Palliative care appears to be near a tipping point, both due to increasing demand and the ways in which home health agencies and other health care providers are figuring out how to offer and pay for it. While access to palliative care has spread in recent years, awareness and availability of these services is still considered slim.
Palliative care is centered around providing care to those with serious illnesses, no matter the diagnosis or stage of their condition. Regulatory constraints for this type of care have kept it mostly within hospital settings until recently, as more home health agencies have set out to tackle these needs.
Prompted from her own experience with a loved one passing unexpectedly, artist Candy Chang set out to reconnect through the best way she knew how: Art. As a New Orleans-based artist who focuses on interactive projects in public settings, Chang created a chalkboard wall on the side of an abandoned building in New Orleans. She stenciled the words “Before I die I want to…,” and left spaces for passerby to write in an answer with chalk.
The project bloomed with dozens of responses overnight and has since spread to over 1,000 cities and 70 countries across the world.
Emotional public art is an opportunity for everyone to connect and “make sense of the beauty and tragedy around us,” Chang said at the American Academy of Hospice and Palliative Medicine (AAHPM) & Hospice and Palliative Nurses Association (HPNA) Annual Assembly in Chicago last week. By placing the emphasis on the end of life with this project, the conversation is a natural stepping stone to the growing importance and acceptance of palliative care.
“In order to die well, we need to learn how to talk about it,” Chang said, speaking to members of AAHPMN and HPNA.
Palliative care offers those with serious illnesses—both short and long term—more options with a focus on improving the quality of life. Public support for palliative care and end-of-life planning with medical professionals has swelled in recent years, but talking about death and care for those with serious illness is still complicated and difficult.
What Chang accomplished in her project was open up the conversations that are difficult to have—both with doctors and family members—whether under the circumstances of a serious illness or not. The chalkboards provided an anonymous outlet to share ideas, memories, anxieties and aspirations that are emotional and complicated.
Talking about death is often discouraged, which can make the proposition of talking about care plans a challenge, Chang acknowledged during her presentation to the assembly. Translating emotional decisions into a real conversation about care is a feat that some states, such as California, have taken on through end-of-life care laws that are somewhat controversial.
Fortunately, there is some momentum to expanding these types of services and bringing end-of-life conversations mainstream. As more awareness is brought to palliative care and the broader discussion of care plans, payer systems are catching up. Last fall, the Centers for Medicare & Medicaid Services (CMS) proposed to include some changes in the Medicare Physician Fee Schedule for 2016 that would allow doctors to bill for end-of-life care conversations with patients.
“Dying well must become an obligation,” Chang said during her speech, quoting author Stephen Jenkinson.
Written by Amy Baxter
Featured image by Tony Webster.