Sacred Spaces: The Ethic of Compassion (Jan-Feb 2005)

By Matt Dabbs

by Don Moore, M.D.
January – February, 2005

The opinions and views expressed in the following “Sacred Spaces” article by Don Moore, M.D., are those of the author and do not represent the views of Vanderbilt University.

I drove to the child’s funeral as dark clouds loomed across the sky. The wind ripped the leaves from their connection to earth long before their due time had come.

This scene outside my comfortable car reflected the inner turmoil that raged in my mind. My fear was that the burial would be hindered by the recent trail of thunderstorms we’d been experiencing that summer. At least that was the best intellectual reasoning my mind could conjure to explain the sensation in my gut. Was the emotion really my own fear of how I might react to the burial of the child, my patient?

I met with the child’s parents briefly at the tiny casket and again shared a limited hug through the tears. There were familiar faces of the family from the children’s hospital intensive care unit, in particular the gifted nurses who devoted themselves to the care of this precious child for months of intensive medical care. The most important faces however were those of a family who had no choice but to carry out the very ritual they prayed would never come.

As we departed the funeral chapel, we moved past the tiny casket for our final goodbyes. I approached the casket and began to fight the tears. Moving away, I regained composure for that is my learned role as a physician and thanked the pastors who delivered the service. I then joined the procession as we walked to the gravesite, passing countless other names on tombstones, reminders of those departed whose stories were unknown to those of us walking on the earth above. It was as if the cemetery was briefly awakened by the quiet yet familiar sounds of the grieving. Or were we, the living, beginning to gain a new perspective of life that can only come from among the dead?

We stood in silence as the parents followed the casket of their son, which was the purest white. As I waited in silence for the casket to make its slow journey to the grave, I reflected on how we had come to this point.

Sacred Spaces by Don MooreThe collision of our lives began in the corner bed space of a busy pediatric intensive care unit. Central to the intersection was a newborn child born with a rare vascular deformity which prevented blood from returning to his heart, a condition that was not compatible with survival without the emergency surgery performed on his first day of life. Though he received the perfect operation, his lungs at birth were badly damaged, as we would learn in the months to come.

I was the pediatric cardiologist assuming his care following the surgery, unaware that what would ensue over the coming months would be a series of heart wrenching decisions and discussions with his parents, the last of which would be the realization that our therapy could no longer sustain their son’s life. He was among the most critically ill infants in recent memory. His body had swollen following surgery preventing the surgeon from closing his chest for days. His heart rhythm was controlled by wires sewn to the surface of his heart, which could be seen beating beneath the thin protective dressings. The majority of blood flow to his body was pumped through a large bypass machine, taking over the function of his weak heart and damaged lungs until they could recover.

It would be months before an attempt at feedings by mouth would even be considered. These memories are unfortunately not the exception in our world of critical care. For most children these intrusions are but a price to pay in an attempt to mend hearts that did not form normally.

The days, the weeks and the months progressed as we forged ahead. Our decision to do so confirmed by his objective improvement and after numerous family meetings in conference rooms and at the bedside. He was able to leave the hospital briefly at almost two months of age. This would be his first Christmas . . . and last.

He returned to the intensive care unit in January where he would ultimately spend the remainder of his life. Birthdays were celebrated in months, not years. Holidays often taken for granted by most were cherished in an intensive care unit. Scars, reminders of his struggle, replaced the many breaches of his skin. He overcame what seemed to be insurmountable obstacles and from this setting, he learned to smile. This was his trademark. As he had done before, this resilient child would once again overcome every hurdle that arose before him.

His ultimate struggle was against the elevated pressures in his lung’s blood vessels, a condition known as pulmonary hypertension. Such elevations of pressure would ultimately take their toll. With cautious excitement, our team had begun the process of planning his discharge from the hospital. Weeks of planning and coordination preceded our final meeting with the family.

Unexpectedly, however, the baby developed a severe setback, from what appeared to be an infection in his lungs, tipping the delicate balance of pressure toward intolerable levels. Despite our final escalation of therapy his condition worsened and it became apparent that he would die.

All objective data lead to reluctant acceptance of this conclusion both by the family and by those of us involved in his care. There were always more studies to perform but we felt we had begun to do things to our patient rather than for our patient.

We had continued to bring him back from more frequent and more severe drops in his oxygen levels. Several conversations with the family followed and we accepted that it was only a matter of time. We again returned to the consideration of the life that was central to the intersection of our own. We could either continue reviving his body or we could allow him to die in peace. For the moment he was sustained only by means of maximal ventilator support, complete sedation and continuous infusions to limit the life threatening rise of pressure within his lung’s blood vessels.

The decision to stop was not made in isolation, but was a culmination of many over a matter of months. Nor was the decision that of one individual but a collection of many based on the available evidence and with consideration to the quality of the child’s life that was before us. The decision was made on July 2, 2003 to withdraw life support. In this case, however, the process began upon his admission to our intensive care unit, for that is where our collective paths collided and when the foundation of relationship was cast. From that foundation, all subsequent decisions were made, the final being of culmination of the former. Without having entered into that relationship and remaining there along the way, the decision process would have become fragmented. Rather than continued escalation of life support, the parents, and we the caregivers, honored their son’s life, by letting it go.

He died peacefully in his mother’s arms on July 2, 2003, at the age of eight months and nineteen days.

They set his casket on a small pedestal as we took our places. A brief prayer was offered followed by the reading of the 23 Psalm. The “grave diggers,” as I’ll call them, proceeded to place his body in the open grave. The flowers were removed carefully from the casket and the casket then carefully dusted by hand. One picked up the casket while the other carefully and almost silently removed the large wooden planks from the site exposing the grave.

Then together, as if they were carrying the Ark of the Covenant itself, they carefully placed the small casket into the earth. They first took dirt with their hands and gently dropped finer particles over the casket. They continued, taking exquisite care to break the larger clumps into fine particles. They began to use their shovels, still working on their knees, as if bowing in reverence on holy ground.

The July humidity brought sweat to their faces, the drops of perspiration dropping silently along with tears from those of us observing this sacred moment. Unexpectedly, they used their shovels gently, carefully tipping them to the side, allowing the fine earth to gingerly find its place around the edges of the casket. At the head, they placed his pillow. The same pillow, which had cradled his body in life, would now join him in death. The filling of the grave continued with reverence and almost complete silence, as if they were afraid to disturb the holy. They moved away quietly and disappeared from site.

I too had learned to disappear from the site of suffering. Admittedly, it is far easier, and acceptable for that matter, to stay distanced rather than to move into unknown and uncomfortable spaces. It is not that our profession wants to stay distant but perhaps we are ill-equipped to process the range of emotional and intellectual challenges that we find there.

Occasionally, there have been moments that demanded my attention and beckoned me further into the sacred space of suffering. I had been well-trained by some of the leaders in the field. An exceptional team of colleagues, nurses and caregivers surrounded me in a state-of-the-art medical facility. I had the skills necessary to personally perform three cardiac catheterizations to confirm and document our progress. We had provided him with the most aggressive cutting-edge therapy available. Yet nothing had prepared me for entering into the unfamiliar space of practical ethics.

I had taken the typical courses in college and medical school, perhaps more than some but had not been challenged to actually meet such situations face to face. Nor was I prepared to cope with the onslaught of emotions involved with keeping a safe professional distance while realizing that at times the barrier demanded destruction so that compassion might become manifest.

This story is unique only in that it is this family’s and mine. There are many other stories preceding this one and many more have already followed, in my practice and in the practice of my colleagues. The ethics of such experiences are difficult if not impossible to consider when in their grasp. I can analyze and ponder the ethics involved but in essence I then assume the role of an observer rather than a participant. It is to attempt compassion without joining in the suffering. It is to verbally order and witness the systematic removal of life sustaining medications and ignore the tears on your own face. These sacred spaces and moments cannot be analyzed, at least in my mind, except to stand in silence and realize that the greatest ethic, and most difficult in my practice, is to join the suffering.

It may approach absurdity to surmise that an ethic exists for digging graves but a complex lesson was reinforced during the simple process of my patient’s burial. There are fundamentals that one must possess regarding the soil, the sod and the requisite tools to dig a hole. The difference comes in the execution of the process, in how the space is approached. The gravediggers approached this space in a different way. They modeled an ethic that transcended what was expected. The space they entered was in fact sacred, beyond words, beyond formulae or structured analysis. Such spaces call us at times to enter, stand in silence, grieve the loss and depart in response with a new appreciation of life.

I left the burial site, scanned the cemetery and saw my new teachers standing on the periphery. I walked across the cemetery and extended my hand in an attempt to further shed the shallow garb of distanced professionalism. I carried away more than sweat and sacred soil on my hands that day. My practice, in medicine and life, is accordingly renewed.New Wineskins


Resources

Vanderbilt Children’s Hospital
The Humanitas Project provides bioethics education on a wide range of issues, such as abortion, embryonic stem cell research, and end-of-life issues. It also publishes a free e-mail newsletter, “Living in the Biotech Century” (available at Humanitas.org). The newsletter is published twice monthly by The Humanitas Project and is a compendium of news, book reviews, commentary, and other resources related to bioethics and biotechnology.

Wesley J. Smith, Culture of Death: The Assault on Medical Ethics (Encounter Books, 2002).
[purchase book at Humanitas site]
Smith’s book is an outstanding introduction to many of the issues being debated in bioethics today: the withholding of life-sustaining measures (like food and water), euthanasia, physician-assisted suicide, health care rationing, and organ donation. Smith, an attorney, presents a compelling case (based on a “human rights” argument) that something has gone terribly wrong in American medicine. The “do no harm” ethic of the Hippocratic tradition has been abandoned.

Charles W. Colson and Nigel M. de S. Cameron, editors, Human Dignity in the Biotech Century: A Christian Vision for Public Policy (InterVarsity Press, 2004). [purchase book at Humanitas site]
From the Introduction: “Just as most Christians were asleep thirty years ago when Roe v. Wade was decided and abortion on demand became legal, we are again in danger of sleeping through another moral catastrophe. With the latest advances in biotechnology, not only are we taking upon ourselves the god-like prerogative of ending human life as we choose (as we have done with abortion and euthanasia), but we are attempting to appropriate the god-like prerogative of making human life as we choose. The most profound question we are being asked today is which is the more grievous sin against God – to take life created in his image or to make life created in man’s image?”

Using both Christian and public arguments, the twelve authors address a wide range of issues that threaten to undermine human dignity in the Bioetech Century: cloning, genetic engineering, embryo research, cybernetics, stem cell research, nanotechnology, gene therapy, abortion, and numerous others.

Web Sites

Christian Medical and Dental Association

Do No Harm
This site is devoted to the ethics of stem cell research.

The Humanitas Project: A Center for Bioethics Education

The President’s Council on Bioethics

Don MooreDon Moore is a pediatric cardiologist at Monroe Carell Jr. Children’s Hospital at Vanderbilt in Nashville, Tennessee.

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Profile photo of Matt DabbsThis author published 1583 posts in this site.
Matt is the preaching minister at the Auburn Church of Christ in Auburn, Alabama. He and Missy have been married 12 years and are raising two wonderful boys, Jonah and Elijah. Matt is passionate about reaching and discipling young adults, small groups, and teaching. Matt is currently the editor and co-owner of Wineskins.org.

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