“What I really want is for you to listen to me, and then make sure … make sure I’m heard.”
These words were spoken by a fictional, terminally ill patient portrayed in the stage play “Lily,” written by Bryan Harnetiaux on commission from the Hospice Foundation of America (HFA).
This is one of several plays penned by Harnetiaux that hospice providers are now bringing to life in an effort to educate the public and their fellow clinicians about their services, advance care planning and other critical end-of-life issues.
The plays offered hospices a way to “think outside the box” when it comes to public education, according to Susan Turner, vice president of community programs and services for Accord Hospice in Arizona.
“It’s hard to pull people in the room when you’re talking about death and dying, so let’s find ways to communicate with them and help them to understand and sometimes even entertain them, like Bryan’s shows,” Turner told Hospice News. “And the ones that he wrote, all six of his plays, are fabulous.”
Hospices get in on the act
Accord Hospice is among the providers that are staging Harnetiaux’s plays. Currently, they are showing “Lily,” one of a series of three plays on advance care planning.
In the play, a gravely ill protagonist in her mid-70s has a conversation with Joe, a trusted loved one around the same age. The drama depicts Lily asking Joe to become her surrogate health care decision-maker, as well as her wishes for end-of-life.
It’s hard to pull people in the room when you’re talking about death and dying, so let’s find ways to communicate with them.-Susan Turner, VP, community programs and services, Accord Hospice
The actors in these performances include the hospice’s staff themselves and members of community organizations. In Accord’s production of “Lily,” a member of the local Rotary Club portrayed the title character with a hospice medical director in the role of Joe.
The first staging took place at a Rotary Club meeting to which the whole community was invited. It brought in “a good-size crowd,” according to Turner. Most of these performances have audiences of 15 to 25 people.
Accord has staged other performances at nursing homes and senior living facilities, and in school buildings and other community spaces that have enough room for the actors and audience. After the play’s conclusion, Turner presents additional information about hospice and advance care planning using the Five Wishes Project framework, as well as taking questions from the audience.
In addition to community education, the plays have become helpful tools in staff orientation, according to Turner.
“When you have a new group [of employees] come in, you can present this because it creates conversation,” she said. “That’s what these shows do; they create the conversation so that you can hopefully have a really wonderful discussion about the importance of advanced care directives and educate staff about having that conversation and how to speak to families in a manner that would be appropriate and helpful.”
Depicting ‘sacred work’
Harnetiaux’s journey toward writing these plays began 25 years ago.
A lawyer by trade, the Washington state-based playwright has also been Playwright-in-Residence at Spokane Civic Theatre since 1982. The sum of his work includes a gamut of plays, including some on end-of-life care, as well as literary adaptations and the life story of the only black man to participate in the 1804 Lewis and Clark Expedition. His plays have been performed nationally, and 13 have been published.
He began exploring mortality following the death of his father in 1987. He and his wife, Sue Ann Harnetiaux, each saw both their parents pass away in hospice care. These experiences led him to write a series of three full-length plays that addressed death and dying — “Vesta,” “Dusk,” and “Holding On-Letting Go.”
One day while in Montana, Harnetiaux heard a public radio story about a project by the hospice and palliative care physician and author Ira Byock that integrated theater into public outreach. So he decided to write Blaylock a letter.
“They were using theater, and so I had this play, ‘Vesta,’ and I asked if they would be interested in looking at that as a possible vehicle for conversation,” Harnetiaux told Hospice News. “Then out of that came a second play, ‘Dusk,’ that I did for a mainstream theater in Spokane, but it ended up being used by the Missoula Demonstration Project as well.”
He did not write these plays in a vacuum. In addition to his personal experiences with hospice, Harnetiaux spent a lot of time with local providers. He interviewed numerous hospice workers and accompanied some on home visits, which he describes as a “sacred experience.”
“I tried to see every stage of the process to make sure that it resonated and was accurate,” Harnetiaux said. “Seeing people under intense circumstances, trying to help them finish their lives well and serve their loved ones. It’s sacred work, and that’s what I tried to capture in these plays.”
[Hospice] is sacred work, and that’s what I tried to capture in these plays.—Bryan Harnetiaux, playwright-in-residence, Spokane Civic Theatre
That was just the beginning. Soon after, the Duke University Institute on Care at the End of Life licensed the two plays, using them for facilitating goals-of-care conversations. The team at Duke encouraged Harnetiaux to write more, which led to the third full-length play, “Holding On-Letting Go.”
About eight years ago, he began working with HFA to develop more plays, and those projects are ongoing
Collaboration with Hospice Foundation of America
HFA is a nonprofit organization dedicated to educating the public about hospice care and other end-of-life issues. The foundation also funds hospice research and projects and offers resources for hospices that have been adversely affected by disasters or other unforeseen events.
Harnetiaux’s plays are part of HFA’s “AD Project,” which is designed to foster greater utilization of advance directives. Hospices and other community groups are able to license the plays for one year at a time, which includes up to 20 performances.
His current plays being distributed by HFA are shorter, “bite-sized” pieces, compared to his earlier works. They are generally 10-minute productions involving two actors with time for discussion after the performance.
“I hope to help in getting these conversations jump started, to be able to openly discuss life and death and dying. I feel it’s often largely driven by just human nature and our tendency toward avoidance and denial,” Harnetiaux said. “One of the biggest things I’ve observed and tried to deal with is recognizing just how damned hard these conversations are. Avoidance and denial will help us get through the day, but I tried to compassionately look at how you break through that resistance.”