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. 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:
- listen, elicit, identify and respond to individual religious needs
- complete the spiritual assessment
- 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.