Annals of Long Term Care

To the Editor:

In honoring the memory of Dame Cicely Saunders (who would have been 92 years old this year), the founder of the modern hospice movement, it is fitting to focus on a core concept of palliative care, that of total pain, particularly spiritual pain. Although the biopsychosocial approach in medicine traces back to the 1950s, when George Engel, MD, who was later on the faculty of the University of Rochester School of Medicine, began to develop and refine that concept, it was Saunders who, in 1948, had added the spiritual domain of suffering to this mix, which she referred to as total pain. As Saunders recounted, “My story in this field goes right back to 1948 when I was a social worker… meeting a young Polish Jew who had an inoperable cancer...I became very fond of him.” (David Tasma had escaped the Warsaw ghetto and was dying in a London hospital. Tasma’s pain, loneliness, and anguish had a profound affect on Saunders. She visited Tasma frequently in the last 2 months of his life. As Saunders and Tasma spoke of his looming death, Saunders had a revelation.) “I realized that we needed not only better pain control but better overall care. People needed the space to be themselves. I coined the term total pain, from my understanding that dying people have physical, spiritual, psychological, and social pain that must be treated. I have been working on that ever since.”

In my view, three major documents have been critical in the development of palliative care in the United States. First, SUPPORT (the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments), funded by the Robert Wood Johnson Foundation, was printed in the Journal of the American Medical Association in November 1995 (www.ncbi.nlm.nih.gov/pubmed/7474243). That document was the first to give public view to palliative and end-of-life care, and it raised the issues about dying in America. Among other advances, it led to the Education on Palliative and End-of-Life Care (EPEC) and End-of-Life Nursing Education Consortium (ELNEC) training projects to train physicians and nurses in palliative and end of-life care and other programs as a part of the Project on Death in America, and gave early impetus to palliative medicine as a subspecialty.

Second, 12 years later, in October 2007, the Institute of Medicine reported about the need for providing psychosocial services to cancer patients and their families in Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs (http://bit.ly/au1lhA). The report led to increased attention to the psychosocial needs of patients with life-limiting illnesses and their families, using the context of cancer, but there was still a limited focus on spirituality in palliative and end-of-life care.

Third, in February 2009, a consensus conference on spirituality in palliative care was convened. The result of that conference was a report titled Improving the Quality of Spiritual Care as a Dimension of Palliative Care: The Report of the Consensus Conference, which was published in the Journal of Palliative Medicine as a special report in its October 2009 issue (www.ncbi.nlm.nih.gov/pubmed/19807235). That report made clear that spiritual care is a fundamental component of quality palliative care and that healthcare providers other than board-certified chaplains can provide spiritual assessments and interventions, and should be trained to do so as a part of transdisciplinary teams, leaving the board-certified chaplains to be brought in as spiritual experts.