Spiritual Care as a Fundamental Component of Quality Palliative Care Gets a Major Boost

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. 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.

The report of the Spiritual Consensus Conference marks the time where we now have clear-cut documents that support Saunders’ concept of total pain and the need for attention to the biological, psychological, social, and spiritual domains as critical and interdependent in the provision of quality palliative care services. I am a participant in the Advocating for Clinical Excellence Transdisciplinary Palliative Care Education (ACE) project, which is a palliative care educational experience funded by a major 5-year National Cancer Institute R25 Grant Award to the City of Hope Medical Center in Duarte, CA, for development and implementation of this program to enhance the advocacy, leadership, and support skills of competitively selected psycho-oncology professionals throughout the United States. As a part of the ACE program, each participant has to do a project that will help advance palliative care in his or her institution or community.

The project I chose is to further the ability of patients in palliative care and their families to receive quality spiritual care. The major part of that project is to train members of the clergy in palliative care. Although there are chaplains in institutions (most of whom have training in chaplaincy), the chaplains are limited to working with patients and families when the patient is in their institution (except in hospice where they may provide bereavement services after the death of the patient).

The largest need for palliative care–trained clergy is in the community. Community clergy working in congregations and parishes are the first line in providing spiritual care, as congregants and parishioners often seek assistance from their clergy in relation to spiritual concerns that arise in the context of end-of-life or serious illnesses or injuries that are life altering. These congregants and parishioners have indicated that they want to have their clergy come to the hospitals rather than have a chaplain they do not know, and who may not be from their faith group, to attend to them in the hospital. In this regard, as the elderly population dramatically increases, as more terminally ill patients are being cared for at home, and as the number of people with chronic (and at times debilitating) illnesses remain in the community rather than in hospitals, there will be an increasing demand for community clergy to provide spiritual care to these people and their families.

The second portion of this project is to facilitate, using a transdisciplinary model, the ability of physicians, nurses, social workers, psychologists, and clergy who work in palliative care, to perform spiritual assessments and provide interventions to address spiritual issues, concerns, and crises in the absence of board-certified chaplains trained in palliative care. To this end, I have updated an educational module, Spirituality in Palliative and End-of-Life Care, which I developed in 2003 when I first trained chaplains (some of who were also community clergy) in palliative care. When I created this module in 2003, it appeared that spiritual care was not talked about very much in working with the chronically or terminally ill persons, or with people who have suffered from traumatic injuries and disabilities, which was a surprise to me, because it was such a clear domain to be addressed in the treatment of such patients. The educational module in combination with other related materials, including Improving the Quality of Spiritual Care as a Dimension of Palliative Care: The Report of the Consensus Conference, constitute a spirituality curriculum that can be self-taught or used to teach others about spiritual care as a part of palliative and end-of-life care. This curriculum can be downloaded for free from the Growth House Website at www.growthhouse.org/spirit.

The third portion of this project is advocacy. It is imperative to seize the moment of the issuance of the consensus report on spiritual care as a critical domain of palliative care, along with the physical, psychological, and social domains. If the palliative care and faith/religious communities as a group do not seize upon this important moment in the history of palliative care to energize a nationwide movement to bring spiritual care services into the fabric of palliative care as coequal services, along with those services that address physical and psychosocial suffering, we may well miss out on the potential momentum that can be generated from this consensus report, thereby squandering the opportunity the report presents to bring spiritual care to its rightful, critically important place in palliative care’s core mission to treat total pain. Training clergy and healthcare professionals about spiritual care is the beginning of an effort to recognize the importance of spiritual care and to advocate for spiritual care services as an integral part of palliative (including end-of-life) care.

I hope that this letter helps your readers’ understanding of the development of palliative care, the concept of total pain (a core guiding principle of palliative care), and the recognition of the psychosocial and spiritual aspects of palliative care, regardless of venue. And I would hope that your readers will download the spiritual care curriculum and use it in their practices and in training others, thereby facilitating the provision of spiritual care to patients and their families as an integral part of palliative care.

Sincerely yours,

Hillel Bodek, MSW, LCSW-R, BCD
Board Certified Diplomate in Clinical Social Work Chairperson, Committee on Palliative and End of Life Care New York State Society for Clinical Social Work, Inc. Brooklyn, NY