I know that how my patients respond to my words is about much more than me. It's about the experiences that they have had with their health, their family/friends' health and the health care system. But I still did not expect as vehement a response as I got to the word “hospice.”
She had been very polite, welcoming us into her home to talk about end-of-life care. She was remarkably well-informed, which did not surprise me (I've always suspected that people who volunteer to talk to medical students are likely self-selected to be more health-savvy and well-educated). But when I said this word, “hospice,” which for most people implies relief and repose and a way to get help when the struggles of caregiving become too much, she dismissed it immediately.
When she told me about her experience, I appreciated that she had not dismissed me.
Her husband had fallen ill and instead of turning the corner as they thought he might, he took a turn for the worse and ended up in the ICU. The critical care doctor did not sit her down and have a long discussion about goals of care when this happened. Instead of letting her process her shock, he asked her to make a decision: should he stay intubated or should he be sent to hospice? She favored the less invasive option, hoping to be able to take him home. Her husband lived for three days on inpatient hospice. She sat next to him during his last days as he continued to struggle for breath until he couldn't any longer. She felt the hospice nurses didn't do anything for him, and she was never able to bring him home.
Understandably, when her time came, she did not want to burden her children with this sort of experience.
How do we break this cycle of miscommunication about end of life options? Stories like this are all too common, but it seems inhumane for people to have to go through such experiences in order to really be informed about what options are available for them and their family at the end of life. This patient was able to learn from her experience and will be able to apply it to keeping her family informed of what she wants. Yet I have also met patients that blamed themselves years later for not taking loves ones to the hospital, even when their loved one had requested to stay and die at home.
In medical school, we are being taught to speak to patients before this happens. We practice these discussions with standardized patients in controlled settings (we have fumbled through this twice now during my medical education; in contrast, we've been drilled how many times now on how to interpret an ECG tracing?). Often, students find that the situations are too contrived and too unrealistic. We feel that we would never be having these discussions as students anyways, and we hope that when we actually become doctors we will feel “more experienced” … or at least know the patients better.
In some ways, these discussions show an imbalance in the other direction: where patients have too little knowledge about what end of life looks like to know what they would want. They don't know what a feeding tube is, though they know they like food. They don't want to be put on a ventilator, unless there is some chance for recovery, but they do not understand that such a chance is often difficult to determine in an acute situation. So their doctor's own experiences and biases end up driving the discussion. Even with great continuity of care with a patient they know well, it is not easy for a doctor to be able to fill this gap in patient experience with just one conversation.
More and more, people are calling for a different way. More organizations have been cropping up that tell patient stories, and at least one doctor is pioneering a way for patients to learn about end of life decisions through a documentary film method rather than a purely verbal discussion. I'm not saying, as some have argued, that end of life experiences necessarily need to become a greater part of everyday conversation, but I do think that they need to be a greater part of the healthcare discussion in an equitable and open fashion.