CONCLUSION: WHERE DO WE GO FROM HERE?

We have made huge cultural changes before. A generation ago, Americans transformed birth. That didn't happen because doctors urged women out of stirrups; hospitals didn't put out the welcome mat for dads and their video cameras. No institution promoted soft lights and doulas. Instead women recognized that there was a better way and insisted on changing their own experience. Today we're recognizing how badly we are “doing death” and that we must change our experience with it, too.

Ellen Goodman, 2012, pp. 58–59
The power to change how we plan for death is in our hands. Clearly, legal or bureaucratic mandates such as the PSDA or health care provider-driven initiatives have not been enough to cause the cultural shift that brings conversations about death, dying, loss, and care to the kitchen table, as Pulitzer Prize-winning columnist Ellen Goodman called for as she launched her retirement mission, The Conversation Project (theconversation project.org/). The Conversation Project, with the collaboration of the Institute for Healthcare Improvement, is one of the groups in the country leading the effort to transform our culture around issues of EOL. Leaders in the medical professions, such as Dr. Ira Byock, author, past president of the American Academy of Hospice and Palliative Medicine, and advisor to the Conversation Project, place the focus of this transformation project in the hands of the community. Byock states:

The medicalization of aging, dying, and grief ignores the innate, healthy human drive to care for one another. It erodes core cultural roles and suppresses latent caregiving skills that reside within families and communities. Even in a person's dying— especially in a person's dying—family and community comprise the proper context for a person's life. (Byock, 2012, p. 150)

Physicians, nurses, social workers, psychologists, and other professionals (such as those who have contributed their expertise in this volume) can share their wisdom on best practices for how we can better communicate about death and dying. Their voices are essential in helping us know how best to meet the needs of a variety of people as they face with their families the challenging passage from life to death. But as it took a grassroots movement of ordinary people working in their communities to realize the cultural and structural changes that resulted from the civil rights movement, the women's movement, the gay rights movement, and other social movements of the 20th century, so too will it take a community organizing and social movements orientation to fully realize the aims of a new way to deal with dying. The challenge is ours to take.

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