Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.
In addition to the nine private patient rooms in my hospice there is a large living room that is separated from the administrative area by half-walls that corral off the space. The volunteer desk is closest to the sofas where hospice staff often meet with family members to discuss patient status and care. I overhear those difficult conversations when I am at the desk and I always wonder how the doctors, nurses, and social workers learned to compassionately deliver the kind of news that no one ever wants to receive.
Last week Peggy Barre was in room 11. Seventy-five years old. Kidney cancer. She had come to the in-patient unit from home care the previous evening because her family noticed she could not get comfortable. When I arrived, the nurse asked me to sit with Mrs. Barre, who kept trying to get out of bed. “Sometimes it takes a little while for a new patient to settle in. Mrs. Barre’s husband is on his way, so we’re hoping she will calm down when he gets here,” the nurse explained.
The nurse walked into the room with me and introduced me to Mrs. Barre, who had one foot hanging over the side of the bed and was trying to push herself up off of the mattress. Her eyes were open wide as though she was looking at a frightening faraway ghost, and she did not acknowledge me when I spoke. Her anxiety and anguish were typical symptoms of terminal restlessness, a type of delirium that is fairly common in dying patients. Trying to get out of bed and pulling out oxygen tubes or IV ports are the most common symptoms I’d seen as a hospice volunteer, telltale signs that death is imminent.
Sitting with Mrs. Barre I was reminded of how my friend Leslie kept throwing off her bedclothes toward the end of her life and in a final burst of energy opened her eyes and demanded “Get me out of here, Devra.” At the time I had not heard of terminal restlessness and simply believed her beautiful, buoyant soul was trying to get out of her diseased body. As she pulled off her oxygen tube I got as close as I could and responded. “Leslie,” I said, “I am trying to help you get out of here. We all want to help you get out of here,” I said, looking around the room at her family. “Please, you are free to go.” I wanted to assure her–and myself–that we were all supportive of her need to leave. And we were, because by then cancer had won the battle and we all wanted Leslie’s suffering to end.
I held Mrs. Barre’s hand as she relaxed against the pillows for a few moments, and then popped up with a start over and over again. Each time her facial expression pulled back tighter and tighter. I was lifting her left leg back up onto the bed when her husband and daughter came into the room.
“She’s been very restless, like she has someplace to go,” I said. “I’ve been trying to keep her from getting out of bed.” I stood up to make room for them to get closer to Mrs. Barre, and then I quietly went back to my desk. A few minutes later Mr. Barre came out of the room to talk to the doctor who was already waiting for him on one of the sofas.
“Your wife seems very agitated,” she said. “She has been thrashing around a lot and her body is full of tension, particularly in her face. Did you notice how frightened she looks with her mouth pulled back tight and her eyes open wide and unfocused?”
Mr. Barre nodded quietly then said, “She was fine up until last night. What happened?”
“With late-stage cancer, symptoms can change abruptly,” the doctor explained, making direct eye contact with Mr. Barre. “The pain and anxiety medications that we have been using are no longer working to keep your wife comfortable.”
“So what do we do now?” Mr. Barre asked.
The doctor sat forward, took Mr. Barre’s hand and said, “Your wife’s symptoms indicate to me that she is suffering from terminal restlessness, an emotional and physical struggle we see in some patients as they transition. Given the tense, fearful look on her face and the way she is constantly startled and trying to get out of bed, I think the kindest thing we can do for your wife right now is sedate her.”
Mr. Barre started to cry. After a few moments he asked, “If we do that, will she ever come back?”
“No, she won’t,” the doctor explained, still holding Mr. Barre’s hand. “But her disease is at the very end stage so she is not going to come back either way, which is why I believe sedating her is the kindest thing we can do.” The doctor repeated her recommendation to make sure Mr. Barre understood. They sat quietly for a few more moments and then the doctor suggested Mr. Barre discuss the option with his daughter before making the decision.
We expect that once a patient commits to hospice care (or is committed to it by a loved one), death will be peaceful and the journey comfortable. After all, that is the very premise of hospice. Mr. Barre was not prepared to make any further ‘final’ decisions beyond choosing hospice care. Very few people are. I have never had to make that decision for myself or for someone I love, but when the time comes–and the time will come–I hope to have a reasonable, compassionate doctor like the one in my hospice to guide me through what could be a very difficult process.