When a loved one is dying, there is no specific script to freeze the flooding of emotions and decisions a family faces.
But hospice nurse Maureen Groden believes bridges can be built through the power of storytelling to help guide families over the universal challenges faced as a loved one nears the end of life.
“It’s about telling stories and listening to them too,” said Groden, who has more than 30 years of experience nursing in the Valley.
In her recently published book, “When a Loved One is Dying” (Johns Hopkins University Press), Groden shares the stories of many of her patients anonymously, hoping to build understanding and quell misinformation surrounding hospice and palliative care.
“I hope to dispel a lot of those misconceptions,” Groden said. “As people hear about these stories and learn about what happens, they start to understand more.”
Groden, of Southampton, has served as the director of hospice and palliative care at several institutions, including Cooley Dickinson Hospital and the Holyoke Medical Center. A University of Massachusetts Amherst graduate, Groden returned to her alma mater to teach community health nursing, as well at Elms College and American International College in her past.
In her extensive experience nursing and teaching, Groden has had to orient new staff members to her team. She found that teaching through stories is more effective in helping them understand different processes, planting the seeds for her book.
For example, Groden said there may be a story about “Ray” who has colon cancer. The story will dive into Ray and his family’s emotions, but it will also outline the care he is receiving and why.
Groden explained that hospice care is designated for people and patients with a terminal illness, typically in the last six months of life. Palliative care is for patients with a chronic illness who may not be in the end stages of life, but both focus on providing comfort and alleviating pain, Groden said.
“We have families that ask us not to mention the word hospice,” Groden said. “We don’t accelerate death in any way and we don’t slow it down in any way. We just support people as they go through this very gestalt experience, but there is a stigma about it.”
Among the misconceptions Groden has heard about hospice care, are that patients have to get switch from their current provider to a new doctor or have to go to a certain location for care, when that is not true. She said that, in fact, the majority of patients receive hospice care at home.
What Groden has seen all too often is patients will enter hospice care too late. She said entering hospice care earlier relieves pain sooner and extends life. While she said sharing stories and helping people understand hospice care is important, it is also integral that medical providers start giving information sooner.
“It relies on medical providers to make good decisions to help people because the most recent research shows that having a palliative care consult or hospice care not only improves your quality of life, it also makes you live longer,” Groden said.
Groden said she never wanted to write a “textbook,” instead, she aimed to blend storytelling with educational information for readers to connect with her past patients while learning the proper steps to take under different circumstances.
With storytelling planted as the roots of Groden’s mission, she organized readings and listening sessions to coincide with the release of her book, which started in February. Groden has already visited towns including Westhampton, Southampton and Amherst, with more visits planned.
Sometimes people have a lot to say and sometimes people have nothing, Groden said, understanding that death is difficult to talk about. Regardless of whether someone speaks or not, Groden feels that visitors will walk away from one of her readings with more comfort, knowledge or insight than they had when walking through the door.
“It’s very hard to talk about because it’s painful, but people coming to these events and the community and being willing to share personal stories — not everyone does — but we have great conversations, and that’s part of why I wrote the book,” Groden said.
Groden will be hosting a virtual reading on April 1 at 6 p.m. hosted by the Elaine Marieb College of Nursing at UMass, to discuss palliative and hospice care. Her next in-person reading in the Valley will be held on April 9 in Westhampton, with a trip up to Greenfield planned for April 27.
Groden will also be venturing to Vermont, Maine and eastern Massachusetts, with a final visit to Northampton on June 17, where she will be featured as “Author of the Month” at the Northampton Senior Center.
To hear Groden speak or for more information on her book, “When a Loved One is Dying,” visit maureengroden.com.
