PlainViews

As consciousness dawns on me, the sound of rushing water heightens my senses. In the Valley of a Thousand Falls, morning quietly descends through the mist over the Robson River as the sunrise blesses the mountain peaks high above the valley. Our team of eight colleagues had hiked 10.5 kms the evening before and we were now stirring in our tents, intrigued by the surroundings that had been cloaked in darkness when we arrived.

For months we had talked about this backcountry hike to Berg Lake, 20 kms behind Mount Robson. Yes, we all knew each other as colleagues in Supportive Care Services at the Royal Alexandra Hospital, but how would hiking together go? Would we share a similar pace? How would the weight be distributed and could we hold in common a respect for the majesty of the backcountry? Only one of us had ever hiked into the backcountry. The rest were traveling on faith.

Over this past year we have been reflecting on our experiences of team: what is it that draws us together in such a powerful way? One of the Pastoral Care & Counseling staff noted, “You were all talking about this trip, so excited and filled with energy, and didn’t stop talking about it for months after you were back.”

With our packs on we begin the ascent up the trail, climbing 500 metres in 5 kms. Some push on ahead to find a good campsite for the group. Others encourage each other up the relentless switchbacks. If not literally, then spiritually we carry each other’s burdens. Up past three thundering cataracts, and across the plain we work our way till we come to our place of rest on the shores of Berg Lake. With tents set up and supper cooked, we gather on the porch of the cook cabin, sipping tea and sharing stories. How can one put into words the feelings shared among the team? Nothing can express the beauty around us, but all of us feel the deep energy of Creation. Creator's presence feels particularly close.

Some would like to take their time on the long hike home. They choose to walk back part way the next morning. Another wants time alone at Toboggan Falls for rest and prayer. Four choose the 20 km round trip up to Snowbird Pass. Being a team is about finding a balance between being together and following one’s own heart. We all understand this, even without discussing it. Each is comfortable to walk with each.

Months later, the entire team is busy, the bustle and banter is enlivening. It is our 7th Annual “Beat the Blues”pancake breakfast, and the first of over 800 staff members of the hospital who will take part in this event begin to line up for pancakes, sausages and coffee. Some of our team flip pancakes, others pour juice. Music from a guitar, from voices and from the piano feed the soul. Teasing, prodding, encouraging and sharing in the common endeavours the team feels a spirit –a coming together –something that transcends and enlivens. At the end of the morning we all feel a sense of accomplishment, but more so a communion that joins us together. Is this what we mean when we talk about the Spirit of God moving among us?

What does it mean to be a team? Is it sharing common work experiences? I'm not sure how to describe what happens, what we feel. All I know is the on the shores of that lake far in the backcountry, with the breeze whispering in the fir trees and in the heat and bustle of serving up pancakes in the heart of a busy tertiary hospital - there is a Spirit alive among us. Thanks be to the Source of Life!

Submitted by Neil Elford, on behalf of the Supportive Care Services Team at the Royal Alexandra Hospital, Edmonton.

Rev. Dr. Neil Elford is the Manager of Supportive Care Services at the Royal Alexandra Hospital, Capital Health. There, along with his administrative duties for Pastoral Care and Counseling, Multicultural Services, Clinical Ethics, and Volunteers, he exercises his ministry through clinical education, pastoral psychotherapy and counseling, and pastoral care ministry to patients and their families. He also provides leadership across the Capital Health region in the development of culturally sensitive health care programs for Aboriginal people. Rev. Elford serves on the Doctor of Ministry Program Committee and is an Adjunct Faculty member at St. Stephens College, Edmonton. He received a Bachelor of Arts degree in Psychology at the University of Waterloo, a Master of Divinity degree at Queen's University and a Doctor of Ministry degree from St. Stephen's College at the University of Alberta. He holds ordination within the United Church of Canada. He is certified as a Teaching Supervisor in both Clinical Pastoral Education and Pastoral Counselling Education by the Canadian Association for Pastoral Practice & Education. With his family, Neil enjoys skiing, backcountry camping and gardening.

Do you have thoughts about professional practice you’d like to share with your colleagues? Send an e-mail info@PlainViews.org.

In her recent article, my colleague, Jane Mather, has clearly and cogently raised a very important concern and presented a clear set of questions and challenges. This issue is particularly important because we, as religious professionals, are often in denial about it and disregard it at our own peril.

Before I propose my answer, I would enter a plea for a change in terminology. It is my hope that I, and others in pastoral care, don’t make judgments. We should have opinions, insights, perspectives, action plans or even hypotheses, but not judgments.

On the question, I am of the group that believes that the issue is in “what use is made of what is heard.”We always gather information, discern, assess and come to conclusions. We cannot and should not try to turn that function off. It is the way we are hard-wired to live in the world. It is the process I use to decide whether to hit the brake or the gas pedal in the car. It’s the way I decide how to respond to someone I’m in conversation with in any context. As a chaplain, I simply have developed, through training and experience, some very specialized ways to use this basic ability. I cannot do anything about that at this point. I do not leave it on the train going home and pick it up in the morning. It is always with me. It is a permanent part of who I am.

Further, those around me don’t expect or want me to turn it off. When my friend and neighbor was trying to make medical decisions for her dying mother, she stopped me on the street and asked for my opinion. We both understood that I was not her priest. I continued to be a friend, but one who has some ability to assess and give insights on her situation that might be helpful. When my father was dying, my siblings expected me to take the lead in dealing with the medical professionals.

The question is not do we turn it off. I would argue that we cannot even if we try. The question is what is appropriate to do with the information in different contexts. When I am driving, I am obliged to act on my assessment of whether the gas or the brake is the appropriate pedal at the moment. If I am in the car but not driving, I still often make the assessment. The problem comes if I choose to share that assessment with the driver in a way they don’t need or appreciate. Further, the rules were different when I was teaching my sons to drive. How I make these decisions are, in themselves, processes of listening, assessing, and concluding.

I believe these are questions we need to struggle with in virtually every interaction we enter into. Thanks to Chaplain Mather for her assistance in keeping these questions in front of us.

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

I serve as staff chaplain for a children’s hospital where we provide services for pediatric patients up to age eighteen who have experienced brain injury and spinal cord injury. Our care of pediatric patients also includes care of their families. About a year ago, the social worker, Michelle Holmvik, and I set out to change how we conduct family care conferences on our acute pediatric rehabilitation unit.

One of the strengths of our program is the practice of holding regularly scheduled care conferences (every two weeks) with families and with patients, as appropriate. However, our regular care conferences had become little more than reporting sessions, during which physicians, nurses and therapists took turns reporting progress made, goals accomplished and what equipment families would need for discharge planning. Our process of reporting to the family encouraged them to remain silent and passive in care conferences.

As part of the interdisciplinary rehab team, the social worker and I are concerned with the emotional and spiritual health of families as they struggle to adjust to the losses and changes that any serious injury or illness brings. Parents appear to cycle through periods of belief and disbelief in the profound changes that accompany injury or illness in their child and in their family.

We are especially mindful of families whose children are not making significant progress. We notice that when outcomes are uncertain or when progress is less than expected or hoped for, parents struggle to make the necessary preparations for their child to return to the family home.

Some parents experience decreased capacity for decision-making, creating delayed discharges to the home. Parents can be afraid and ashamed to voice concerns about whether or not they will be able to care for their child in the family home, considering the level of care some of our patients need upon leaving acute rehabilitation. Not all families are equipped to care of a severely disabled child in the home. Some families need our assistance in exploring other choices and making decisions about disposition. These decisions involve complex emotional and spiritual dynamics.

To address these concerns, Michelle and I created goals for assisting families in becoming more active and vocal participants in care conferences. Our goals for changing care conferences on the rehabilitation unit have been to:

To prepare staff for the changes in family care conferences, we invited the Center for Grief, Loss and Transition to conduct several in-services for rehabilitation staff in working with grieving patients and families. We invited an ethicist from a large pediatric hospital system to speak to staff about holding effective care conferences that encourage families to talk about their values and beliefs. With the support of the program manager, we met with the interdisciplinary staff to talk about transitioning from our report format to a structure that would encourage conversation and exchange of information. We enlisted the support of the physician leaders in starting the care conference with comments and questions that encourage dialogue, such as:

Informal feedback from staff and families indicate these changes have been helpful. Families are talking more and staff report patient progress and goals in response to questions and concerns from the family. Care conferences have become more like a conversation between two partners—the family and the staff—acting together in the patient’s best interest. The new format encourages exchange of information, provides opportunities for negotiating difficult issues, and provides a regular setting in which we can truly care for the family in an interdisciplinary way.

Do you have thoughts about education & research you’d like to share with your colleagues? Send an e-mail to info@PlainViews.org.

9:40 PM; concert hall; 1st movement Braham’s 4th Symphony. The beeper in my trouser pocket buzzes my left thigh. Man is dying and wants a chaplain. How to —without a Book of Common Prayer (BCP) —help an Episcopal die?

Heavy-mouthed and heavy-tongued (like Moses) the dying patent looked at me. I Aaron? Two strangers had become brothers to the Promised Land, until they dearly parted. When partnering with the dying it is always the first time for each.

My instincts suggested; my training assented to a means. 1st - Give blessed assurance. G_d, saw, heard, and responded to him. I was evidence. 2nd - Create a sacred space for drawing last breaths.

His breath evenly pulsed in hollow bursts. With each breath I said simple words. “Faith”; “Grace”; “Love”; “Comfort”; “Peace”; and "Holy" etc.; a breathing litany. I matched his rhythm. I pray, someday, this for me. Our eyes were in symbiotic communion. We breathed together. Fear? Passing away. Where?

Next, create a space. I wombed him with light. He welcomed me to. I knew. One does when in communion.

I placed my right hand on his head’s crown and said: “Through my hand G_d touches you. G_d gives you light. Let that light that comes through my hand womb you. Let the light that passes from G_d through my hand enter your head womb you now.”

Progressively, head to toe I suggestively wombed his body in G_d’s light. At the end, I said, “Now I am going to hold your left hand with my left hand. Your womb of light will be complete. Receive the life —the light —the love that will womb you into Eternity’s rest and Heaven’s glory. Allow this womb of light to so nurture you as the womb that brought you to this moment did —Continue on your journey —New life, new life.”

At this point his breathing was ceasing. The inside of his mouth was filling up with matter. He was advancing. I was nurturing.

It was so smooth a slip into that next place. The three women at the foot of the bed who had been attending him grasped the passing before I did. I did not comprehend the moment of our birth. Twins for a time we were.

I will never have the established authority of a priest. The Last Sacrament is for consecrated hands. Holy Mother The Church’s authority ambiguously authorizes me and causes doubt. She taught me the vocabulary of essential holiness. Need prescribes application. I was in a conflict between Tradition’s necessary power and Death’s spontaneous authority. The power of the BCP history was absent. Urgency effected an improvised last sacrament. G_d was facilitating my hands without historic formulas. I had not doubt. I had no spiritual impotency. Ironically, unstoppable existing conditions imposed freedom. I fertilized a womb. His eyes said “Amen”when I sought his consent. His delivery was by loving hands. He died at birth. He left me.

“He was waiting for you,”the ladies said. They all cried happily at the end.

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.

We look forward to hearing from you.

I am the parent of a twelve-year-old boy with an autistic spectrum disorder, though one not nearly as severe as the one presented here. My wife and I have been through decisions on treatments that we would not use and treatments we would. This case is unusual in that the parents are seeking a surgical solution to a condition that has been "spiritually" discerned. I agree that the doctor's obligation to the patient to "Do no harm" by refusing to operate on a "well" patient. His further obligation to the patient involves exploring with the parents what treatments they have attempted. If he is not familiar with treatment modalities for autistic spectrum disorders, he should seek some consultation. I agree that the "religious" issue is a "red herring."

Rev. Jon Altman, BCC
Ovett and Mt. Olive United Methodist Churches
Jones County, MS

A twelve-year-old boy diagnosed with autism is the focus of CaseConference 7#. Or, the boy should be the focus. He is not. The case presentation, reader responses, and resolution focus on “supporting”everyone except the boy: his physician, his family, their religious advisors. Perhaps the assumption is that by addressing the various adults’professional, emotional, and religious concerns, the boy will benefit, albeit indirectly.

The case is presented as a dilemma in supporting a physician’s “professional integrity”and assisting a hyper religious family. Where is empathy and concern for the mentally compromised child who is the patient? Where is commitment to discerning and advocating the patient’s best interests, which lies at the heart of “doing”bioethics?

The physician and chaplain permitted the family’s church leaders to shape the issue as “religion.”It is not. “Holy Mother”asserts no religious principle or eternal consequence for medical action or inaction. (unlike the Jehovah’s Witness cases where authorizing blood transfusions for one’s child is contrary to church teachings and done at the spiritual peril of both parent and child).

The real issue is competing diagnoses and treatment plans. The conflict is between the diagnosis and treatment plan of physicians and the diagnosis and treatment plan Holy Mother received in a vision. Religion is a red herring. As long as it swims, attention is diverted from the care –immediate and long term –of the patient.

The chaplain and physician should have named this for what it is: pressure on surrogate decision makers (the parents) to choose between differing opinions about the treatment of their child. Exploring the physician’s “personal source of spiritual strength and faith”is irrelevant to the medical validity of his refusal to perform contraindicated surgery. The parent’s coming to appreciate that his refusal is based on his commitment to their son’s best interests would be highly relevant.

This case is ripe for a bioethics consult and/or bioethics mediation by professionals trained to perform these services.[1] An ethicist would re-establish focus on the patient, reframe the issues. He or she would articulate the applicable ethical principles: nonmaleficence –not performing medically contraindicated surgery; beneficence –working through and resolving the diagnosis and treatment conflict with the parents rather than passing the child on to another medical specialist; respect for the patient’s personhood and the surrogate decisions maker’s (parents) dilemma in discerning the patient’s best interest; justice –not permitting medical staff and resources to be hijacked and squandered by a parallel treatment modality however well meaning its proponents.

Both the ethics consult and mediation process would interpret for the family the medically accepted treatment norms and best practice standards. Each process would engage them and their supporters in finding space within the norms and practices to realize their hopes and beliefs –but not to the detriment of the patient.

[1] A bioethics mediator would probably meet separately with the medical staff, the chaplain, the family, the Holy Mother with priest, and perhaps the patient. In addition to listening to each perspective, the mediator would, as appropriate, provide education around medical facts about autism, relevant best practice standards, ethical principles, laws regarding child protection requirements (obtaining a medical guardian ad litim might be relevant), and convey to all the sense that each person’s position is informed by their interest in the child’s well being. After these individual meetings, the mediator would likely assemble the entire group to focus on their common commitment to the boy’s immediate and long-term well being. The process of identifying the common interest frequently permits softening of conflicting positions and acceptance of specific, if somewhat modified, medical recommendations.

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.

Hospital policy is first priority, and is in need of severe revision. I don't know of an OPO that supports physicians requesting organs. I believe that it is law that the OPO does organ requesting or delegates. The reason the OPO industry is moving toward the HUDDLE is to avoid this kind of issue. The OPO needs to be called immediately and provide the expertise in management of care and process.

There is no hurry to get consent here. The family needs the chaplain to provide the spiritual presence to help work with the shock, fear, anger, and ultimately grief. That being the primary focus will help the issue of donation at a later stage. When the time comes for preparing for request I recommend that Interpretive Services be used to alleviate the chaplain from having to step out of the support role

Another issue to remember is that we now have Donation After Cardiac Death (DCD) which may be a factor should the patient not actually progress to Brain death.

Rev. Roy Sanders, M.Div, B.C.C, Diplomate in CPE Supervision
Director Spiritual Health Services & CPE
Truman Medical Center Hospital Hill

I believe the family's feelings of shock need to be taken into consideration. It's not helpful to the family for the hospital to "appear" to be in a hurry to harvest organs when they have not had a chance for the news to sink in. Since the case does not give the time
frame in which all of this took place, it is difficult to even pose what should be done- other than sometimes the hospital policy can be the best standard to abide by. In having experiences like this myself as a chaplain, I know that there is a way to put the patient on life support for an undetermined amount of time while a family makes a decision. Perhaps this case strikes a nerve because the case that I was a part of, the representatives from the organ donor network seemed to pressure the mother of a 14 y/o pt to the point that she did not give any of his organs; she wanted him to die whole. The family ultimately felt like
the hospital staff was being ghoulish. I would say that the chaplain's role is to not rush the family and to be an intermediary between the hospital and the family and provide comfort and support to a family who is experiencing the worst tragedy they could ever face. I would also say that the physician is overstepping bounds when it comes to asking the chaplain to "feel out" the family; the chaplain should refer to hospital policy and wait for the organ donor network to arrive.

Rev. Amy Jo Jones, BM, MM, MDiv., BCC
Chaplain/Grief Support Center Coordinator
Big Sky Hospice
Billings, MT

A 23-year old Hispanic male is brought into the ER unconscious. He is diagnosed with an intracranial hemorrhage which is quickly swelling his brain. There is no chance that he will recover. The family is naturally very distraught. The doctors start talking about organ donation. The chaplain, who has been sitting with the family, is asked to "feel them out" and see if they are willing to allow his organs to be harvested once it is determined that he is brain dead. It is the hospital's policy that the only one who should approach the family is someone from the organ donor network or the attending physician. The attending physician does not speak Spanish and feels uncomfortable broaching the subject with the family since they did not want to believe his original diagnosis and prognosis.

Bali: Mask of Rangda, filmed just over three decades ago, captures an extraordinary psychodrama, a cultural and religious tradition acted out on the lush island of Bali.

Once a year, in order to exorcise violence and maintain their peaceful culture, the Balinese rice farmers and artisans don God-like masks representing different aspects of the human soul and enter into deep trances. Their ritual descent into madness leads, according to their tradition, to a rebirth of sanity and wholeness and thereby allows the Balinese to preserve the spiritual cooperation so essential to their culture.

Also captured on camera during filming of this ritual is a drama in the manner of an ancient Greek tragedy, which is called the Ketjak. The Ketjak involves a chorus of 250 villagers who chant in a distinctive and haunting manner this ancient story of renewal. In the Balinese annual ritual of good versus evil is an elegant acknowledgement of the complexity of human behavior, a reminder to Chaplains of the universality of humanity.

If you are interested in purchasing this film, you can do so at www.hartleyfoundation.org. Just click on “Hartley Classics”on the homepage for more information. The cost of the film series is $19.95 for a VHS.

Transplantation of organs and tissues is one of the most highlighted issues in healthcare today. It is also one that is laden with ethical issues and potential dilemmas that professional chaplains and counselors may be asked to address. In Transplantation Ethics, Robert Veatch draws on his extensive experience as an ethicist to explore these issues. He suggests that there are three primary ethical areas: the definition of death, organ procurement, and organ allocation. His book is organized according to these three parts.

His first chapter outlines the stance of major religious traditions; the second provides an overview of ethical theory. Both provide basic theoretical background to consider the ethical pieces. The remainder of the book explores in more detail the three areas: death, procurement, and allocation of organs.

Particularly helpful for the professional chaplain and counselor is Veatch’s summary of issues of brain death, including a historical overview of its understandings and morally problematic issues in language and practice. He also clearly sets out the various theories and practices surrounding organ procurement and allocation. He possess a great deal of knowledge and expertise, and his layout and language are clear, systematic, and useful.

While some clinicians may find Veatch’s book to be either too simplistic or overly clinical, it is an excellent and thought-provoking volume for professional pastoral care providers. His use of case studies brings the ethical concepts into clinical practice to which professionals can relate. As chaplains become more involved in caring for patients and families faced with the decision to donate or the hopes of becoming a recipient, it is a valuable addition to one’s library.

Transplantation Ethics. Veatch, R. (Washington D.C.: Georgetown University Press, 2000), 427 pp.

Do you have thoughts about these reviews you’d like to share with your colleagues? Send an e-mail to info@PlainViews.org