In a hospital, urgent decisions are both frequent and necessary. As a doctor, I often see families at the peak of stress when a loved one is sick and a decision is imminently needed. Any advanced care planning they have done, including a living will or healthcare proxy, makes these situations easier and less painful for everyone.
Creating a healthcare advanced directive is a huge help in easing stress if medical emergencies arise. But the conversations you have with your loved ones to help make sure their wishes are followed are even more important than the document itself. Imagine doing all the financial planning in the world but keeping the passwords to your accounts locked away — that’s not very useful to anyone.
At some point, you may be asked to make hard health decisions for your parents. They could have spent their whole lives planning for retirement without telling you what they’d want in an emergency or if they get diagnosed with serious illnesses. To avoid that and get peace of mind, broaching the topic is imperative, even if it feels uncomfortable.
Although no two conversations will look the same, here are some important themes to cover:
- Talk about what quality of life means to your parents.
- What gives their life meaning?
- What is so important that they couldn’t imagine living without it? (Walking, communicating with loved ones, specific hobbies they love? Or simple pleasures: one well-known palliative care physician’s father said he would want to be kept alive as long as he could watch football on TV and eat chocolate ice cream.)
- Under what circumstances would they not want their life prolonged?
Down the road, it might be be helpful to get into more specific situations. For example:
- Would they would want to be kept on a breathing machine if their doctors didn’t think they could get better?
- Would they want to live longer even if they were having difficult-to-treat pain?
- Of course, those are hard places to start, so covering what’s meaningful is a good first step.
Why does this matter? Doctors can better respect your parents’ and your family’s wishes if you’ve discussed them ahead of time.
I took care of a man who was very ill and started on temporary dialysis in the intensive care unit. He had written an advanced directive ten years earlier that his brother emailed to us. It included language like, “If the doctors thought I had a 10 percent chance of surviving with aggressive interventions, I would be willing to try.”
I certainly don’t think people need to say numbers or specifics, but his words provided a starting point so we could make recommendations for his care.
Lastly, remember that you are already taking a lot of the burden off your parents by thinking about these conversations now! Illness inspires reflection on many challenging topics, like changes in a person’s independence and what kind of timeline they can plan for. The goal of these discussions is not to predict any specific scenario, but to prepare for in-the-moment decision-making when someone’s health changes. Sometimes a patient will really want to talk about these topics, but their loved ones find it too difficult or worry it’s taboo. So by starting the conversation when they are healthy, you are already making things much easier for everyone down the road.
By Lulu Tsao - an internal medicine resident at UCSF interested in palliative care and end-of-life planning