It’s the job of all clinicians to guide patients and their loved ones through the experience of death. Offering support and being present can help them navigate the end of life.
“I don’t know what to expect, I’ve never seen someone die before,” my patient’s loved one said. I’ve heard a version of this statement many times. Often, they’re looking to their medical teams to provide guidance. Clinicians sometimes feel uncomfortable talking about the dying process or being physically in the room when someone is actively dying. It’s normal to feel unprepared to enter the room of someone who is dying, to worry about what you will say. But it’s also our job to be present and help our patients and their families navigate a process that is both natural and impossible to prepare for. Here are a few tips on how to prepare yourself for such a visit.
1. Leave your agenda at the door.
Meet the encounter with openness. Ask yourself what your patient and their family needs. It might be that you enter the room, greet the family and patient, do an exam, and ask what questions you can answer. Or it may be that you go in to see a distressed patient and need to enlist help to get a medication bolus. Whatever the case may be, remember you set the tone in the room, so providing a calm presence is helpful.
2. Be ready to explain what dying could look like. Ask if they would like to know what may happen.
Practice saying, “They will likely get sleepier as their body shuts down, whether we give medications or not. Some people get confused. You may notice their hands and feet feel cool to touch. Their breathing pattern may speed up or slow down. Sometimes there are long pauses between breaths. We look for nonverbal signs that they are uncomfortable (like grimacing, rapid breathing, restlessness), and give medications for pain, shortness of breath, or anxiety.”
3. Assume the patient can hear what you’re saying and feel touch, even if unresponsive.
Encourage people at the bedside to talk to them, hold their hand, and play their favorite music. Always greet the patient when you enter the room and tell them what you’re doing during the exam, even though they may not respond.
4. Acknowledge uncertainty in timing.
While there are many signs of dying, almost none of them will tell you exactly when someone will die.
5. Go slowly.
Give permission for the people in the room to ask you to leave or to stop talking. Check in often. You can ask, “Would you like to know more, or is this a lot already?” Be willing to keep the visit short and come back later.
With thanks to Dr. Christopher Pietras, who taught me about leaving my agenda at the door.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.