The Take Charge Partnership “Just Talk(s) About It:” A Model for Sustained Grassroots Activism
The Take Charge of Your Life Partnership began operation in 2000. Our earliest meetings were inspired by the community outreach designed by the Bill Moyers team to generate interest in the upcoming Public Broadcasting Services (PBS) television broadcast of On Our Own Terms: Moyers on Dying (Moyers, Moyers, O'Neill, Mannes, & Pellett, 2000). Our local Forbes Hospice was one of the national sites for a video conference that provided an opportunity to preview the broadcasts and encouraged community collaboration in planning associated activities. Maryanne Fello, the hospice director, invited individuals from a variety of backgrounds to attend. Some were entrepreneurs; others were palliative care physicians and nurses, hospice care providers and administrators, and area faith leaders. Two of us had no formal connection to health care practice but had cared for dying family members at home and had just published a book on the topic. A representative from our local PBS station, WQED, was also included. We might have dispersed after implementing activities related to the broadcast. But we didn't. Taking Moyers's call for community action to heart, we decided to meet again to plan a formal organizational structure. At that meeting, in addition to working on promoting the broadcast, we began to wrestle with crafting a mission statement, defining goals, and articulating a vision for future work. Although we have experienced a number of changes to our organization over the years, a guiding principle that has remained from the outset an integral and stated part of our mission is “to educate, support, and empower all people to deal with end-of-life issues.” While some aspects of the evolution of our organization are unique, we believe that our process is entirely replicable and hope that our narrative can encourage others to undertake such efforts. Key elements that characterize our effort are taking advantage of opportunities that came knocking; using constraints as opportunities; having a grounding in the individual, practical experiences of lay people; a focus on action; and forming and maintaining relationships with other like-minded, practical activists, including higher-profile champions.
In this chapter, we describe how we evolved into a project-oriented, activist organization working with local and state organizations to improve end-of-life (EOL) care. We focus on how, with funding from the Pennsylvania Department of Aging, we created Just Talk About It, a series of 1-minute online videos and study guides covering four subjects identified statewide as most important for the public to learn more and talk about: advance care planning (ACP)/choosing a health care agent; providing care for loved ones; considering hospice and palliative care; and managing pain. Take Charge has been described as “the little engine that could,” and we believe our work exemplifies what Margaret Mead meant when she said, “Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.”
When Cynthia Pearson and Margaret (Peggy) Stubbs found themselves at the first community meeting, their book, Parting Company—the Caregiver's Journey: Understanding the Loss of a Loved One (Pearson & Stubbs, 1999) had been on the market for about 6 months. It was 10 years in the making, which at times had been discouraging, but, in hindsight, the timing of the book's publication turned out to be very fortunate. Local publicity about the book resulted in invitations for them to talk about it with interested professional and lay audiences. Having spoken at Forbes Hospice, they were invited to attend the videoconference.
Moyers and colleagues' focus on death and dying gave voice to a change in attitudes that had been taking place in the broader culture about the EOL (Moyers et al., 2000). As chronicled by Ariés (1981), care for the dying and burial arrangements had once been an integral part of
family life, but over the years, advances in medical technology and funeral practices gradually resulted in the professional management of the EOL. The dying spent their last days in the hospital, not at home; funeral staff prepared the body for visitation at the funeral home, not the parlor at home, and also managed the actual burial. Family members became less involved and less familiar with the dying process and the direct care and associated tasks that might be required.
It was in this context that in the late 1980s, Cynthia and Peggy, friends since the fifth grade who had kept in close touch over the years, found themselves confronting a series of illnesses and deaths among family members and assuming the associated at-home caregiving responsibilities. Cynthia had managed her paralyzed father's care for 2 years before his death. Shortly after that, she lost a brother-in-law to an unexpected heart attack while she was also helping to care for a niece who was dying of brain cancer. Peggy's father had died of complications from surgery to remove an aneurism. Within the next 18 months, she lost her mother to inoperable kidney cancer, and within 3 weeks of that death, her brother, who suffered from mental illness and had been cared for at home by their parents, also died. As they compared notes during these ordeals, they acknowledged that they felt they were wholly unprepared to know what to do in these situations. What they did know was that they felt overwhelmed by the shock and sadness of witnessing the decline of their loved ones in the context of not knowing much at all about the dying process or how to assure that their loved ones got the best care.
At the same time, Cynthia and Peggy's direct involvement in their loved ones' dying was a function of another cultural shift that had begun in the late 1960s and 1970s. A backlash of sorts had formed against the medicalization of natural biological functioning (see Conrad, 1992, 2007). For example, natural childbirth was promoted as an alternative to what critics argued was overzealous medicalization of birthing practice (see Cahill, 2008; Fox & Warts, 1999; Oakley, 1980). Other critics saw the same trend in EOL care (see Hoyer, 1998). Interest in forgoing acute care to provide comfort care for the dying grew in the late 1960s after Dame Cicely Saunders introduced her hospice model of care in England. Eventually, in 1983, legislation in the United States permitted the reimbursement of hospice care under Medicare, in part as a response to the growing demand for less, not more medical intervention at the EOL (Hoyer, 1998). By the early 1990s, more and more people were expressing the wish to die at home, and more and more families wanted to honor that wish (SUPPORT Principal Investigators, 1995). But unlike their nineteenth century ancestors, these well-meaning family members, like Cynthia and Peggy, were not prepared for the tasks at hand.
Writing their book from their perspectives as lay caregivers, Cynthia and Peggy sought to describe the challenging details of caring for dying
loved ones at home, hoping to make this “new trend” of home death easier. As participants in the videoconference, they were members of the general public who wanted to honor their loved ones' wishes to die at home, but were hard pressed to know how to do it. At the same time, the palliative care and hospice providers who attended acknowledged a need to educate the general public about what their services actually entailed. People were confused about the meaning of palliative care and hospice. Many understood hospice only as a harbinger of certain death, giving up hope, and “doing nothing.” The entrepreneurs who attended were interested in creating and marketing products to help people make decisions of EOL care. All recognized a larger problem: how to engage the public in learning more about death and dying, a subject typically avoided in our death-phobic culture. It was an opportune time for coming together.