Hospice Girl Friday | ‘Staying True to Yourself In the Face of Illness’

"I am going to do everything I can to still be me while I go through this.”

Young, happy woman on a beach at sunset, raising her hands in the air

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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.

The first time I brought Hazel, my brother’s Guide Dog Foundation puppy, into the hospice with me we visited several patients at the nurse’s request. One patient in particular responded so positively that I brought Hazel in again a few weeks later. This time I was looking forward to introducing Hazel to Lizzie Goode-Hart, a 30-year-old patient with pulmonary fibrosis–someone with whom I was becoming friendly and who I thought might enjoy Hazel’s company.

Most patients only stay in the in-patient unit for a few days before they go home or pass away, but Lizzie was becoming one of our rare long-term patients. I had several conversations with Lizzie and always left my shifts feeling uplifted and impressed by her positive attitude and ability to live her waning life so fully. Normally I try to maintain a compassionate distance when interacting with hospice patients in order to avoid getting close to someone I would only know for a short while. With Lizzie, I was drawn into her positive energy right away and knew that I could learn a great deal from her about living and dying gracefully. Early on I made the decision that I would rather risk the grief that would come from losing her than deny myself the gift of getting to know her.

The fourth week of Lizzie’s stay I knocked on her door and walked in with Hazel. “I brought someone to meet you,” I said. “This is Hazel. My brother is raising her to be a service dog.”

Lizzie was sitting up in bed with her computer and two cellphones on her lap, just as she was when I left her the previous week, but her room looked completely different. The bed was covered in a turquoise and coral comforter and Lizzie was leaning back on large matching throw pillows. A geometric print rug covered the floor and on the shelf above the bed were several framed photographs, a dried flower arrangement, and a 12-inch tall wooden statue of smiling Buddha. A floral scarf covered the shade of the single floor lamp which now bathed the room with a cozy, warm glow. I felt like I was in her bedroom at home.

Hazel walked over to the bedside so Lizzie could give her a big hug. “What kind of service dog will Hazel be?” Lizzie asked, looking at Hazel. I quickly ran through my mental checklist: Lizzie’s voice was strong; her eyes were bright and clear; her breathing quiet. All green lights for me to stay and visit with her.

“Probably a seeing-eye dog, but she might be a companion to a veteran. Depends on how her training goes.”

“My cousin is raising a service dog,” Lizzie said, “a German Shepherd. When I first got sick and wasn’t breathing well on my own, my cousin brought the dog over to stay with me. Do you know, that dog slept on my bed and whenever my breathing slowed to a dangerous pace, the dog woke me up so I would start breathing again?” Lizzie was petting Hazel as she talked. “It’s so great that your brother is raising Hazel. I’m sure she’s going to help someone who needs a companion like her, just as my cousin’s dog helped me.”

We continued to talk for several minutes about a wide range of topics–Lizzie asked question after question–before she glanced at her watch and said, “I’m so excited. My hairdresser is coming in a few minutes to color and style my hair. I don’t know how long I’ll be around, but as long as I am I want to look good, you know?”

I nodded, but I was thinking, ‘Why bother?’ Then I decided to continue the conversation that Lizzie started since she talked so openly about the fact that she was dying.

“I have often wondered, when would I stop caring about how I look? If I were terminally ill, would I keep getting my hair cut every three months? Would I say ‘yes’ to dessert more often? When would I stop flossing my teeth?”

Lizzie laughed at first and then said, “I decided I am not going to let this disease kill my soul. It is killing my body, but no ma’am, not my soul. So I am going to do everything I can to still be me while I go through this.”

“Well, you go girl! You’re an inspiration to me and to all people living with a lousy disease,” I said.

This exchange was unlike others I have had with hospice patients in the past. I encourage most people, including the patient Hazel helped previously, to talk about themselves so they can remember who they were before they became hospice patients. Lizzie had a unique way of making a conversation much bigger than herself, as though she wanted to broaden her world as much as she could.

Lizzie was about to say something when we heard a tap on the door. A woman about Lizzie’s age walked in carrying a small tool box and a blow-dryer.

“You must be the hair stylist we’ve been waiting for,” I said, tugging on Hazel’s leash and leaning over to give Lizzie a hug goodbye. “See you next week,” I said.

As I drove home I wondered if Lizzie seemed different to other patients I’ve met because I decided to approach our relationship more openly, or if it was because she actually is unlike any of the others. Either way, I am still glad that I have let my guard down to make this personal connection, which I hope is enriching Lizzie’s life as much as it is mine.

Previous post: Getting too close to a terminal patient Next Post: Planning for ‘After’

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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