- Email: [email protected]
Additional comment
50 6
Current comment
cannot make a decision about his medical management. The decision is the family's, and physicians are their advisors. On what basis do we decide how to manage chronic severe renal disease in children? Are we justified in withholding prolonged dialysis or renal transplant? These decisions vary, as do philosophical attitudes. T h e younger the physician, the more reluctant he is to admit defeat. He is less likely to consider the value of constant Supportive therapy and the importance of never abandoning the patient, no matter what the course of illness. As he matures he begins to understand the difference between life and living. H e appreciates the fact that a family may be stressed more by the life saved than the death permitted. Parents cannot say "no" to an offer of help, no matter how slim a chance is offered. T h e y live in hope, though they may die in despair. And physicians vary in their need to offer a last desperate chance no matter what the cost. Those of us who live and work in hospitals tend to focus all our efforts on diagnosis and "cure." We try to avoid dealing with chronic or uncurable conditions which thwart our efforts. The history of mental retardation, crippling physical and neurologic disease has been one of frustration for physicians. Often care has been passed to the educator, the physiotherapist, or the new generations of experts in rehabilitation. And all too often alienation has occurred between physicians, disappointed parents, and
The Journal of Pediatrics September 1970
members of other disciplines which must be involved in the care of children with chronic disease. And children are caught between us all. The child with severe renal disease is a patient who is a real threat to the physician oriented to cure all of his patients. Yet the physician who does not hope to remedy or relieve his patient is no physician at all. T h e dilemma is to be realistic about the situation. As the saying goes: "God grant us serenity to accept the things we cannot change, the courage to change the things we can, and the wisdom to know the difference." And this is the doctor's dilemma. When the cost to the child in terms of physical and emotional discomfort is considered, I seriously question the value of chronic dialysis or renal transplant for these patients. In spite of the physician's desire to heal and parents' willingness for "anything to be done," I feel that programs of dialysis and renal transplant for children should be carefully evaluated not in terms of gross survival but in parameters of meaningful growth and development-living. We may find the price the child pays for life too great at present.
Iohn B. Reinhart Departments of Pediatrics and Psychiatry University of Pittsburgh School of Medicine Department o[ Psychiatry Children's Hospital 125 DeSoto St. Pittsburgh, Pa. 15213
Editor's note
See comments re: emotional patterns of the patient and of his family on page 354 of the March issue of the JOURNAL (J. PEDIAT.76: 347, 1970). Dr. Reinhart's comment was sent prior to publication to Dr. Fine and his associates. The following additional comment was submitted by them. Additional comment
On the basis of our experience, we heartily agree with all of Dr. Reinhardt's concerns about the biological, emotional, and social welfare of children with end-stage kidney
disease who are undergoing dialysis and transplantation. We also have seefi a number of children for whom the disease and the procedures involved in the treatment program lead to so much suffering that we asked
Volume 77 Number 3
ourselves whether it would not have been better to desist. If only we could predict which children and which families are those for whom the prolongation of life is justified and which are those where rehabilitation will not be successful! Unfortunately, so far, we do not have the data to predict those families and those children who are good risks for rehabilitation and to identify those who had better be left alone. I t is precisely for this reason that we are working so intensively with the renal program in collecting data and learning more about what is involved for
Current c o m m e n t
50 7
parent, child, the medical community, and the community at large. As physicians, until we know more, we are committed to the goal of maintaining life and function whenever possible. I n response to Dr. Reinhardt's quotation concerning the need to accept things that we cannot change, we would counter with a quotation from Hamlet: " . . . diseases desperate grown, by desperate appliance are reliev'd, or not at all." Barbara M. Korsch, M.D. Richard N. Fine, M.D.
Current comment
cannot make a decision about his medical management. The decision is the family's, and physicians are their advisors. On what basis do we decide how to manage chronic severe renal disease in children? Are we justified in withholding prolonged dialysis or renal transplant? These decisions vary, as do philosophical attitudes. T h e younger the physician, the more reluctant he is to admit defeat. He is less likely to consider the value of constant Supportive therapy and the importance of never abandoning the patient, no matter what the course of illness. As he matures he begins to understand the difference between life and living. H e appreciates the fact that a family may be stressed more by the life saved than the death permitted. Parents cannot say "no" to an offer of help, no matter how slim a chance is offered. T h e y live in hope, though they may die in despair. And physicians vary in their need to offer a last desperate chance no matter what the cost. Those of us who live and work in hospitals tend to focus all our efforts on diagnosis and "cure." We try to avoid dealing with chronic or uncurable conditions which thwart our efforts. The history of mental retardation, crippling physical and neurologic disease has been one of frustration for physicians. Often care has been passed to the educator, the physiotherapist, or the new generations of experts in rehabilitation. And all too often alienation has occurred between physicians, disappointed parents, and
The Journal of Pediatrics September 1970
members of other disciplines which must be involved in the care of children with chronic disease. And children are caught between us all. The child with severe renal disease is a patient who is a real threat to the physician oriented to cure all of his patients. Yet the physician who does not hope to remedy or relieve his patient is no physician at all. T h e dilemma is to be realistic about the situation. As the saying goes: "God grant us serenity to accept the things we cannot change, the courage to change the things we can, and the wisdom to know the difference." And this is the doctor's dilemma. When the cost to the child in terms of physical and emotional discomfort is considered, I seriously question the value of chronic dialysis or renal transplant for these patients. In spite of the physician's desire to heal and parents' willingness for "anything to be done," I feel that programs of dialysis and renal transplant for children should be carefully evaluated not in terms of gross survival but in parameters of meaningful growth and development-living. We may find the price the child pays for life too great at present.
Iohn B. Reinhart Departments of Pediatrics and Psychiatry University of Pittsburgh School of Medicine Department o[ Psychiatry Children's Hospital 125 DeSoto St. Pittsburgh, Pa. 15213
Editor's note
See comments re: emotional patterns of the patient and of his family on page 354 of the March issue of the JOURNAL (J. PEDIAT.76: 347, 1970). Dr. Reinhart's comment was sent prior to publication to Dr. Fine and his associates. The following additional comment was submitted by them. Additional comment
On the basis of our experience, we heartily agree with all of Dr. Reinhardt's concerns about the biological, emotional, and social welfare of children with end-stage kidney
disease who are undergoing dialysis and transplantation. We also have seefi a number of children for whom the disease and the procedures involved in the treatment program lead to so much suffering that we asked
Volume 77 Number 3
ourselves whether it would not have been better to desist. If only we could predict which children and which families are those for whom the prolongation of life is justified and which are those where rehabilitation will not be successful! Unfortunately, so far, we do not have the data to predict those families and those children who are good risks for rehabilitation and to identify those who had better be left alone. I t is precisely for this reason that we are working so intensively with the renal program in collecting data and learning more about what is involved for
Current c o m m e n t
50 7
parent, child, the medical community, and the community at large. As physicians, until we know more, we are committed to the goal of maintaining life and function whenever possible. I n response to Dr. Reinhardt's quotation concerning the need to accept things that we cannot change, we would counter with a quotation from Hamlet: " . . . diseases desperate grown, by desperate appliance are reliev'd, or not at all." Barbara M. Korsch, M.D. Richard N. Fine, M.D.