I recently sat in on a terrific session at the 2016 Hospice Team Conference in NJ. about the importance of narrative in hospice care, presented by Jeremy Lees, LSW , chaplain and bereavement counselor at Holy Name Medical Center’s hospice, where I am a volunteer.
It started me thinking about how important it is that we write or record the story of our life — not only for our loved ones, but also for ourselves. To make sense of the arc of our life, our place in the world, our sense of purpose. And the best time to do this is when we’re healthy and vital!
Here’s my latest blog post from SixtyandMe, with some tips about how to get started.
Not everyone understands what hospice care is, or what hospice care teams – physicians, nurses, home health aides, social workers, chaplains and volunteers – actually do. Not only for people who are very ill, but for their caregivers, too.
So, educating the public about it continues to be critically important. One unique and moving way to do that was organized by the Louisiana-Mississippi Hospice and Palliative Care Organization: a traveling exhibit of artworks created specifically to convey “the compassion and dignity that hospice provides,” LMHPCO executive director Jamey Boudreaux told me.
It took a lot of thought and a fair amount of time to organize the project. A competition was launched in 2013 at the organization’s annual conference, where member hospices were encouraged to find an artist they could work with. But before the artists could apply paint brush to canvas, to get a better sense of the work, they were to go through hospice volunteer training and then spend time shadowing hospice team members. After that, they created a variety of works in different media, including paintings, sculpture, stained glass and photography. In 2014, a group of art critics and artists judged the work of 40 artists, representing 40 member hospice agencies, and selected the 16 finalists that would make up the traveling exhibit.
Shown here is artist and musician Tammy Hromadka’s “A Window Into Hospice.” Ms.Hromadka volunteers at CHRISTUS Cabrini Hospice’s Grace Home in Alexandria, Louisiana.
As Jamey Boudreaux pointed out, though, “The Art of Hospice” wasn’t just an art exhibit. Over an 18-month period, each of the 10 venues in Mississippi and Louisiana also presented educational courses for physicians, nurses, CNAs, chaplains and volunteers. The public at large also attended sessions devoted to advance care planning. The exhibit stayed in each venue for three or four weeks.
“It raised the level of awareness about hospice in these communities,” Boudreaux said.
Still, LMHPCO found that there was much misinformation or misunderstanding to address about what hospice is all about. Some people were unaware, for example, that hospice is not just “the government coming in to take over for family members,” Boudreaux explained; or that it does not provide 24-hour care; or that there are private agencies – nonprofit and for-profit – that provide this care.
The traveling exhibit involved many logistical challenges and was a one-time event. Boudreaux has talked about the art project with fellow hospice organization executives, but so far none have sought to replicate what LMHPCO did. Most of the artworks have been returned to the artists and the remaining few soon will be returned.
So what does the education committee of LMHPCO do for an encore? The focus will be on providing care for the homeless and for those who are the so-called “un-befriended” — people who do not have caregivers, at the organization’s upcoming conference. I’m eager to see its creative approach to professional and public education after that.
Did you know that November is National Hospice and Palliative Care Month? It is, thanks to the efforts of the National Hospice and Palliative Care Organization. It’s a month devoted to broadening public awareness about the outstanding and much-needed care that hospice organizations provide for the very ill and their caregivers.
So I thought I’d do my part. I’m excited to announce the upcoming publication of my book, “Last Comforts: Notes From the Forefront of Late-Life Care.” Why did I write this book and start this blog?
I was drawn to hospice care because its caring and profoundly respectful philosophy and practice offers physical and emotional comfort, support and kindness to the dying and their families. My family experienced that first-hand with my mother’s last illness, a stark contrast five years after my father’s more conventional medicalized, nightmarish last months. So when I had an opportunity to sign on for hospice volunteer training at Holy Name Medical Center, I took it.
“Last Comforts” was born when one nagging question kept arising early in my journey as a hospice volunteer. Why were people coming into hospice care so late in the course of their illness? That question led to many others that rippled out beyond hospice care. Are there better alternatives to conventional skilled nursing home operations? How are physicians and nurses educated about advanced illness and end-of-life care? What are more effective ways of providing dementia care? What are the unique challenges of minority and LGBT people? What is the role of popular media in our death-denying culture? What has been the impact of public policy decisions about palliative and hospice care?
The book is part memoir of lessons learned throughout my experiences with patients and families as a hospice volunteer; part reporting about the remarkable pathfinders and programs in palliative and late-life care; and part call to action. I encourage readers – particularly her fellow baby boomers — not only to make their wishes and goals clear to friends and family, but also to become advocates for better care in the broader community.
It’s no secret that care at the end of people’s lives right now is mostly fragmented, uncoordinated, often futile and unsustainable. But without question, it can be managed far better for those who are ill as well as for their caregivers. I’m hoping that “Last Comforts” – and this blog — will help shed light on how we can help make that happen.