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Transplantation: A Team Approach
The Chaplain’s Role: A Cardiac Surgeon’s View
Jack G. Copeland, MD
Jack G. Copeland, MD, is the Michael Drummond Distinguished Professor of Cardiovascular and Thoracic Surgery and Chief of the Section for Cardio-Thoracic Surgery at the University of Arizona Health Sciences Center in Tucson, AZ.
The chaplain is a member of the cardiac team. For me there is no doubt about this statement and it seems strange that anyone would question the concept. For over ten years, at the University of Arizona, the chaplain has played a major role in the care of patients undergoing conventional cardiac operations, heart transplants, and artificial heart-bridge-to-transplant procedures. The chaplain has been in attendance at our weekly transplant conference, discussing the patients who are being evaluated for transplantation, those who have just undergone transplantation, and those who are faced with the dilemmas of post-heart transplantation life and long term survival. The chaplain has been available and participated in many situations involving death, termination of life, high risk procedures and a wide variety of day-to-day less critical problems.
From my point of view, the chaplain has entered into dialog with the patient, nurses, physician and surgeon gracefully without forcing any issues with a receptiveness and sensitivity, as well as special training in psychology, which makes him a valuable contributing member of the team, as well as a personal resource for those around him. We have often requested the opinion of the chaplain on complex issues relating to the patient’s perceptions, fears, behavior, social situation, family problems, or imminent death.
Perhaps the best approach to describing how a chaplain interacts in this setting is to describe typical situations in which interaction may take place. Clearly, dealing with life and death situations is the central theme.
Conventional Cardiac Surgery
The patient entering into a conventional heart operation, of which coronary artery bypass and valve replacement are the most common procedures, comes with a keen awareness of his own morbidity and mortality. The situation tests him as a person to confront the facts, accept them, make a decision, and proceed with action. Typically all patients have some fear, a premonition of their own death, a feeling of helplessness, caught up in a world of medical personnel, a sterile appearing environment, and a 24 hour a day time clock which is totally foreign to normal existence. Family is very important for many of these patients. They reach out to family members, friends, and others for help. Many patients freely admit the need for help, others deny it, and this denial itself may be a useful tool in coping with a “bad” situation.
In the balance, on the patient’s side, generally is a strong faith in medicine, and what it can accomplish, and in the physicians, surgeons, nurses, other personnel in the hospital, the hospital’s record, and any other item which might support optimism. This is much the same psychology, although considerably more intense, than that which might be present in a prospective airline traveler when he thinks about his upcoming trip, a good record of his airlines and their flying personnel. For some, religious faith is also a great support.
A positive approach works best in the pre-operative setting, and patients respond well to plans which give them a role in the entire process. Generally, the more information they have about what will happen, the better they can cope. Simple things, like explaining the importance of deep breathing after discontinuation of ventilator support, describing the type of pain they might encounter, and how it relates to pain from other types of operations, how it will be treated and when it will subside and become insignificant, is also important. Rehabilitation concepts, dietary, physical, emotional and job rehabilitation are all things which come into focus, and they help bring a patient through this difficult time. This time is a test and a time when chaplains may be badly needed to provide patients with a non-medical positive perspective.
If all goes well with the operation the complexity of day-to-day recovery provides enough focus for the patient that anxiety, depression and fear are secondary to the practical priorities of the day. Within just a few weeks, with recovery, the test is over and perhaps in many cases, partially forgotten. The need for help and support is considerably less and the patient is nearly back to normal.
Problems and complications in the period after an operative procedure, however, have a different impact. The patient who has been sensitized pre-operatively to the possibility of failures, difficulty, death, pain, suffering, etc., may now be overwhelmed with the reality of his premonition. Depression is quite common and many patients find it difficult to maintain a positive attitude. The harder the situation, the more complicated and the more problems which occur, the deeper the depression and fear of impending death. Families and patients are tested profoundly. They question, now, the credibility of all those around them, the physicians, nurses, institution, procedure, and these questions may, in fact, just represent a deeper probing for answers than we see on the surface. In this situation a positive point of view, a strong support from all comers, including nurses, physicians, the chaplain, the family, is critical. It may make the difference between the patient being able to perform well and survive, as opposed to one who cannot perform well, and may loose strength not only physically, but also psychologically and emotionally and die.
Finally, although the numbers are quite small with modem technology, there are some who may die. In this day of high technology when prolongation of life often intersects with prolongation of death it may be difficult to tell when hope is lost from a medical and physical point of view. Indecision in the face of hopelessness and anxiety on the part of the family can cause great problems. At this point the patient is often comatose or so sick and depressed that his thoughts and feelings no longer enter into the daily dialog. They may be present in the form of a living will, or in the form of discussions with family or the cardiac team prior to decompensation. The real test at this time is the test of the strength of the family and friends. Full communication, of as much information as is known, is the best rule to follow. The family may consume a tremendous amount of the cardiac team’s time. Often deep and lengthy discussions are conducted by the chaplain, the nurses, and the surgeons.
From a medical point of view, the key issue at times of severe illness is whether there is a chance for life, whether life as we know it could continue at some point in the future, or whether in fact the efforts, no matter how well meant, are prolonging suffering, misery, death of the patient and anguish of his family. There may be clear cut criteria, from a medical point of view, but in many cases there are not. Close interaction with the family is the only way to deal with decision making at this time.
The Transplant and Artificial Heart Patient
In general, patients come for transplantation with a life expectancy or prognosis for survival of less than one year.
Those who are sick enough to need circulatory support with a mechanical device have an even grimmer outlook, and may have a prognosis of survival of days or weeks. These potential cardiac recipients generally have a greater perception of immediate risk, need to make peace, plan realistically, and call in strengths and supports. They are aware of the possibility of sudden death and they become proactive, selling themselves as good candidates for transplantation for a new heart, and hopefully a new way of life. Not all of these patients are good candidates. Many have contraindications which would make transplantation or artificial heart implantation not only risky, but so risky that they would probably survive for a shorter period of time if the intervention were taken. There is, therefore, a group who come with high expectations and leave with some element of disappointment, even after hearing the rationale for rejection as a transplant candidate.
Those who are chosen for transplantation have been placed on a waiting list. Unfortunately, the waiting period may be prolonged. In the case of outpatient waiting, a year or more may be required until the patient receives a heart. He must wait for those ahead of him on the list to have their “turns.” In the case of inpatient waiting, for the more critical potential recipient, with intravenous cardiac support, the period may go for months. In either case, there is a constant feeling of anxiety, that one might be called for transplantation at any moment. Certainly there is a desire to be called and a frustration that the phone call doesn’t happen. Depression is very commonly seen in these patients. Anxiety and sometimes hostility is seen in their family members. The possibility of the chaplain entering into this situation is good. Skilled professionals in the area of psychology and social work are also needed. We have found that a prophylactic approach to this situation is best. We assume that all patients are going to have significant problems, and we attempt to prevent and anticipate and forestall these if possible. Discussion, group discussion, and group therapy are ways in which these problems may be identified and unless they are identified, they may grow.
Following transplantation, a great transformation occurs. There is the patient who is converted to a new person. He is no longer an invalid. He is no longer incapacitated, he may work. He is often the focus of a good deal of attention and sometimes publicity. He has been the weakest and most dependent person in the social constellation. He may now become a provider. This is an overwhelming change in some families, one which may lead to social instability.
This recipient of a newly transplanted heart is not totally confident. He feels he cannot trust the new heart to keep him alive, to prevent sudden death, to allow him to return to activity. It is only time and trial and error that leads to confidence that then leads to the ability to return to normal function. Just as with conventional surgery, set-backs, problems, and complications test the patient and his family to question all that surrounds them.
In the setting of cardiac surgery, from the surgeon’s point of view, the successes are highs and the failures are lows. Loss of life is a failure in technique, as well as the loss of a human being. From the nurses’ point of view, loss of life is not only a failure of the medical profession to be able to prolong life, but also the loss of a friend, loss of a person, to whom the nurse has related in a personal way. Clearly there are great needs on the parts of these human beings, as well as patients, for strength, support, focus on the positive, and perspective in order to allow us to proceed with our daily work.
Notes
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Identity, Role, and Task: A Core Perspective on Pastoral Care with Cardiothoracic Transplantations
Tim Thorstenson, MDiv
Tim Thorstenson, MDiv, is a CPE Supervisor with the Department of Pastoral Care at Abbott Northwestern Hospital in Minneapolis, MN. Rev. Thorstenson has been Chaplain with the Cardio-Thoracic Replacement Program at Abbott since 1986.
Oscar Johnson was a 52 year-old fanner in a quiet rural area of southern Minnesota. When I met Oscar he was farming the land on which he had been bom, and on which he had raised his own family. He was rooted in the rich tradition and heritage of basic values, a simple faith, and respect for all of life. He had a straightforward, no-nonsense outlook on life, particularly valuing family, community, and independence. It was not easy for him to enter into the evaluation phase of our transplant program. His emphysema had progressed to the point where he was no longer able to contribute to the tasks of farming, and his quality of life had diminished accordingly. Yet he was ambivalent about undergoing the evaluation, threatened by the loss of his independence, and clearly uncertain about stepping into the wilderness of modem high-tech health care, much less undergoing the rigors of lung transplantation.
Mr. Johnson was not atypical in his feeling of being somewhat overwhelmed, and in his tentative and guarded responses to our medical staff. He was not medically sophisticated and felt “out of his element.” His life situation also posed something of a dilemma to the transplant team personnel. A lack of sophistication and his rural values tended to engender ambivalence in the staff about proceeding with the evaluation, paradoxically reflecting the ambivalence he himself was feeling. And his guarded, self-protected emotional affect tended to engender suspicion in his caregivers and questions about his level of compliance. His entry into the transplant “system” suggested his course would not be an easy one.
Upon first meeting Mr. and Mrs. Johnson, I wondered about the basic ethical principle of autonomy and its corollary, informed consent. Would we be able to honor their autonomy, or had we already violated it on some level by bringing them into this vast wilderness? Had the minimal information they received from their referring physician, and the brief video and the visit by the transplant coordinator, given rise to any meaningful level of true informed consent? Or were we just contributing to that feeling of being overwhelmed and isolated? As I listened to Mr. Johnson’s story I began to get a feel for what they valued spiritually in their lives, for how they found meaning in life and for what gave them hope. As I did so I remember wondering if we were doing this man and his wife a disservice. I was aware of wanting to tell them that they would do well to go home and let life come to its natural, if shortened, conclusion, and not subject themselves to the uncertainty and suffering that I had witnessed so fully in so many previous cases.
But of course when choosing between dying and the chance for living, it is an understandable human response, and one of great value in our society, to “go for it,” no matter what the risk. Over the course ...
