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Life is a journey and, says Brookes Cowan, lecturer of sociology, videographer, and end-of-life volunteer for the Vermont Visiting Nurse Association, so is death.

As people are dying they have an opportunity to learn, grow and teach people around them. I am always asked, Dont you get depressed working with dying people? Cowan says. Those in hospice say we are energized and revitalized by this work. We consider it a gift to witness the process, because we're always learning as we sit and support these people.

The Latin root that forms the word hospice incorporates the notion of both host and guest. At these welcoming places where medical professionals and skilled volunteers help the terminally ill and their families cope with the pain and sorrow of the ending of the life, Cowan says, The patient cares for the caregivers, and the caregivers care for the patient.

It is a lovely notion, and one that has been part of Cowans personal life, volunteer activities and academic work with bereavement for decades. But while the idea of hospice is old (the word was used in the Middle Ages to describe welcoming waypoints for religious pilgrims), the practice of offering patients places where they can die with dignity, comfort and autonomy is relatively new. The first modern hospice opened in 1967, founded by the London-area doctor Dame Cicely Saunders. The movement quickly grew, with support from Saunders and fellow activists Florence Wald in Connecticut (who opened the first American hospice), Dr. Balfour Mont in Montreal and Dr. Elisabeth Kubler-Ross, author of On Death and Dying. There are now more than 3,000 Medicaire-approved hospices in the United States.

Documenting a movement
But as the movement grew, and its pioneers aged, no one had thoroughly recorded their stories and sensibilities. After a visit by Florence Wald to the Vermont Respite House, Cowan and her colleagues on the board of the VNAs Madison-Deane Initative for end-of-life care, were moved by her story and thought it would make the basis of a wonderful documentary. The 50-minute fruit of that effort, Pioneers of Hospice: Changing the Face of Dying, will premiere on Sept. 19 at 7 p.m. at the Burlington Sheraton Hotel. Pioneers Wald and Mount will speak at the event and participate in a panel discussion.

We were inspired, Cowan says, reflecting on the mood after Walds Vermont visit. We said we have to take action now, we have to capture these peoples stories in their own word and preserve it.

The collective decided to pursue the project, and secured Walds cooperation. She made the first entreaties to the other three early hospice leaders, who had all interacted with each other in the movements early days. Cowan and others eventually secured a $72,000 grant from the private JL Foundation, and began conducting extensive oral history interviews with the hospice pioneers, some of whom were in poor health. Documentary producer Terry Youk, a hospice volunteer and commercial video producer, and Camilla Rockwell, who worked with Civil War documentariain Ken Burns for 15 years, produced the documentary.

Its like this little engine that could, this little group in rural Vermont had a vision and belief and it was destined to come to fruition, Cowan says, explaining that the team began shooting even before they knew they had grant funding for the project.

Cowan is proud of the documentary that emerged. She says it allows the principals to tell the story in their own words, and gives viewers a sense of the deep spirituality (though not necessarily religiosity) that animated their effort to create spaces where people could die humanely. In addition to capturing the collaboration between hospice founders, the documentary also builds a larger sociological context for the movement, explaining how it grew out of the Civil Rights movement as an effort to provide people with terminal illnesses the right to have more say in their care.

The topic can be difficult In the 1970s death replaced sex as the most taboo topic in polite social conversation. Doctors couldnt understand the hospice movement because their whole training focused on curing, and death was seen as failure. but Cowan hopes viewers take away both the story of the hospice movement, and, perhaps, a new appreciation of the journey of death.

Florence Wald uses a term in the documentary, dying in good health. That is having a chance to take care of unfinished business, to die without pain. Each of these pioneers has devoted his or her career to that idea.

Now, says Cowan, as the idea of hospice is widely accepted, the concept is evolving to include palliative care, centers for treatment for life-threatening illnesses that would combine ongoing attempts to cure the condition with the caring function for families and individuals of traditional hospices.

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Pioneers of Hospice will premiere on Sept. 19 at 7 p.m. at the Burlington Sheraton Hotel. The free, public event will also include talks and panel discussions by Florence Wald and Dr. Balfour Mount. The two will also speak to medical students earlier in the day. Information: (802) 860-4499

Cowan and the documentary producers hope to get the video on public television, and will soon consult with television personality Bill Moyers on the best way to disseminate the piece. Additionally, a radio documentary producer for Minnesota Public Radios American RadioWorks traveled with the video team. The radio story will air late this year or early in 2004.

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