https://www.infirmiere-canadienne.com/blogs/ic-contenu/2022/12/19/jocelyn-brown-infirmiere-en-soins-palliatifs
Collaborated with artist on new book to share stories of grief and hope
By Laura Eggertson
December 19, 2022
Courtesy of Jocelyn Brown
“To be able to do a comprehensive pain assessment with someone, come up with a plan of care and to see them crying in pain one day and then be smiling the next day because they are no longer in pain — that is such a gift,” Jocelyn Brown says.
Thirty-four-year-old Briella* was newly diagnosed with terminal liver cancer when Jocelyn Brown entered her room at the Princess Margaret Cancer Centre in Toronto.
Brown, a pain and palliative care clinical nurse specialist at Princess Margaret, was there to help Briella manage her symptoms and focus on her goals and quality of life.
She expected a frightened young woman, devasted after learning she had only three months to live.
Instead, Brown met “the happiest patient I have ever known, right to the end,” she recounts in her book, Love & Loss.
In pain, her belly swollen from cancer pressing the other organs in her abdomen, Briella danced beside her hospital bed. She sang in the shower a few hours before her first chemotherapy treatment. She asked each visitor how they were doing.
“The fact that she could face her own dying with such strength, courage and bravery just reminded me that it’s possible,” says Brown.
“We all need to be able to tap into joy and recognize we can hold great joy and great sadness in the same moment.”
Although Briella was exceptional in the way she faced her illness and death, Brown, 44, finds grace in the experiences of all her patients, including in the rawness of their grief, she writes.
Jocelyn Brown and Ramune Luminaire are participating in the Dying.exhibits festival in Toronto, January 20-29, 2023, where their book, Love & Loss, will be featured.
Courtesy of Jocelyn Brown
Jocelyn Brown collaborated with visual artist Ramune Luminaire on Love & Loss to normalize grief and dying. Proceeds from the book support children at Camp Erin, a weekend bereavement camp in Toronto.
Book aims to normalize grief and dying
She collaborated with visual artist Ramune Luminaire on Love & Loss to normalize grief and dying. The striking combination of original artwork and stories, meditations, poems and musings is based on journal entries and notes Brown made during her 18 years as an oncology nurse, 13 of them in her current role.
(All proceeds from the book, available from Luminaire’s website, support children at Camp Erin, a weekend bereavement camp in Toronto.)
Palliative care is about improving the quality of life for people living with cancer, Brown stresses. What draws her to the specialty is its holistic approach to learning a patient’s whole story and addressing their physical, emotional and spiritual needs.
Hearing about a patient’s goals and framing care around them is a practice often lost in health care, Brown believes.
“What we do really well in palliative care is give a voice to the patient,” she says.
Ensuring patients have enough information to make decisions, helping them achieve their goals, respecting their wishes and maintaining their dignity are core principles of palliative care, she adds.
“It’s a rewarding and meaningful experience to have developed the skills to be in that space with people,” she says.
Providing pain relief is also a critical part of her job.
“To be able to do a comprehensive pain assessment with someone, come up with a plan of care and to see them crying in pain one day and then be smiling the next day because they are no longer in pain — that is such a gift,” Brown says.
The connections Brown makes with patients and their families during their most vulnerable moments are deeply satisfying, she says. They have transformed her perception of the depth and strength all of us can access.
The work is also heartbreaking.
‘Part of being human’
“Our hearts break — they break every day. That’s part of being human,” she says.
“Grief is a challenging part of life that we need to acknowledge and support.”
Learning to acknowledge sadness and grief alongside happiness as part of rich human experience is one of the lessons of palliative care, Brown says.
She grew up on Lake Erie near Harrow, Ont., south of Windsor, and came to palliative care after working in group homes for developmentally disabled adults and earning a B.A. in environmental studies from Wilfrid Laurier University.
Brown switched to an accelerated bachelor of science in nursing at the University of Toronto in part because of her experience working in the group homes, where many of the residents were non-verbal.
“You had to be very reflective and … learn how to bring a calm energy to a space that could be pretty intense,” Brown says.
The emotional regulation skills she developed while working in the group homes help Brown learn not to let any emotional state become all-encompassing. When she needs to rejuvenate, Brown turns to music and nature. She loves live concerts, especially indie bands like Sigur Rós, Son Lux and Perfume Genius, long walks, and the sense of playfulness her children Audrey, 10, and Hudson, 6, help her cultivate.
Although Brown’s patients are adults, she also works with their children, helping them to understand their parents’ illness and navigate those final goodbyes. One of the most moving passages in Love & Loss takes the form of a legacy letter she wrote for her own children.
“I started by telling them that, ‘If I am not physically with them, my love will forever be in their hearts and I will always be their mom,’” she says of the letter.
“My life’s purpose is to give as much love as possible and I hope yours will be the same,” she goes on to urge them.
Important to talk about the ‘big things’
Open communication with children around a loved one’s illness is critical to avoid regrets, Brown says. Her mother Judy Brown was a home-visiting hospice nurse who brought Brown to see her grandmother when the woman was in hospital with breast cancer. Still, no one told the then-10-year-old Brown her grandmother was dying.
“I would have given her a hug or done something differently,” Brown says.
That experience is one of the reasons Brown urges her patients to let children know the extent of a family member’s illness. Recently, she encouraged a patient’s sister to tell her nine-year-old daughter her uncle was dying and to bring her in to say goodbye.
The experience was meaningful for both the patient and his niece, she says.
“The little girl and the patient cried together and had a beautiful moment, and he died the next day,” Brown says.
Creating space for these moments to occur is another reason Brown loves her work.
“It’s providing people with an opportunity,” she says. “There are so many important moments that are missed when we don’t talk about the big things.”
Mentoring nurses is another vital component of Brown’s job. She supports other nurses as they help patients transition from clinical trials or courses of chemotherapy into more comfort-care treatment.
“It can be a very intense time for nurses,” Brown says.
Part of what she hopes they learn from her is how to encourage patients to explore all the different emotions that emerge during their cancer care, rather than only focusing on staying positive.
Sometimes, her care includes helping people reframe the hope they carry of becoming cured to hope for better symptom management or hope that each day be the best possible, she says.
Brown hopes sharing her stories and those of her patients, along with Luminaire’s images, will help nurses and other readers reflect on grief, suffering and death and provide hope for the human capacity to endure and support each other through these experiences.
“We are all here to teach each other the possibilities of how we can face our mortality,” she says.
*Briella is a pseudonym Brown chose. She changed all of the names and identifying detail of patients whose stories she recounted in Love & Loss.
Laura Eggertson is a freelance journalist based in Wolfville, N.S.
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