Dhaval Desai: One year later - True advocacy aligns with patients’ wishes, not just treatments

Sunny, cool and a brisk wind on an early spring morning, I was in survival mode trying to keep it all together from home, work and everything that went in between.

It had been a tumultuous two weeks for my father in and out of the hospital. As my wife and I were loading our kids in the car to get to school, something felt eerily different to me with impending doom. I was nauseous, anxious and simply felt as if I had been gut-punched. It’s as if my inner voice was screaming at me “your dad has a week left to live!”

Fear and anxiety aren’t rational, but they consumed me that morning. I had always trusted my gut instinct as it rarely has failed me, and for that reason it was all even more daunting. That morning, my father was having yet another outpatient test, part of many since he got sick. As a physician, I just wanted to find something big wrong with him to tie it all together, so we may then have a way to try to fix it. He was delirious that morning and his blood sugar was high. Per protocol, that test shouldn’t be done. I rushed to the hospital pleading it be completed, as we needed it for diagnostics. Desperate for answers, the team listened to me and cautiously agreed to complete it. But alas, there were still no answers.

That morning was a culminating point after a few weeks of physical and cognitive decline for my dad. How fortunate that he was being cared for by colleagues and staff whom I trusted. But I still couldn’t let my guard down as I knew how complex health care was and owned the responsibility as his son to advocate for him.

Can you believe that I always wore my hospital ID badge when I was at his bedside in the hospital, even when I was wearing a hoodie and jeans? I wasn’t trying to flaunt my physician title, but I just felt more secure with the badge. Was it a form of advocacy or simply a prop? Probably a mix of both. I needed it to help me feel present and remind myself and others that I was a physician too, and maybe could help despite not being directly on the care team. Yes, the doctors, nurses and staff had his best interest. But I also didn’t want to leave any page unturned and was desperate to find an underlying reason for his entire decline. As I was constantly unsettled, anxious and on the edge, the only marginal antidote to all of it was advocating. It’s the only thing I could control.

In the days following that awful gut-wrenching premonition that my dad was dying, it all became a reality. He was readmitted to the hospital, short of breath and felt like he was suffocating. He remained delirious despite the strongest medications used to reverse it. On a Monday morning after a tumultuous weekend in the ICU, he just woke up (still on high amounts of oxygen) and was clearheaded. He told us he couldn’t do it anymore and wanted hospice. He wanted to be comfortable. It was not only a directive from him as our patriarch, but something he understood clearly.

As a doctor, I was relieved he understood his condition and aligned with his decision. But as a son, I was emotional and distraught. My mom, brother and I all were devastated. Truth be told, we are a family who strives on control and fixing things. In those moments, none of us had control, including my dad had lost control as his body declined.

So much of advocacy feels like yearning to win by getting to a desired goal, which often in medicine means healing or recovery. This time, perspectives were shifted for me, as advocacy wasn’t about recovery, but aligning with his wishes and making him the most comfortable at the end of life.

None of us were ready for him to die. We would never be. But it’s what he wanted.

“You could die by this weekend. Do you understand that?” I tearfully questioned. He said “I know. What will happen will happen.” Despite being raised in India, he knew so many song lyrics and was so cultured. He told us “Qué será será!” (“What will be, will be”). He even pulled me aside separately and disclosed “this is what (he) wants. Don’t let anyone change (his) plan.”

In one of our final family meetings with the physicians, we were discussing his goals, and the question came up asking if he was truly understanding the comfort care plan. Or was he just trying to ease the burden on his family by taking the route of hospice? I stood strong and vouched for him saying “I disagree with that, as he is ready and accepting of the situation.” He nodded strongly in affirmation. That was advocacy.

And don’t get me wrong, the advocacy my mom and brother had for him at the end of life was so critical too. Seeing his brow wrinkled, raspy breathing, paying attention to every sign, assuring he was comfortable in his last hours and minute by questioning if medications administered were sufficient. That was advocacy.

As things settled after his death, friends and family told us how strong we were through the process. We emphasized that my dad was the strong one. We were merely put in a position to love him and more importantly, advocate for him. Advocacy in health care is not always about healing and curing, but it’s also most importantly about aligning with the patient’s wishes. After all, the greatest act at the end of life isn’t heroic healing and curing but assuring the patient’s final moments reflect what they wanted. Qué será será!