PlainViews

Rev. Jeffrey Palmer on building a human connection

Doing Nothin’is Somethin’

“So, what do you do?”I envy people who can give one-sentence job descriptions. Making contact at social gatherings, sporting events or plane flights is easy if you can say, “I’m a woodcarver”or “I sell pet food to yak owners.”

It was humorist and commentator Art Buchwald who said, “The best things in life aren’t things.”My work involves doing “no–thing,”which might be confusing to people and make them suspicious that I’m doing nothing. It might sound weird, but I’ve spent twenty years in hospitals learning how to do nothing, or I should say, no–thing.

My job is not high profile. I don’t bring things to the bedside: no treatments, no pills, no invasive and unpleasant tests. I bring myself. That’s it; college, graduate school, a chaplain-residency and subsequent work experience . . . all for “no–thing.”

Life is a mysterious adventure with many variations, nuances and contradictions. I think it was John Lennon who said, “Life is what happens when you’re making other plans.”The chaplain’s role is to do “no–things”that may be big things. These “things”may be significant conversations and/or even sacred moments. Something subtle, yet powerful and life affirming may happen when a patient tells me the story of their illness. With the unburdening of the soul, with tears or laughter, there is an opening of the heart. If the tightly constricted spirit lets go of tension, there may be a decreased need for pain medication or a change in attitude.

Especially in the early phases of communicating with a patient or family member, I work at building a bridge, a human connection. People may be uncomfortable or guarded about talking with me. They may see me as the messenger of God-talk or “doom and gloom.”Or, they might not see a relationship between spiritual health and illness. And yet, people need to tell stories, because stories remind us of our common humanity. It is always important to affirm humanity in the midst of clinical situations. The world of medical technology may challenge our perceptions of balance, our fundamental harmony with nature, self, others and God. Bridge building is necessary because life, however we define it, is something we all share in common. We’re all in this together.

The Chaplain is a shaman in the experience of being lost and found. Shamans are mediators between worlds. In indigenous cultures, the shaman (or priest) brings powerful symbols to bear upon the ills of his or her tribe. One soulful description of disease is the experience of being lost in a dark forest. Author David Wagner prescribes, “Stand still. The trees and bushes beside you are not lost. Wherever you are is called HERE. And you must treat it as a powerful stranger, must ask permission to know it and be known. The forest breathes. Listen. It answers, ‘I have made this place around you.”’[1] Sometimes my role is to stand still with another until they can get their bearings again.

Compassion is being present to listen without judgment. It connects us to the Source, Power, or Holy One who put us here.

Teaching is also a useful metaphor for what I do. When there is a teachable experience in our lives, an “AH-HA”moment, we often say that this leads to transformation. Real change is difficult for us because we become so attached to our identities, expectations, habitual responses, and a particular attitude or outlook. For real change to occur, there has to be a shift at the center of our being, not just a rearrangement of “things.”This real change, or transformation, is an idea that religion calls awakening, enlightenment, or repentance. It involves a 180-degree turnaround. We start moving in an entirely new direction. With that in mind, and only at the patient’s invitation, I try to ask the right questions for the “Ah-ha”moment to happen. To borrow an image from singer/songwriter Neil Young, I’m a “miner for a heart of gold.”

[1] "Lost" by David Wagoner is included in the collection Good Poems, edited by Garrison Keillor, Viking Press, New York, NY, 2002, 219.

Jeffrey Palmer, M.Div., BCC, is Director of Pastoral Care at Glens Falls Hospital, Glens Falls, New York. He is Board Certified with the Association of Professional Chaplains and is endorsed as a Chaplain by the Presbyterian Church, USA. He is the State Advocacy Chair for New York. His interests include pastoral care administration, alternative therapies and mental health chaplaincy. His article originally appeared in a newsletter of the Hospital's Cancer Center.

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Editor’s note: This is a press release about a working meeting on chaplaincy in palliative care and World Hospice and Palliative Care Day, which is on October 7, 2006. They reached out to PlainViews to ask us to let other chaplains around the world know about this new endeavor in the Ukraine.

On the 4th of September, 2006, there was a meeting about chaplaincy in palliative care and the World Hospice and Palliative Care Day. This was the first such meeting ever held in the Ukraine.

It is known that about 500,000 persons die in the Ukraine each year. About 100,000 of them die from cancer. This sad statistic shows that these patients left the world mostly in enormous pain, because it is well known that oncologically ill people need adequate pain relief, which is not provided very often because of the specific Ukrainian laws.

According to the statistics, 5% of Ukrainians die in medical institutions, 85% at home, and 10% in other places. But places where they could meet death with dignity (hospices) in Ukraine are presently lacking.

Unfortunately, Ukraine also experiences the epidemic of HIV/AIDS. In numerous civilized countries, the network of hospices for those who die from AIDS was established a long time ago. In Ukraine, according to official reports, each year about 5,000 persons die with AIDS.

Incurably ill and dying patients need palliative/hospice care. So, numerous letters from the Ukrainian patients directed to the All-Ukrainian Council on Patients’Rights and Security encouraged the Council to start the project “Development of palliative care in Ukraine.”The Initiative found the understanding and support of the Ministry of Health, Ministry of Social Affairs and the “Renaissance”Foundation. A Task Force on palliative care was formed.

Developing palliative care, which is a form to assist incurably ill and dying people, needs the efforts of medical and social experts. One of the main principles of palliative care is to relieve the pain and other heavy manifestations of illness, and also integrate medical care with spiritual and psycho-sociological support. The spiritual issue is very important. Providing dignified end-of-life care is postulated in the world religions. Spiritual care is also needed for those who help sick people and everyday meet suffering, death and human weakness.

Understanding that, on the invitation of the All-Ukrainian Council of Patients’Rights and Security, at its meeting of 4th September 2006, the representatives of different churches and religious organizations responded. Participants in the meeting were: the Ukrainian Orthodox Church, the Ukrainian Orthodox Church (the Kyiv Patriarchate), Ukrainian Lutheran Church, Ukrainian Greek-Catholic Church, All-Ukrainian Union of the evangelical Christian Baptists, Roman-Catholic Church in Ukraine, German Evangelical-Lutheran Church.

It was decided to start this united preparation on the World Hospice and Palliative Care Day (7th October 2006). It is hoped that this will draw attention to the needs of the incurably ill and their relatives, and help the initiatives of medical personnel and social workers whose intent it is to help these people more.

We hope that the support of the mass media makes the event really interesting and unprecedented in Ukraine as well as in Europe.

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Whether you are an experienced caregiver or have recently started in a new caregiving situation, you know the pressures you face everyday to fulfill this difficult and demanding role. Considering some of these suggestions for coping with the stress of compassionate caregiving may help you and your fellow caregivers.

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Some time ago I got a call from an ICU nurse asking for a visit to a patient, who I’ll call Mrs. Jones, who was believed to be actively dying. When I asked about her faith tradition, the nurse said, “All I know is she says she’s ‘hanging on to Jesus.’”I grabbed my Bible and went to the ICU.

After checking in with her nurse, I went into her room. Mrs. Jones was a middle-aged woman, eyes closed, lying on her back, very still, her body horribly swollen from the IV fluids. I slipped my hand under hers and noticed there was no flexion in her wrist —when I lifted her hand slightly her whole swollen arm rose with it, as stiff as a tree trunk, and nearly as heavy. After a brief silent prayer for guidance I opened my Bible and read a few verses about “abide in me”from the Farewell Discourse of the Gospel of John.

Then I stopped and simply stood there, holding her hand, and after a few moments Mrs. Jones’s eyes opened and she smiled at me with her eyes. “I’m Chaplain Maxwell,”I said. “I understand you’re hanging on to Jesus. I hang on to Jesus too. That's why I came to be with you. Is that OK?”She gave me assent with her eyes. “Would you like me to pray?”I asked her. Again she assented, and I prayed. She closed her eyes during the prayer.

When the prayer was over, I stopped, and after a little time she reopened her eyes and again smiled at me. Then she opened her mouth –for the first time since I had come into her room –and began to sing. In a lovely, soft voice she sang a beautiful hymn to Jesus, one that I had never heard before but clearly a hymn, with a simple tune and words that rhymed. I was able to follow the tune and so hummed along with her as she sang. It was an amazing moment, this hymn rising out of her dying body, the two of us singing in the middle of the ICU with life-sustaining machines beeping in the background. Clearly she was getting in voice before joining the heavenly choir.

When she finished, I reminded her that (as her nurse had told me) she had family due in about 20 minutes, and asked her if she wanted to get a little sleep before they came. Once again she smiled, then closed her eyes, and fell asleep. I tiptoed out.

As do many other chaplains, I find song a helpful pastoral tool. After checking as to patient’s religious preference, I sing with demented people –familiar Christmas carols, even in August, can sometimes bring a moment of order to an Alzheimer patient’s chaotic world. And I occasionally sing to people who are dying after being extubated. Christmas carols seem appropriate to me for Christians here as well, since the patient is entering a new life in God.

But this is the first time in my experience a dying patient has initiated song. As I reflect on the encounter an image arises of a golden stream of light pouring through the window. Did it originate in the patient’s heart, or in the heart of God? Perhaps in that moment they were one and the same.

Do you have thoughts about spiritual development you’d like to share with your colleagues? Send an e-mail of any length to info@PlainViews.org.

EthicsWalk addresses spiritual care as an ethical enterprise. It explores why relationships between spiritual care providers and those they serve need protection, and examines what that protection entails. PlainViews invites our readers to share their responses to each EthicsWalk column, which will be published in the following issue.

If you’d like to respond to EthicsWalk, please send a comment of no more than 100 words. You can use the e-form below (click on "hearing from you," link) or submit your commentary to the editors in the body of an e-mail (or as a Microsoft Word attachment) sent to Info@PlainViews.org. Please put the phrase “EthicsWalk” in your subject line.

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At lunch recently, a chaplain mentioned that she’d just dropped a very thick envelop of highly personal medical information in the mail to an international research project on breast cancer. She was having second thoughts about her participation; not because of the extensive medical information, but because she “had to provide”her social security number (SSN) as a “participant I.D.”She’d read a New York Times article in which the Federal Trade Commission estimated that 10 million U.S. citizens a year have their identities stolen.[1] Medical records are a rich resource for pillaging SSN’s, the key component to identity theft.

The federal government issued SSN’s in 1936 to track citizens’benefits in Social Security programs. The Social Security Administration (SSA) assured Americans the numbers would have no further distribution or use. While the SSA largely kept that promise, other governmental agencies and private entities co-opted the SSN as the easiest form of identity coding. It is the most commonly used recordkeeping number in the United States.[2]

The Privacy Act of 1974[3] curtails some exploitation by government agencies if consumers exercise their rights.[4] It does not cover private entities although other laws addressing privacy often do.

People are unaware they need not comply with every SSN request. Indeed, it is socially and personally responsible not to comply with most! The breast cancer project used social security numbers for convenience. Requiring participant SSN’s was an unnecessary privacy intrusion with no medical research justification.

Awareness of individual and institutional rights and responsibilities regarding use and distribution of SSN’s is important to effective advocacy by chaplains for patients (and themselves).

Respect for personal privacy is a core ethical value. Recognizing and realizing opportunities to educate and advocate for privacy protection is socially responsible ministry.

[1] “Some ID Theft Is Not for Profit But to Get a Job,”The New York Times, September 4, 2006, p. A-12. Many stolen SSN’s are sold to undocumented immigrants to enable them to get employment. Employers don’t verify data and the SSA collects millions it never pays out to the undocumented workers who subsidize the system for U.S. citizens.
[2] See “My Social Security Number: How Secure Is It?”January 2006, Privacy Rights Clearinghouse, www.privacyrights.org
[3] 5 USC Sec.552a
[4] Federal, state and local entities requesting SSN’s must provide a “disclosure”statement on the form requesting the number. It must disclose how the SSN is used, by what authority it is sought, and state if providing the number is optional or mandatory (motor vehicle departments, tax authorities and welfare offices are among the few permitted to require SSN’s.).
[5] The Privacy Act of 1974 (5USC 552a) text at www.usdoj.gov/foia/privstat.htm
[6] If you are a patient in an institution that employs you, make certain your SSN is not “automatically”transported from your employment file to your medical record.
[7] CPE programs received federal funds in the form of student financial aid making them subject to FERPA in other areas of student life as well as SSN use.
[8] FERPA the “Buckley Amendment”of 1974 [20 USC 123g]
[9] If an institution argues the SSN is not part of the student record, Krebs v. Rutgers, 797F.Supp.1246 (D.N.J. 1992) rules to the contrary. SSN’s are properly required for financial aid and student employment but cannot be used for other purposes.

We post an ethical or situational concern that has arisen in a facility where one of our readers works. It has no identifiers included. It gives you only the facts of the case. Then, you can respond to that concern. This is an ongoing dialogue, with comments added as they come in. In the following issue, assuming it has been resolved, we give you the outcome from the facility where the incident took place. Please send any cases that you would like considered for inclusion to: info@plainviews.org

We hope that this new addition will help to inform not only those who are dealing with the issue, but will enable all of our readers to learn from the experiences and perhaps mistakes of others.

PLEASE NOTE: Due to unanticipated continuing responses to both the case and the resolution of the case, added responses can be viewed in the archives. Click HERE.

The chaplain made contact with the family and, aware of potential cultural issues associated with their background, suggested that she and the family talk in a private conference area. She explained the unit policies about communication and decision-making as belonging to the baby's mother, and asked mom if there was someone in the family she preferred to share decision-making with. When lively conversation ensued among the family members, the chaplain provided calm facilitation, which led to the decision that the maternal grandmother would be the co-decision maker and recipient of information.

The chaplain then explained the desire of the interdisciplinary team to honor and support religious beliefs and asked what the team needed to be aware of. Mom and the maternal grandmother explained their belief system, which was a combination of Pentecostal Christian and folk beliefs. The chaplain assisted in identifying the most important elements for the family and in explaining how they could be implemented and supported while staff's first priority needed to be the medical care of the baby. Parameters for family presence, interaction, and communication style were agreed upon, with the chaplain alerting the family that she would need to document the agreements for the staff in order to best meet the baby and family needs as well as the needs of all the patients and families in the NICU. Finally, the chaplain worked with the baby's nurse to arrange for all the family to come to the bedside for a brief chaplain-led prayer, emphasizing that this was a one-time-only event due to the baby's critical status.

The chaplain's interventions set the foundation for interaction with the family. The agreed upon parameters were documented, and staff was alerted to refer back to them in working with family members.The chaplain provided "on the spot" training to staff caring for the baby about the cultural background and belief system, including the cultural respect for religious leaders. When inevitable conflicts arose, the agreed upon parameters were followed and the chaplains were informed by the staff so that their presence would defuse the situation. Family requested that the chaplain provide daily prayer for the baby, who also maintained regular contact with the mom, grandmother, and other family.

A 16-year-old delivered a baby by caesarian section. The baby had cardiac anomalies which were discovered earlier in the pregnancy.

A large number of persons were present with her and the father of the baby at the hospital. The family identified themselves culturally as Gypsies.

After delivery, the baby was transported to the Nursery Intensive Care Unit. While numerous family members remained in the hallway outside the LD operating suite, several others went to the NICU demanding to see the baby.

Staff in both units attempted to explain the need for family to wait in the designated waiting areas, to lower their voices, and that medical information about the baby's condition could only be provided to the parents. Family members, including the patient's mother, became even more vocally upset in the units and connecting hallway. The nursing supervisor paged the chaplain to respond.

Does the fact that the family "members" identify themselves as Gypsies affect how you deal with them?

This audio collection offers anticipatory guidance to individuals facing a period of transition, the death of a loved one or death themselves.

The first CD blends the spoken word with music and the second CD includes meditative music without the verbal messages. My preference was for the second CD, a wonderful collection of short pieces ranging from chorales and a Benedictus to a meditation with gongs.

On the first CD, leaders from different faith traditions including Thich Nhat Hanh, Rabbi Zalman Schachter-Shalomi and Ram Dass, as well as experts on loss and transition such as Dr. Elisabeth Kubler-Ross, speak to themes of letting go, closure, giving and receiving love, forgiveness, appreciation of life and continuity of spirit. These themes, so familiar to chaplains, resonate throughout Graceful Passages.

Completed: 2000
Running Time: 147 Minutes for 2-CD set
Co-Producers: Michael Stillwater and Gary Malkin

If you are interested in purchasing this 2-CD set, you can do so at www.hartleyfoundation.org. Just click on “Masterworks”on the homepage for more information. The cost of the audio series is $27.95 for the book and 2-CD set.

Sarah Masters is the Managing Director of the Hartley Film Foundation, a non-profit foundation dedicated to cultivation, support, production and distribution of the best documentaries and audio meditations on world religions, spirituality, ethics and well-being.

Mending Bodies, Saving Souls: A History of Hospitals is a wonderful resource for healthcare chaplains. In order to understand the who and the where of professional chaplains in healthcare today and where we could be tomorrow, we need a clear picture of our historic positions within healthcare in the past. Risse’s book provides such a picture.

Beginning with the pre-Christian healing shrines dedicated to the Greek god Asclepius and ending with a patient-centered, interdisciplinary AIDS ward in San Francisco, Risse traces the historical developments of hospitals from “charitable guest houses to biomedical showcases.”(p. 4) Within this framework, Risse discusses the infirmaries in Benedictine Monasteries, the Crusader hospitals of St. John’s Hospitallers, the Medieval “lazarettos”(i.e., leper and plague houses), the rapid medicalization during the European Enlightenment, the surgical theaters of American hospitals, and the hospitals of today as houses of science and high technology. Beyond the wealth of historical information Risse provides is his use of first-hand narratives of hospitalized patients. Their testimonies, letters, and journal entries paint a human face on Risse’s history.

As a chaplain, I found Risse’s book most helpful in providing an historical overview of the various motivations behind the provision of healthcare, as hinted at by the book’s title. These motivations varied from one historical period to another, but for the most part involved the interplay of three major motivations: religious (i.e., God’s will is to care for the sick), social (i.e., sick people need to be isolated and cared for), and medical (i.e., we can cure sick people). In the Greek, Roman, Byzantine, and Middle Ages, the religious and social motivations were intertwined, but almost always defined in religious terms. During this period, conflict occasionally arose between what was considered religious/spiritual healing versus medical/secular healing. Toward the end of this period and into the Enlightenment period, the religious motivation was pushed out of the picture where possible and the medical motivation, supported by the social motivation, became primary. In the Modern and Post-Modern periods, all three motivations are generally present, but separated hierarchically into the medical or scientific, then the social, and finally the religious. In today’s world, a similar hierarchy exists, but social motivations and religious motivations (now defined as spiritual) are increasing in importance because such motivations have an impact on financial motivations, which, in today’s market, subsumes all other motivations, including medical/scientific ones.

I strongly recommend this book for personal study and also think it would make a great study for a hospital-based book club.

Risse, Guenter B. Mending Bodies, Saving Souls: A History of Hospitals (New York: Oxford Univ. Press, 1999), pp 716.

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