"About A Young Patient"

Photo by Silvestri Matteo

Introduction: "Diary of a Death Doula"

   “Providing support for others, no matter where they are in their lives, can be life affirming and bring immense comfort. Those who feel isolated receive the message that they count. Someone took the time to care about them and they haven’t been forgotten. They’re not just some hospice patient who is waiting to die, but someone alive and worthy.” - Debra Diamond, Ph.D.

   I came to hear about Diary of a Death Doula when I started diving into research about the End-of-Life process and the doula path. This excerpt begins with an experience from the author’s first day of training in hospice care. Listening to the audio book, I was stopped in my tracks and knew it was something to give my close attention. I began to think about my own life and that I too would transition one day. This book help solidify my decision to seek out training as a death doula. The author and their mentor, Matt, were with an unresponsive patient, when they got an unexpected request....

“Death is Not About Dying. It’s about Living" [8:38]

"A nurse enters the room while Matt and I visit this patient. “There’s an angry patient in another room who is demanding to go outside”, she says. She glances at me and adds, “Patients are only allowed outside with supervision.” She apologizes for the patient's behavior and says to prepare ourselves. Assuring her we’ll head there immediately, we start down the hall passing orderlies and aids carrying trays of food to patients. I wonder what will happen next. Will the patient order us to leave? Will she be hysterical? I’m acutely aware that I don't have any counseling training and this will be trial by fire. I shudder as I think about what I’ve gotten myself into."

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“Another Young Patient"

"Before entering this patient’s room with Matt, I take a deep breath, center myself, and think about how I can best be of service. But as soon as I’m inside the room, I feel comfortable and relaxed. She and I have a wordless connection. “I can do this”, I think. The patient, Candace - a thirty year-old woman, wears a violet, knitted cap on her completely bald head. She’s lost her eyebrows and eyelashes, too. She looks vulnerable and so very young. She’s in a hospital gown and the back gapes open as she moves about the room. The patient is crying, twisting the ties on her hospital gown ‘round and ‘round her fingers as she sobs. Her face is puffy and I assume she must be on steroids. The young woman is ambulatory, meaning she is able to walk, carry on a conversation, feed herself, and participate in activities. Yet, she’s in hospice."

Photo by Daiga Ellaby

"Patients sometimes enter hospice, are discharged, and don’t come back for months. Sometimes even longer. It happens… Maybe it will happen with this patient. We chat for a couple of minutes and I mention that I like her nail polish, which is a shade of lilac. Candace brightens when I say the color reminds me of a beautiful lilac bush. There’s a stack of adult coloring books on her dresser and we chat about them. Using these coloring books is meant to be a relaxing and stress relieving activity for her and other patients."

   "I ask how she likes them as Matt listens in. “I’ve been coloring in them every day”, she says. “Sometimes it’s the only thing I do.” Candace continues crying as she talks about her books and nail polish. This reminds me of an encounter I might have with someone at a beauty salon; except this woman is bald, crying, and in a hospital gown in hospice. I notice then that everything in her room is violet, the color of Spirit. I wonder if the patient picked it out on purpose or if it just happened that way. I note the violet headrest, a violet notebook… even her hospital gown is violet. No matter how it happened, I have a feeling it’s not a coincidence."

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Photo By Camylla Battani

"Candace says she’d like to go outside, so the three of us make our way to her private patio, accessible through the french doors on the side of her room. The patio is landscaped with flowering trees and looks peaceful and welcoming.  “Would you like company?” I ask. She shakes her head. That’s her prerogative, but we still have to be with her since patients can’t be outside on their own. I walk behind her and close the flap on her gown as she makes her way to one of the two, Chippendale wood benches facing each other. She takes a seat and places her coloring book and bag of colored pencils beside her. It’s stopped raining and Matt and I position our chairs to take full advantage of the sunshine."
​
"On the patio, it's still and hot, and all around us birds are chirping. I watch as Candace chooses her pencils. She colors quietly, and even thought it's peaceful - tears stream down her face. Every once and a while, she twists the ties of her gown and continues coloring. As I observe her, I feel a strange sensation in my chest; a sort of pang. Grief. That's what I'm feeling."

​"After a while, I walk over and stand next to her. She looks up as if she's wondering what I'm doing there. "Do you need anything?", I ask. "No", she says and looks back down at her coloring book. I glance at her work and see images of mandalas and sacred geometry, colored in soft lilacs, delicate pinks, bright reds; the colors of the chakras. What she's done is intricate and seems to help her enter into a meditative state. At least she's stopped crying for now."

Photo by Swati H. Das

""An hour later, the nurse returns to say we're needed elsewhere. This brings the patient to tears again as her brief stay outdoors is over. Since it appeared to do her so much good, I'm desperate to keep her outside. I try to think of a way to keep her out in the sunshine and ask the nurse if we can leave her on the bench on her patio. The nurse shakes her head. "No, someone needs to stay with her." Hospice looks so homey, but I also realize it's a medical facility with rules and regulations that we must adhere to."

"I speak to the patient for a few more minutes. Matt does not speak - partially to make way for me to do the initial interaction. Partly because he sees I have a sense of this patient, so I lead the way. We chat about her coloring, the blossoms on the flowering shrubs. I let her lead the conversation and she tells me she'll be going home in a few days.

"I bet you're looking forward to that", I say. She nods.
"But I'm anxious too. Sorting things out is very complicated." "
"What would be helpful?", I ask. With a shrug she says, "I'm not sure. Support, I suppose." I ask her about her family and friends, and make a few suggestions including therapeutic support. She uses her colored pencils to make notes. When we finish, she seems calmer and has stopped crying. At least for now. 

As Matt and I leave, I think about how talking with her seemed to help, at least for the moment. I hope it relaxed her, too. Her attitude seems to have shifted and I hope it will stay that way for a while. I’m sorry we have to leave and say that I’ll stop by and visit. It surprises me when she reaches out and I feel her soft hand press against mine."

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"Sacred Reflections" [2:01]

“When we first entered her room, Candace was shut down. She was no doubt thinking about dying and probably feeling isolated and angry. As she colored and became engaged though, she seemed to move beyond this, at least momentarily. As she became occupied and we conversed, her mind seemed to get off her troubles. She was no longer just a hospice patient, she was someone who mattered.”