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Hospice Girl Friday | Planning for ‘After’

Published: February 14, 2014


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.

Most of the conversations I have with hospice patients or their family members are focused on the past and instigated by me. I like to learn about the patients, and I want family members to remember who their loved ones were before the shadow of disease began to darken their lives. Recently I had a surprising conversation about the future with the husband of a patient who was admitted at the end of my Friday morning shift. The patient was Bernice Scott. Seventy-one years old. Heart disease.

Mrs. Scott’s husband Robert came in with her, toting her favorite red-striped crocheted afghan and her medical records. I greeted him at the front desk.

“My wife is in pain and needs medicine right away,” he said as he watched the stretcher carrying his wife disappear into room one.

“The nurses are with your wife right now. They’re going to do an assessment and talk to the doctor about medication right away,” I said, trying to sound assuring.

His brow did not unfurl. “Where is the doctor?” he asked, looking around.

I walked around the desk to guide Mr. Scott to the sofa. “The doctor is with another patient right now. May I get you a cup of coffee?” He shook his head no as he lowered himself onto the sofa. I tried to warm him up with small talk, but he was too far away to respond with anything other than single syllables. I could tell he did not want me there.

Most patients come to the hospice in crisis. And while hospice is meant to make dying patients comfortable at the end of their lives, one of my roles is to help make their family members and loved ones comfortable as well. Unfortunately, at that moment there did not seem to be anything I could do to ease Mr. Scott’s emotional pain, so I sat down next to him for just a moment and said, “Your wife is in good hands. I’ll let you know when the nurses are finished, and if I can help you with anything in the meanwhile, please ask.”

Once the nurses finished in room one I gave the Scotts some time to get used to their new surroundings before knocking on the door. When I walked into the room Mrs. Scott was lying flat with her eyes closed. She must have heard me come in because her eyes popped open and she asked for peanut butter and marmalade. She must have been feeling better if she was asking for food.

When I came in the following week, I asked the nurse for an update on Mrs. Scott and was told that she was sleeping a lot and had stopped eating the previous day, which is usually a sign of impending death. When I walked into her room, Mrs. Scott seemed to be comfortable, taking long, deep breaths as she slept. Mr. Scott was sitting in a chair next to the bed with a book on his lap, which he closed when I walked in. This time he was ready to talk.

“Coming here was the best thing we could have done,” he said. “My wife is much better, out of pain. Now it is just a matter of nature taking its course.”

“I’m glad to hear it,” I said. “How are you doing?”

“Also better, but I am going to miss her.”

“How long have you been married?”

“Forty-two years. All of them good. Great, in fact,” he said, smiling. “I retired in 2005 so we could travel and go to museums. But five years ago my wife got sick and encouraged me to consider working again in some way, so I went back to school for a teaching degree. Now I teach college classes Monday through Thursday, which will keep me busy. I will go to a museum or a lecture on Friday. Weekends will probably be difficult at first, and I am not looking forward to the quiet that will greet me when I come home and turn the key in the door. Also I have a friend who is a widower and likes to travel, so I said I would go wherever he’d like. And I’ve been seeing a psychologist, which has been very helpful.”

Instead of talking about the past, it was important for Mr. Scott to explain to me–and possibly reassure himself–that he was prepared, that he would be okay after his wife passed. In the hospice we never know when death will come, we only know that it will. That moment often defines ‘before’ and ‘after’ for the people who are left behind.

I have talked to many family members who have told me they can’t imagine a different life or will not be able to go on without their loved one. I try to help them conjure positive memories that might help temper their dreaded grief. Mrs. Scott’s husband knew that she would pass away first, leaving him to forge a new routine and fill the silences her absence would bring. I admire the way he looked to the future and systematically put together a plan for ‘after,’ which also seemed to help him cope with his beloved wife’s last days and moment of death.

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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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