GWish Conference March 2004

End of Life Care: Clergy and Physician Partnerships Conference

An excellent conference, End of Life Care: Clergy and Physician Partnerships, was recently held at the Wesley Theological Seminary in Washington DC. Sponsored by George Washington Institute for Spirituality and Health, (GWish), and with Ira Byock, MD as keynote speaker, the conference brought together about 150 people,  mostly clergy, chaplains and directors of spiritual programs for the elderly. The conference came about as a result of a survey sent out by GWish to theological schools which indicated that there were minimal end-of-life courses being taught as well as a need for more healthcare training so that future clergy could work within the system to have a greater impact on patient care.

GWish

Gwish was established in May 2001 with a grant from the John Templeton Foundation. It promotes programs that create a role for spiritual and religious concerns in medical school courses, residency programs and continuing education for physicians. It puts out a newsletter and has a website: http://www.gwish.org

The organization also sponsors and co-sponsors conferences and has a mini-fellowship program for those interested in doing research or education projects. The driving force behind GWish is Dr. Christina Puchalski  who has been working for years to increase the influence of spirituality in end of life care. She started programs at George Washington Univ. Med School, worked for the Center to Improve care of the Dying, and developed the FICA questionnaire(link) which has been taught to and used by thousands of physicians world wide.

Her work follows in the tradition of Benson, Kushner, Koenig, Kubler-Ross and many others. It holds that the mind and spirit are vital components of wellness and that development and growth can occur through the moment of death. Dr. Puchalski has written many articles and is very active as a speaker. I refer you to the GWish site for more information about her.

The program started with an invocation where Father Joe Driscoll reminded us of our duty not only to be gaining knowledge but also practicing awareness while attending a conference such as this. He introduced the reflection question of  “How is it possible for death to be a friend.” He opened this question for us to examine in how it could transform the dying process.

Editor’s note: In no case was euthanasia being referred to here or in any other part of the conference. The hospice and palliative care movements generally  do not support physician assisted suicide because the natural dying process may afford a time of growth, forgiveness and realization.

For her opening remarks Dr. Puchalski  thanked the sponsors of the conference and described how this conference came to be and the reasons behind it.Briefly stated, the revolution in health care has slowed the process of dying. People can “live with dying” for several years and, as more and more studies have shown, there is a spiritual component which holds much importance in terms of determining quality of life. Spiritual here refers to “that which allows a person to experience a transcendent meaning in life.” Physicians historically have either ignored or don’t know about patients’spiritual needs, and clergy have not properly served them. Patients turn elsewhere, don’t find fulfillment or find despair. Hence a growing need to educate physicians and clergy about the spiritual side of end of life care.

Keynote address: Ira Byock, The Four Things that Matter Most

Dr. Ira Byock has done pioneering work for many  years in the ethics and practice of end of life care. He created the Missoula Project, published two books, Dying Well and The Four Things that Matter Most, and has written numerous articles about compassionate care for the dying. Dr. Byock, a self described “serious student of the subject of death and dying,” spoke to the conference about the nature of suffering and the developmental model for the end of life. See his website at http://www.dyingwell.org

Culturally we have relegated end of life care to the medical field but this is not functional because it turns death in to a “problem.”

Dying is more than a set of problems to be solved. It is a vitally important personal experience. If extraordinary medical measures are used with the emphasis on bodily survival it is often not to the patient’s benefit.  If interventions such as palliative care are used the patient has energy and attention to address the fundamental issues.

Spiritual issues are of two types: response to mystery and connection to an enduring construct. These definitions throw the nature of suffering into question. This was detailed by Cassell in NEJM 306:11 1982. Some people experience heightened quality of life with dying and suffering. Most Quality of Life indexes (questionnaires that are used to measure a patient’s satisfaction at any time during their illness) ignore this and are, therefore, inaccurate. One who is addressing  physical, family or psycho social issues would also be well to ask “And how are you within yourself?”

Dr. Byock  went on to describe the last year of Bill Barthalme’s life. Bill characterized his fatal disease as a gift. He had months to live in the light of death and this gave him an appreciation of the small things, the details and simple beauty of life.

All options are available until death. The adage, “people die as they have lived” is a half truth that can lead to nihilism. It is important for clinicians and community not to pre-judge, to “just show up,” be with the patient, and do the practical tasks with an undemanding attitude. A person who has led a very closed life will often open up and forgive in his/her last days. A lot can be accomplished in this short time.

Dying is a transition, an adjustment to a new set of life constraints and circumstances. Things that used to work no longer do…expectations are different, and this happens throughout life at times that we can all think of and remember, i.e. the first day of kindergarten…all of a sudden strategies have to change for dealing with life. People will adapt. They are infinitely larger than what we see and there is always opportunity for growth and development. A prolonged period of dying can be better than sudden death because this valuable time allows one to explore spiritual domains and heal relationships – the developmental tasks associated with dying.

It is time that we started to think developmentally about the time of death. Loosely viewed in serial order the tasks associated with development while dying might look something like this:

1. 1. Take care of practical business
   2. Resolve relationships in community
   3. Life Review, tell life stories (not psychotherapy) biographies of joy which become as heirlooms
   4. Develop sense of self-love, self acknowledgment and self forgiveness
   5. Experience love of others, acceptance of worthiness. The mantra of “I am not a bad person” changes to the mantra of “I am a good person.”
   6. The four things that matter most:  Please forgive me. I forgive you. Thank you. I love you.
   7. Acceptance of the finality of life, acceptance of dependence. Here the patient’s role is to let the family take care of him, it is important that the family get to play that role.
   8. Sense of a new self – mystery. Spirituality as distinct from religion. Can help define this with the question: Is there anything or anyone worth dying for?
   9. Surrender to the transcendent, letting go. People become less corporeal,  more ethereal.

Dr. Byock finished his talk with the reflection that “How we treat people in physical and moral decline will be the central question of our generation, what we are judged for.”

A question and answer session then took place. Dr. Byock emphasized that one should keep a sense of flexibility and lightness in helping those, or the families of those, who are troubled at the time of death. Draw them lightly into a discussion or a reflection about their past and about what would be the real desire of the one who is passing…get away from the unimportant issues to the real issues addressed above, the four things that matter most.

Panel Discussion: Theological Implications for Seminary Training

For the next part of the program, 5 theologians first presented individually and then answered questions as a group about the issue of whether seminarians are getting as much  training as they should  in end of life issues. Here many  topics were addressed;  whether seminarians are getting training that is practical, the role of women in ministering to the dying, the importance of community and communication at the end of life, the necessity of the practice of preparation for death by clergy on a daily basis, and the views of each of the 4 represented religions of  healing as a whole mind/body/ spirit phenomena.

An interesting point was raised as questions were being answered about the nature of faith and the role of clergy in relation to another’s faith or faithlessness. One of the panelists described how when she had cardiac surgery she was feeling very depressed about the slowness of the recovery and was made even more depressed by the thought that she might be losing her faith. She just didn’t have the energy to have hope. Her Rabbi approached her and asked what was wrong. In response to her dilemma he told her that she could let it go of her faith for a while and give it to him. He would hold her faith for her until she felt stronger and ready to take it back. This was an especially powerful image with wide ranging implications. It summed up the best of what was a very stimulating  panel discussion.

Panel Discussion: Pastoral Ramifications

The next panel focused on practical programs from 6 different parishes each of a different tradition. The overwhelming sense here was of the importance of community; volunteers, parishioners and lay persons of all ages working together in the community and  providing practical support to those who are sick or dying. Presence is of the utmost importance, either physical help in running errands, writing cards, or providing meals. Simply putting food in the home is an opportunity to be present.

The pastor’s role as a reconciler and healer, one who can help restore wholeness to the spirit of the one who is dying and embrace the assurance that they have not been abandoned, the importance of touch and a non-anxious presence were then discussed. Poems, symbols and rituals are what people need at the end of their lives, not tubes and pills.

Panel Discussion: Collaborative  Partnerships

The final panel discussion was chaired by Father Joe Driscoll who started by clarifying the differences between clergy and chaplaincy.

Chaplains respond to the spiritual needs of a person whatever they may be. Clergy represent faith based communities. Chaplains are board certified and knowledgeable of the health care environment and terminology. Clergy are responsible to his/her own congregants.

The first panelist who took the podium was Laurel Burton, ThD. He saw the need for increased end of life care training/physician-clergy collaboration very early in his career when his father was ill in the intensive care unit of a major hospital. His father was a clergyman so during visiting hours there was an almost continuous parade of his clergy friends. What our speaker noticed to his disbelief was the unanimous denial of the severity of his father’s condition on the part of the visitors and their obvious discomfort. in the face of his illness. Not one of his friends addressed his father’s critical condition, took a moment of silence with him, prayed quietly or in any way acknowledged his closeness to death.

Dr. Burton outlined objectives for seminary programs which should train clergy to:

1. 1. • listen, elicit, identify and respond to individual religious needs
   2. • complete the spiritual assessment
   3. • clarify ethical issues and articulate an effective spiritual care plan.

Chaplains should be able to work co-operatively with health care personnel and provide bereavement support to families. They should be sensitive to cultural contexts. The three C’s of chaplaincy are: competence, commitment, and confidence. This will allow them to have a strong presence which in itself will help others.

Pastoral Healing Communities were then discussed as they are being implemented on Long Island. In the Catholic model, parishes are being established around health care facilities so that healing communities are created that can provide a continuum of care for those coming out of hospitals or nursing homes and also for those in the facilities.

In the final presentation of this panel, Robert Zalenski, MD described his view of the hospital environment as a desert with the chaplaincy as water. Palliative care consult teams are a new gathering of disciplines of which chaplains are a part. It is important to remember that in a hospital environment any one person can hold the key to the patients heart.