Hospice Girl Friday | Coming Home to Say Goodbye

This week, Devra remembers a family whose 27-year-old son chose to have his life support removed and end his battle with terminal cancer.

woman comforting teenage daughter while they sit on a couch

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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.

Our volunteer supervisor sent out an urgent request on a Tuesday: ‘We have a rather unusual situation in the IPU tomorrow, and I’m looking for someone who can cover the 12-3 shift…we will receive a patient via air transport from Atlanta. He is from this area and his parents would like to have mechanical ventilation stopped closer to home.’

I could not recall a patient on a ventilator in the six years that I have been a volunteer so I did not know what to expect. I only knew that help was needed. I responded immediately:‘Yes, I am available.’

My supervisor sent more information: The patient was a 27-year-old man being treated for cancer. Chemotherapy paralyzed him and he was put on life-support. The family could not find a local hospital willing to admit him and eventually they were referred to our hospice.

On Friday mornings the inpatient unit is quiet with only a few staff taking care of patients and paperwork. When I arrived for my special Wednesday shift, there were additional nurses and higher-level administrators preparing for the arrival of the patient and his family. I saw small teams of people discussing and rehearsing the plan for the day, carefully reviewing checklists like pilots before a flight. The atmosphere was tense.

My supervisor was standing with the regularly scheduled volunteer at the front desk. I walked over, said hello and asked for an update.

“The plane is delayed,” she said. “We’re expecting the patient around 2 p.m. His father is traveling with him. His mother and siblings should be here any minute.”

“What is our role?” I asked, nodding my head toward the other volunteer.

“One of you will need to man the desk and help out with the rest of the patients,” she said. “The other might be called on to assist the family when they arrive. We’re not exactly sure what to expect.”

I was about to say ‘I’ll help with the family’ when I heard the other volunteer say it first. I was disappointed, as though I were now less important. I wanted to be a part of the experience, not a spectator, and then I remembered that the other patients needed support too.

Just as we finished our conversation, the front door opened and a woman and two teenage girls walked in. The woman was tall, slim, and looked like she was in her mid-40s. She walked up to the desk, smiled and said she was the patient’s mother. She then introduced her daughters and explained that two older sons were on their way from the college they attended together. She was calm and composed, as if she were checking in for a doctor’s appointment. I said hello as the other volunteer walked around the desk to greet them and offer a tour of the facility, which the mother accepted. Her daughters shuffled behind her.

A little after 2 p.m., the patient arrived. As he was wheeled in on a stretcher I was surprised to see that he was conscious and alert. I had to catch my breath as I registered that the decision to remove the ventilator might have been his.

I know the patients I see are terminal and have opted out of curative medicine and heroic measures. For them the dying process takes a natural course as the body shuts down, and hospice care keeps them comfortable during that time. While this young man was just as eligible for hospice care as anyone else, I was moved by his choice to remove his life support, and wondered how his parents—or any parents, for that matter—would cope with that decision.

Once I regained my composure I looked up and saw the patient’s father talking to the mother. He was older, heavier, and used a cane to walk. His sons must have slipped in quietly, because the patient’s four siblings were now sitting on the matching sofas, each pinned to a corner like they were trying to disappear into the cushions. The father broke away and went into the patient’s room. The mother sat down in a chair between the two sofas with her back to me.

“Okay so we’re here to say goodbye to Michael,” she said, scanning the sofas for a connection. No one looked up, but the younger girl started to cry. She hugged herself.

“I need you to be strong and remember we are a family. We will get through this together,” the mother continued as she looked from child to child. Still no eye contact. The crying turned into sobbing. The mother kept talking.

“No one wants Michael to suffer, right? This is his decision and we have to respect it. He is never going to get better, remember, he has cancer.” The sobbing continued as the girl covered her face with her hands. I walked over and placed a box of tissues next to her. The other three children sat as rigid as the furniture.

I hurried back to my desk to try to separate myself from their pain, but the girl’s sobbing was inescapable. I turned toward the nurses and other hospice staff and saw that we were all fighting back tears. None of us spoke while we listened to Michael’s mother try to console her children.

About 20 minutes later another volunteer came in to relieve me. I did not know when Michael’s procedure would begin, but I was grateful to be leaving before it did. (I learned that the ventilator was removed that evening; Michael passed away about 18 hours later.) I was surprised and disappointed that the situation and the family’s grief were too much for me to bear. I thought I was stronger and more able to step outside of my own emotions to help others deal with theirs.

I called my mother on my way home from the hospice. She’s always said that losing a child is every parent’s nightmare, and I wanted to tell her that even though I am not a parent, I finally understand what she means. She told me how precious life is and how lucky we are—my parents, brothers, and I are all alive and well (knock on wood). That day, just hearing my mom’s voice soothed me, as it always has. I hope Michael’s parents, brothers, and sisters find a way to comfort each other, too.

Previous post: Just Being There Next post: The Power of Listening

Bonus: For more on end of life care from a physician’s perspective, see How Doctors Die from our March/April 2013 issue.

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