stethoscope swiftly around my dad’s chest. The internist rounded via telemedicine and was done in approximately three minutes.

As a part-time telemedicine physician, I am a proponent of telemedicine. Yet, I have questions about why telemedicine was used frequently during his hospitalization. He was in the grips of life-threatening and completely life-altering heart failure. Also, the TV cart with a stethoscope was so cold. My dad needed to be touched. Beyond the human element, which is the most important, I believe several diagnoses were delayed, and his care was mismanaged due to a lack of proper physical exams to diagnose his ileus promptly and to manage his volume status better.

I reached out to a dear friend and colleague, Dr. Arian Nachat. She’s an emergency physician, a pain and palliative care specialist, and the CEO and founder of Pallity. I needed a reality check. I shared my dad’s diagnosis, his daily activity before hospitalization and after, and his profound isolation, and from what I sensed, a real feeling of being discarded while hospitalized. Dr. Nachat listened and provided several key questions I could ask my dad, mom, and the palliative care team.

Later, the palliative care physician who first saw my dad returned for a family meeting (thankfully in person). The physician explained how a miscommunication occurred over the weekend. His colleague didn’t know my dad, and he caught my dad at the nadir of his mood, transitioning my dad to comfort care without speaking to my mom or siblings. While my dad likely had capacity, the issue is this was a monumental decision that was devoid of context and communication. I was both infuriated and unsurprised—another example of the consequences of fragmented care. His code status returned to do not resuscitate and back to full treatment, short of a feeding tube.

After a few weeks at home, my dad’s pain kept increasing, and the fluid began building up; with every attempt to pull the fluid off, his blood pressure dropped. The cycle was relentless, and he ultimately decided to transition to hospice. This time, the decision was measured and made sense. While it seemed more like an administrative step and that he wouldn’t be leaving us anytime soon, a few days later, he had a neurological event, likely a stroke. Since he was now in hospice and didn’t want to go back to the hospital, they kept him at the hospice house to determine if he was at the very end or if there would be more time. I booked another trip home.

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“Grief is a very living thing. It visits at random. You can’t schedule it. I tried to work it away. I tried to drink it away. I booked myself like crazy, and all it did was wait for me to finish.”-Tyler Perry

We generally talk about grief after someone dies. As I walk this road with my family, grief is very much an experience that begins before death. There are so many moments that grief wells up. The first time I realized that my dad had days when he couldn’t answer the phone because he was confused or too weak was the realization that the ease of simply picking up the phone and knowing he’d be on the other side was gone.

Before I left for home, another colleague, Dr. Tracy Sanson, shared with me some advice in case this was the last time I saw my dad in person. She shared the book The Four Things That Matter Most by Dr. Ira Byock, a palliative care physician. He shares that the four phrases that people need to say or hear before they die are variations of:

1. Please forgive me
2. I forgive you
3. Thank you
4. I love you

These phrases were extremely helpful as I flew home, very much this time, as the daughter to say what may be my last in-person goodbye.

What I’ve learned most from my dad’s dying experience is the power of our community of women emergency physicians. Practicing medicine and going through life struggles alone is too hard. Together, we have a vast network of women pioneering new companies and a diversity of lived experiences, making the hardest parts of life a bit more manageable. Emergency doctors gravitate towards fixing, doing, and being in motion. Thanks to this community, I could shift from doctoring to daughtering.  

I'd love to hear how this article resonated with you. Please directly message me on ACEP Engaged, IG or Threads, or @revitalizingdoc.

Andrea Austin, MD, FACEP, CHSE
Chair-Elect, AAWEP
@revitalizingdoc