It’s hard to talk about getting sick and potentially dying. That’s probably why only one out of every four Americans has an Advance Directive (AD) and why distraught family members struggle mightily with what treatments to authorize for a critically ill loved one.
Here are some tips for having those difficult discussions:
- Reframe the discussion: Instead of viewing advance care planning as morbid or depressing, view it as giving a gift to one’s family members. We like to take care of the people we love, and sparing one’s family from gut-wrenching decisions is a way of taking care of them all the way through one’s life, right up to the very end.
- Time the discussion: Start talking about advance care planning when the patient is doing well. It’s less threatening that way, and it provides a foundation from which to start when—as happens for us all—one’s health begins to decline.
- Have a normal conversation, not one in medical language: Advance care planning conversations often revolve around procedures like CPR and intubation, but it’s much more helpful to talk about personal goals and hopes and dreams. Once the goal is determined, it’s easier to see if certain procedures will help achieve that goal.
- Start by talking about life: Rather than focusing on death, start by talking about what makes life worth living. For some, it’s taking a walk on the beach. For others, playing with kids or grandkids. Or maybe reading a good book. If it’s clear what a patient needs to be able to do to lead a contented life, the medical team can work toward that goal.
- Name a decision-maker: It’s impossible to predict the precise situation when a patient will become unable to make their own decisions. So rather than trying to anticipate any eventuality, just identify someone who knows you well and can advocate for your beliefs, no matter the situation.
- Acknowledge that there are good deaths, and there are bad deaths: In the end, there’s no getting around talking about death. It’s one of the few certainties in life, but it’s also something that people look at differently. Some people want to be absolutely comfortable (even unconscious) when they die. Others are willing to accept some pain or discomfort in exchange for being lucid and aware, and interacting with the people they love. Describing what a good death looks like gives the doctors something to work toward, when the time comes.
Visit Palliative Care and End of Life Care at the UVM Medical Center for more information.
Robert Macauley, MD, is the Medical Director of Clinical Ethics and a palliative medicine physician at the UVM Medical Center. He is also an associate professor at the Larner College of Medicine at UVM.