End of life

Yesterday I teared up on rounds as we were discussing end-of-life care.

We were talking about the end of life and how the caring for the person at that point changes when you are balancing quality and quantity of life. More specifically, we were discussing people who are imminently dying and whether or not they feel thirsty or hungry, and whether feeding them and providing fluids for them was doing more harm than good. My attending was telling us that feeling thirst at the end of life isn’t correlated with the amount of fluid the person needs, and that the thirst can often be alleviated by swabbing the person’s lips and mouth with a moist sponge. Over time, people tend to stop feeling thirsty or hungry at all. She described a common scenario where the family of the dying patient are alarmed that their loved one isn’t being fed or given fluids anymore, even if the family understands that the patient is imminently terminal. There’s an instinctive cross-cultural urge to continue feeding the loved one, thinking that it’s needed to be kept comfortable and alive. I was trying to focus on her point which was that when it comes to people who are that far gone, feeding them can lead to more discomfort with increased salivation and GI secretions that can predispose them to choking, infections, increased interventions and potentially a more drawn-out and painful death.

But I was just picturing my grandma in the hospital bed asking over and over for hot water. But she was NPO because they were worried she’d aspirate. I finally wet a gauze and put it in her mouth. She sucked on it and didn’t ask for water any more. A few days later she died, they said it was because of aspiration pneumonia. I cried because I thought I had contributed to that since I had given her a bit of water when she was thirsty. Even though people told me the small bit of moisture in her mouth couldn’t have caused her aspiration, that she already had food remnants in her esophagus before coming to the hospital, and even after hearing from my attending on rounds that providing a swab of water helps relieve the thirsty suffering without risking them aspirating, I still felt sad and teared up.

Funny experience, standing on the ward floor in our white coats and steths around our necks, discussing studies and evidence for this or that medicine or treatment or intervention, while feeling such dramatic emotions inside. We talk about these things without talking about how it makes us feel. It’s ok to bring up previous experiences with patients, but we don’t bring up personal experiences with our own family or friends. Even though I think one of the most important things is to be able to feel what you’re talking about, to be emotional, to empathize, I still struggled hard to dissociate any feelings from what we were talking about, and to look at it as just facts.

No right answer for things.

Today, a daughter and mother had to decide whether to give the unresponsive elderly father a feeding tube through his abdomen into his stomach or whether to bring him to hospice care. Before coming to the hospital he had advanced dementia but would sing songs to his family. When he came to the hospital he has been sleeping and has minimal brain activity. The mom, elderly, only speaks Italian and during the family meeting today we weren’t sure if she didn’t understand the situation or if she wasn’t absorbing it. The daughter, who is the health care proxy, was at one point made it very clear that he was full code. But today, crying, she thought perhaps keeping him alive for as long as possible no matter what may not be the best decision. I remember the first time I saw the patient in the emergency room. His elderly wife next to him, so little small and seated in the plastic chair, waiting for her firey daughter to finish reprimanding the medical team for not keeping her in the loop at the start so that her daughter could translate everything that was going on to her. When everything had been smoothed out with the attending and the daughter, the attending asked if the daughter or mom had any other concerns. The mother reminded the daughter of something and the daughter translated that the mother was concerned because her husband, hypoglycemic and unresponsive, still hadn’t had his flu shot. I felt so sad that moment.