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End of Life Care: Clergy and Physician Partnership
By Betty J. Letzig, GAA Volunteer
Washington D.C., March 4, 2004
Integrating spirituality into medical care - including the End-of-Life - was the theme of a conference sponsored by the Gwish1
in Washington, DC, on March 4, 2004. Conference sponsors were: the E.Rhondes and Leona B.Carpenter Foundation, Supportive Care of the Dying, Vitas Hospice Foundation and the Kassie Billingsley Foundation. Dr. Christina M. Puchalski, Director of Gwish, is a leading crusader in this area and chaired the Conference that brought together religious leaders and seminary deans from many denominations and faiths.
In 2000, a Gallup survey of 1200 persons, 18 and older, found that the majority of Americans rated "Spiritual Comfort" as their top concern in the event of their facing death - yet only 33% of respondents said they would turn to clergy, and slightly smaller percentage (30%), to their physician to have their spiritual needs met.
Acting on this data, Gwish, surveyed all theological schools that are members of the American Theological Union. The majority of the schools responded that they had minimal material on end-of-life courses in their curriculum and that more could be added. They also acknowledged the importance of having future clergy learn how to work within the healthcare system to have more impact on patients' care.
Gwish moved immediately to develop courses on spirituality and health for medical schools and residencies, and today nearly 100 of the 125 medical schools have such courses. Students learn how to take a spiritual history of patients and how to work with chaplains and clergy.
Building upon a smaller conference with clergy held in 1999, the "End-of-Life Care: Clergy and Physician Partnership" Conference addressed some of the issues raised in earlier conferences, "particularly with regard to theological and pastoral perspectives on end-of-life care, enhancing training, and forming recommendations for policy by religious organizations on a national level."2
Learning to think of death differently was an underlying premise in the presentations. Paraphrasing words of Joseph Cardinal Bernardin of Chicago used in the Opening Ritual: "Death seen as an enemy causes anxiety and fear, and persons tend to go into a state of denial. Seen as a friend, death becomes a transition from this earthly life to life eternal." Presenters spoke of dying as a "part of living," "a continuum-growing up, growing old, growing on," "a time of full and health living," and "a gift - time to prepare." Not as a "good death" but as "dying well."
All life ends in death, yet no one has experienced death. What both physicians and clergy regularly do experience is the suffering of persons in the midst of terminal illness. What must be recognized is that "suffering" is more than physical pain, which does require expert attention; and, that the awareness of the individual that he/she is in a final transition of dying dwarfs the medical problems by the enormity and depth of that realization - and requires equivalent care.
From their different perspectives clergy and physicians need to learn to collaborate and undergird one anther for the best interest of the patient. In Dr. Puchalski's worlds: "spirituality is a key dimension for achieving optimal health and for coping with illness. a Doctor has a responsibility to understand a patient's belief system, whatever it is, not only as a way of strengthening the doctor-patient relationship but also as a tool in bringing the mind to the aid of the body."3 One approach to this understanding is the taking of a spiritual history through the use of the FICA: Spiritual Assessment." Questions are asked relative to:
F -Faith, Belief, Meaning
I -Importance and Influence
C -Community
A -Address/Action4
Keynote speaker, Dr. Ira Byock, Director, The Palliative Care Center, spoke on the ethics and practice of End-of-Life Care, drawing on learnings from hospice and palliative care practices. In his message, "The Nature of Suffering and the Opportunity at the End of Life," he described the opportunities as, "communication, resolution, completion, grieving, exploration of the meaning and purpose of life and the exploration of the transcendent." A key question to be asked of patients is "What might be left undone if you were to die today?"
Dr. Byock offered a working set of "Developmental Landmarks and Taskwork for the End of Life" (see below) that are "intended to represent predictable personal challenges as well as important opportunities of persons as they die." In conclusion, he stated "Dying well. . .can be understood in terms of the subjective experience of personal growth, embodying a sense of renewal (at times enhanced), meaning and a sense of completion, at times even fulfillment in life. . .The touchstone of dying well - the sense of growing in the midst of dying - is for the experience to be important, valuable and meaningful for the persons and his or her family. . . .The role of the clinical team is to stand by the patient, steadfastly providing meticulous physical care and psychological support, while people strive to discover their own answers."
The first panel dealt with: "End of Life Care: Theological Implication for Seminary training." Students, to be effective, must have a sound theological understanding of death and dying: be adequately prepared through praxis to minister to the patient, family/friends, and the professional community. Commitment to public policy advocacy in behalf of the patient's needs and desires is also required. Seminarians must be helped to break the silence regarding death and talk as a "faith community" about the ethical issues, including the technical developments that prolong the dying process and the emphasis on "pro-life," i.e., life at any price. They also must be prepared to collaborate with the medical community to change laws to achieve their common goal of the best interest of their patient.
Seminaries must also be prepared to train their religious community to deal with end-of-life issues as they affect the entire family, especially in light of the changing demographics of the country as the "greying of America" accelerates.
The second panel focused on the pastoral application of caring for the dying. The role of the clergy, according to Dr. Ramonia L.
Lee5, is as "Agents of Grace," counselor, educator, advocate, reconciler, healthier, sacred representative: encourager/friend, spiritual guide; ethicist, celebrant and preside. Muslim, Jewish, and Christian clergy presented multiple faith perspectives.
The third and final panel presented model programs describing churches and temples that work closely with the medical team to give "holistic care for whole persons for whole care." In distinguishing the differences between the tasks of hospital chaplains and clergy, the chaplains' role was defined as tending to the spiritual needs of the entire health community vs. the role of clergy which is to represent her/his particular faith community /congregation to the patient.
Dr. Robert Zalenski6 stated that, "Hospitalization is often a desert experience for the patient and clergy are water in the desert for them." The patient needs both clergy and physicians.
Interfaith seminars involving 400 congregations helping local pastors learn to deal with end-of-life issues offered some models. Also, a clergy/physicians' conferences operating with a "4 A " framework demonstrated useful cooperation.
A - arrangement - monthly meetings at 7 am at the hospital for 90 minutes
A - affirmation of each other's calling
A - assumptions - both groups are equal partners of the health care team
A - adjustments - all are on a journey
Other models described ways in which local congregations team with the health community to provide care within the community; others detailed the role of members of the congregations/faith communities in supporting their own members/constituents.
The closing ritual ended with a prayer for "the blessings of continuing communication, collaboration and quality of care for those at the end of life."
Betty J. Letzig
6/1/04
Ira Byock, MD
Footnotes:
1 The George Washington Institute for Spirituality and Health
2 Letter of Invitation from Dr. Christina M. Puchalski, 1/13/04
3 The Washington Post, August 7, 2001
4 FICA: Spiritual Assessment. Copyright, Christina M. Puchalski, MD, 1996
5 Minister of Congregational Life, The Inter-Faith Chapel, Silver Springs, MD
6 Professor of Emergency Medicine and Palliative Care, Wayne State University School of Medicine
A Working Set of. Developmental Landmarks for the End of Life
Introduction
A developmental framework occupies the center for much of my work and many of my writings. The concept of personhood and a model of life-long human development can be applied to understand the nature of suffering, as well as to comprehend experiences of enhanced well-being occasionally reported by dying patients.
Although symptom management is the first priority for palliative care, it is not the ultimate goal. True person and family-centered care strives not only to ensure comfort, but also to improve quality of life and preserve opportunities for people who are dying and for their families to grow through times of illness, care giving and grief.
The specific characteristics of personal experience with advanced illness, dying and grieving vary widely from person to person. The conceptual framework and the language of life-long development effectively encompasses the broad range of human phenomenology related to these experiences - from severe suffering on the one hand, to a sense of profound well-being on the other.
Building from a foundation of human development within child psychology, education and pediatrics, I have worked to extend and apply life-long human development as a theoretical basis for the studying of end-of-life experience and shaping clinical care.
The specific work that a person has need for, or interest in, doing as they confront life's end will vary. A person's individuality is not diminished by recognition of elemental commonalities within the human condition as life ends. Issues of life completion and life closure are available to each individual - and one need not await serious, life-limiting illness for these issues to have relevance.
The end-of-life developmental landmarks and the taskwork that subserve them are intended to represent predictable personal challenges as well as important opportunities of persons as they die. I have provided the "working set" of developmental landmarks and taskwork below as an example of how this construct can be applied.
This "working set" of developmental landmarks and tasks evolved from notes that I kept in trying to make sense of clinical challenges in a way that would inform caring interventions. The actual landmarks and taskwork delineated invite refinement and modification. The general developmental approach can provide a valuable map to clinicians through the treacherous landscape of the dying experience and end-of-life care.
Importantly, within this model one need not sanitize nor glorify the experience of life's end to think of a person as having died well or, similarly, as having achieved a degree of wellness in their dying. Personal development is rarely easy. The touchstone of dying well - the sense of growing individually or together in the midst of dying - is that the experience is of value and meaningful for the person and their family.
A Working Set of. Developmental Landmarks for the End of Life
Landmarks Taskwork
|
Landmarks |
Taskwork |
|
Sense of completion with worldly affairs |
Transfer of fiscal, legal and formal social
responsibilities |
|
Sense of completion in relationships with
community |
Closure of multiple social relationships
(employment, commerce, organizational, congregational)
Components include: expressions of regret,
expressions of forgiveness, acceptance of gratitude and appreciation
Leave taking; the saying of goodbye |
|
Sense of meaning about one's individual life |
Life review
The telling of "one's stories"
Transmission of knowledge and wisdom |
|
Experienced love of self |
Self-acknowledgement
Self-forgiveness |
|
Experienced love of others |
Acceptance of worthiness |
|
Sense of completion in relationships with family
and friends |
Reconciliation, fullness of communication and
closure in each of one's important relationships.
Component tasks include: expressions of regret,
expressions of forgiveness and acceptance, expressions of gratitude
and appreciation, acceptance of gratitude and appreciation,
expressions of affection
Leave-taking; the saying of goodbye |
|
Acceptance of the finality of life - of one's
existence as an individual |
Acknowledgement of the totality of personal loss
represented by one's dying and experience of personal pain of
existential loss
Expression of the death of personal tragedy that
dying represents
Decathexis (emotional withdrawal) from worldly
affairs and cathexis (emotional connection) with an enduring construct
Acceptance of dependency |
|
Sense of new self (personhood) beyond personal
loss |
Developing self-awareness in the present |
|
Sense of meaning about life in general |
Achieving a sense of awe
Recognition of a transcendent realm
Developing/achieving a sense of comfort with
chaos |
|
Surrender to the transcendent, to the unknown
"letting go" |
In pursuit of this landmark, the doer and the
"taskwork" are one. Here, little remains of the ego except the
volition to surrender |
Reference:
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Byock I., The
Nature of Suffering and the Nature of Opportunity at the End of Life
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Clinics of Geriatric Medicine, Vol. 12, No.2, pp 237-251, May 1996
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