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Pioneers of Hospice: Changing the Face of Dying

Department of Psychology P.O. Box 311280 University of North Texas Denton, TX 76203-1280 hayslipb{at}unt.edu

Pioneers of Hospice: Changing the Face of Dying. Video/2004/49 min. Director: Terrence Youk. Producers: Camilla Rockwell, The Madison-Deane Initiative, and the Visiting Nurse Association of Chittenden & Grande Isle Counties, Vermont, USA, in association with Brook Hollow Productions. Distributed by Fanlight Productions, 4196 Washington St., Suite 2, Boston, MA 02131. 800-937-4113. Online: www.fanlight.com. E-mail: info{at}fanlight.com. Rental $60. Purchase (VHS and DVD) $199.

Pioneers of Hospice: Changing the Face of Dying provides us with a personal and heretofore unseen view of the history of the hospice movement by offering viewers an intensely moving portrayal of the feelings, goals, and frustrations of four key people whose work and force of personality have been absolutely essential to the establishment and growth of the hospice philosophy of care: Dame Cicely Saunders, Florence Wald, Elizabeth Kübler-Ross, and Balfour Mount. As each helped to define hospice as we know it today, Pioneers of Hospice: Changing the Face of Dying is as much about hospice principles as it is about these four unique professionals whose personalities have come to shape the face of end-of-life care. Through interviews with each, as well as carefully chosen video clips and photographs, we learn something very important that expresses the spirit of hospice: It is through our kindness to others, our willingness to listen, and our ability to communicate honestly and empathically that we change the quality of their living and dying. In turn, we grow both personally and professionally. Clearly, these qualities show through brightly in the portrayal of each pioneer here.

Each of these four in his or her own way expresses the essence of hospice principles: that dying is as natural as living, that dying is about both the patient and the family, that open, honest communication and pain control are each absolutely essential to effective hospice care, and that the care of the patient–family unit does not end when the patient dies. For Dr. Saunders, who founded St. Christopher's hospice in London in 1967, and who died in July 2005, we learn about her frustration with the quality of patient–doctor communication and her sensitivity to dying persons' need for honesty and empathy. For Dr. Wald—who in 1971 founded the first hospice in the United States, the Hospice of Greater New Haven, Connecticut—we see the importance of her collaboration with Dr. Saunders and her sense of the parallel between the Civil Rights Movement of the 1960s and 1970s and patients' rights. For Dr. Kübler-Ross, who died in August 2004 and whose 1969 groundbreaking book, On Death and Dying, revolutionized the public's perception of dying persons by humanizing the coping processes such persons employ in dealing with their mortality, we see that dying was transformed from something that was viewed as private to something that was public, worthy of open and honest discussion. Indeed, she emphatically states that dying persons are our best teachers and that we should listen to what they are telling us about living. For Dr. Mount, who founded the Royal Victoria Hospice of Montreal, we witness the transformation of a surgeon, who argues that physicians should "rediscover their hearts and not be afraid of their feelings." His recounting of his own experience of feeling alone and isolated from physicians when he had cancer is riveting. In this context, Dr. Colin Murray Parkes, a giant in the field of grief and bereavement, talks effectively of allowing dying persons to "feel safe enough (to talk) about the things they feel unsafe about."

What stands out in this video is the awareness and admiration that each person has for the other; their interconnectedness is emphasized throughout. This bond is evident in how each talks about Kübler Ross (whose interview excerpt in 2003 is presented), despite the fact that the video was made after her death in late 2004. Though it might have been emphasized a bit more throughout, the video makes effective use of music, and especially photographs and video of dying patients, and Saunders, Wald, and Mount talk of patients who impacted them in an intensely personal and meaningful way. This openness to intimacy, of course, is the essence of hospice—that we allow ourselves to touch and be touched by others. Equally moving are discussions of spirituality and what hospice means to each person: that openness with others is key (Saunders); that persons can indeed die in good health, in peace, and with a sense of life satisfaction (Wald); that one's spirit and consciousness live on after the physical body dies (Kübler Ross); and that healing reflects an emphasis on the here and now (Mount).

Pioneers of Hospice: Changing the Face of Dying teaches us that if we are complacent about a problem, that problem will go unsolved, and we will learn nothing about ourselves in the process. This video is intensely moving and emotionally provocative, and it should be seen by all health care professionals and students. It will add immensely not only to graduate and undergraduate courses in death and dying but also to community-based educational programs and hospice staff-training efforts. Indeed, it should be seen several times, as by listening carefully to what these unique individuals have to say about dying, we learn more about our own relationship to death from others whose courage and foresight were so very important in altering the quality of the care provided to dying patients and their families.

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