Today is my 27th birthday (yes, on Friday the 13th) and tomorrow I graduate from medical school, a moment I have been waiting for my entire life. And in three short weeks I am lucky enough to marry my best friend. But in the midst of all of these joyous occasions, I want to write about someone dear to me who passed away recently on May 30. My grandfather. The healthiest 97 year old you could ever lay eyes on. The person who taught me what it’s like to be on the patients’ side in a hospital.
Grandpa, who fed and clothed himself, who used to jump up the stairs two at a time until he turned 90, suffered an ischemic stroke on May 23. He was left hemiplegic (paralyzed on one side) and unable to speak or swallow. The inability to swallow was what ended up being the final straw that led to the decision to transition to home hospice. Because he couldn’t swallow, we debated for days whether we should put him through the discomfort of a feeding tube. Is that the ethical thing to do in case he recovers his abilities? But if he doesn’t ever regain swallowing function, why put him through unnecessary pain and torment? Plus, a feeding tube does not take away the constant risk of aspiration, an inhalation of secretions into the lungs that can be fatal.
The decision to transfer to home hospice was an incredibly hard one. In the hospital I spoke to families about this many times. It was never easy, but I always felt they would eventually see that hospice is a humane option for their dying loved one. And when I spoke to the members of my grandfather’s care team (who were excellent and very patient, I may add), I could sense that feeling in their eyes. Here is an old man in his 90s who has had a massive stroke. Why would the family put him through more?
But in my mind I couldn’t help but wonder if the doctors were oversimplifying things, that they were rushing us into a decision without their really knowing my grandfather the way we did. They saw him for ten minutes a day; I’ve known him for now 27 years. I know how he looks to them in their eyes, but I didn’t feel like they knew him through mine. I wrestled with the thought that he could recover, that he was so strong at baseline that given the right therapy he could be strong again. I struggled with not knowing his prognosis, and no one could give me the answers I wanted and needed. If even I, someone about to get her MD, felt this lost and confused, I can only imagine how this situation feels for people not in the medical field.
One week passed between the stroke and my grandpa’s passing and I struggled with the hospice decision the entire time. If he were in a coma, perhaps that decision would be more clear. But he was lucid, able to follow commands, able to squeeze my hand tightly with his one working hand and wave goodbye with an attempt at a smile when I left the hospital. I even felt like sometimes I saw him attempting to swallow. But in the end, I felt like I had to make peace with our decision. When I saw him angrily bat our hands away when we tried to suction him or change his diaper, I felt his frustration at his situation. He tried to talk but sounds came out as guttural cries. In the end, I convinced myself that he wouldn’t want to live in this state anyways.
The experience made me think hard about how I myself talk to families about end of life care. The topic is never easy and families are already so emotionally charged. I think one of the feelings I want to impart to my patients’ families is that they can take the time they need to come to a decision. I don’t want them to feel like I am rushing the decision or that I need that hospital bed for another patient I can actually help. I want to explain all the options clearly, and explain the medical situation in non medical language. And most of all I want them to know I’m on their side, as their medical doctor and as an emotional support. My friend who just finished her intern year at Santa Clara Valley told me it is a privilege to be a part of these hard conversations, and she’s absolutely right. I just hope I can be worthy of that honor.