Using the 'F' Word - When Parents and Doctors Disagree

Ethicists Tackle Contentious Topics - Futility, Refusal of Life-Sustaining

Care and Using Siblings for Transplants



Jul 13, 2007, 01:00 ET from Seattle Children's Hospital

    SEATTLE, July 13 /PRNewswire/ -- The Treuman Katz Center for Pediatric
 Bioethics at Seattle Children's Hospital kicked off its third annual
 conference today in Seattle. Ethicists gathered to discuss fundamental
 issues in the pediatric care of children, topics such as who decides when
 the treatment of a child is futile.
     Parents Request "Futile" Treatments
     What are the limits of medical intervention? When should treatment be
 considered "futile"? The majority of the medical community agrees that care
 is futile when it does not achieve its purpose. But medical ethicist Dr.
 Norman Fost, professor of pediatrics and bioethics, University of
 Wisconsin, cautioned that there is no definitive definition of futile
 treatments.
     "The fact that a treatment hasn't been tried or hasn't been successful
 in the past does not mean it will not be successful in the future," said
 Fost. "Some medical professionals deem any treatment that has not worked in
 100 cases is not viable. Many parents argue a one in 10,000 chance still
 isn't zero."
     To determine whether a treatment is futile, ethicists argue that we
 must look at whether the patient is gaining anything from the treatment. If
 life-saving actions are taken for a child whose quality of life will be
 poor, who does that serve? Fost reminds us that these are personal value
 judgments and not medical judgments. This is why, in part, the medical
 community cannot agree on a specific definition for futility in medical
 treatments. The search for an ultimate definition of futility is futile,
 Fost argues.
     Can Physicians Refuse to Provide Life-Prolonging Medical Interventions?
     The father of a child with severe neurological damage asks for a
 treatment that the medical community agrees will not work. In fact, it may
 put the child at even higher risk. But the father goes to the media and the
 court; the court orders the hospital to give the treatment a try. Since no
 U.S. court has ever refused life-sustaining treatment without parental
 consent, should hospitals save the court costs and just abide by whatever
 the parents request, for as long as they request it?" asked John J. Paris,
 SJ, PhD, professor of bioethics, Boston College. "Is that responsible
 medical care?"
     "We are all going to die," said Rev. Paris. "So what is the best way to
 treat a dying child -- and who decides?" Paris suggested that treatment
 must be in the best interest of the patient. So, if technology can prevent
 death, but it cannot restore well-being, what is the benefit? Balancing the
 benefit and burden of medical intervention is the job of everyone involved
 in the care of the patient.
     Pediatric Sibling Transplants
     Using sibling transplants for bone marrow and other regenerative
 materials is well accepted in the pediatric transplant community. Most
 centers will not perform solid organ transplants on underage siblings
 unless mandated to do so by the courts or as a last resort. "It is assumed
 that having a healthy sibling is enough of a benefit to outweigh the minor
 discomfort and small risk of a bone marrow transplant," says Rebecca Pentz,
 PhD, professor of hematology and oncology in Research Ethics, Emory
 University. "However, there is little or no literature to support that
 theory."
     Adults who donated solid tumors to unrelated patients experienced
 increased self-esteem, pride and higher self-worth. There are varied
 opinions about the benefits to underage donors. The sibling donors may
 experience high self-esteem and improved relationships with the family.
 But, sibling donors whose transplants were unsuccessful experience guilt,
 shame and anger, Pentz added.
     The current ethical justifications for sibling donation are the best
 interest of the donor, closeness to the family and obligation to the
 family. The current data to support any of these assumptions is sparse, at
 best.
     Should Developmentally Impaired Children Receive Transplant Organs?
     If a child is high functioning and can attend school should they be
 more likely to be listed for an organ transplant than a child who is
 profoundly developmentally impaired (with no mobility or measurable IQ)?
 "It is very common for hospitals to use developmental delay as a factor in
 making the decision about whether to list patients for transplant," said
 David Magnus, PhD, associate professor of pediatrics and medicine, Stanford
 University. "A few U.S.transplant programs have admitted that they exclude
 any patient with a delay, regardless of the severity of their case"
     Some centers argue that these patients would have poor outcomes. In
 fact, there is little evidence that the outcomes for these children are
 different than those of normal, healthy children. The ethical dilemma, says
 Magnus, is weighing the responsibility of scarce organ resources with the
 physician's obligations to treat every patient fairly. He suggests that all
 children should be entitled to consideration for transplant.
     Guest speakers included Dr. Norman Fost from the University of
 Wisconsin, Dr. Lainie Friedman Ross from the University of Chicago, Dr.
 Christine Harrison from the University of Toronto, Dr. Rebecca Pentz from
 Emory University, Dr John Paris from Boston College, Dr. David Magnus from
 Stanford University, and Dr. Douglas Diekema and Dr. Benjamin Wilfond from
 the University of Washington.
     The conference continues tomorrow and can be seen at
 http://bioethics.seattlechildrens.org. For more information on the
 conference please visit http://www.seattlechildrens.org/bioethics/.
     About Children's Hospital and Regional Medical Center
     Consistently ranked as one of the best children's hospitals in the
 country by U.S. News & World Report, Children's serves as the pediatric
 referral center for Washington, Alaska, Montana and Idaho. Children's has
 been delivering superior patient care for 100 years, including advancing
 new discoveries and treatments in pediatric research, and serving as a
 primary teaching, clinical and research site for the Department of
 Pediatrics at the University of Washington School of Medicine. For more
 information about Children's, visit http://www.seattlechildrens.org.
 
 

SOURCE Seattle Children's Hospital
    SEATTLE, July 13 /PRNewswire/ -- The Treuman Katz Center for Pediatric
 Bioethics at Seattle Children's Hospital kicked off its third annual
 conference today in Seattle. Ethicists gathered to discuss fundamental
 issues in the pediatric care of children, topics such as who decides when
 the treatment of a child is futile.
     Parents Request "Futile" Treatments
     What are the limits of medical intervention? When should treatment be
 considered "futile"? The majority of the medical community agrees that care
 is futile when it does not achieve its purpose. But medical ethicist Dr.
 Norman Fost, professor of pediatrics and bioethics, University of
 Wisconsin, cautioned that there is no definitive definition of futile
 treatments.
     "The fact that a treatment hasn't been tried or hasn't been successful
 in the past does not mean it will not be successful in the future," said
 Fost. "Some medical professionals deem any treatment that has not worked in
 100 cases is not viable. Many parents argue a one in 10,000 chance still
 isn't zero."
     To determine whether a treatment is futile, ethicists argue that we
 must look at whether the patient is gaining anything from the treatment. If
 life-saving actions are taken for a child whose quality of life will be
 poor, who does that serve? Fost reminds us that these are personal value
 judgments and not medical judgments. This is why, in part, the medical
 community cannot agree on a specific definition for futility in medical
 treatments. The search for an ultimate definition of futility is futile,
 Fost argues.
     Can Physicians Refuse to Provide Life-Prolonging Medical Interventions?
     The father of a child with severe neurological damage asks for a
 treatment that the medical community agrees will not work. In fact, it may
 put the child at even higher risk. But the father goes to the media and the
 court; the court orders the hospital to give the treatment a try. Since no
 U.S. court has ever refused life-sustaining treatment without parental
 consent, should hospitals save the court costs and just abide by whatever
 the parents request, for as long as they request it?" asked John J. Paris,
 SJ, PhD, professor of bioethics, Boston College. "Is that responsible
 medical care?"
     "We are all going to die," said Rev. Paris. "So what is the best way to
 treat a dying child -- and who decides?" Paris suggested that treatment
 must be in the best interest of the patient. So, if technology can prevent
 death, but it cannot restore well-being, what is the benefit? Balancing the
 benefit and burden of medical intervention is the job of everyone involved
 in the care of the patient.
     Pediatric Sibling Transplants
     Using sibling transplants for bone marrow and other regenerative
 materials is well accepted in the pediatric transplant community. Most
 centers will not perform solid organ transplants on underage siblings
 unless mandated to do so by the courts or as a last resort. "It is assumed
 that having a healthy sibling is enough of a benefit to outweigh the minor
 discomfort and small risk of a bone marrow transplant," says Rebecca Pentz,
 PhD, professor of hematology and oncology in Research Ethics, Emory
 University. "However, there is little or no literature to support that
 theory."
     Adults who donated solid tumors to unrelated patients experienced
 increased self-esteem, pride and higher self-worth. There are varied
 opinions about the benefits to underage donors. The sibling donors may
 experience high self-esteem and improved relationships with the family.
 But, sibling donors whose transplants were unsuccessful experience guilt,
 shame and anger, Pentz added.
     The current ethical justifications for sibling donation are the best
 interest of the donor, closeness to the family and obligation to the
 family. The current data to support any of these assumptions is sparse, at
 best.
     Should Developmentally Impaired Children Receive Transplant Organs?
     If a child is high functioning and can attend school should they be
 more likely to be listed for an organ transplant than a child who is
 profoundly developmentally impaired (with no mobility or measurable IQ)?
 "It is very common for hospitals to use developmental delay as a factor in
 making the decision about whether to list patients for transplant," said
 David Magnus, PhD, associate professor of pediatrics and medicine, Stanford
 University. "A few U.S.transplant programs have admitted that they exclude
 any patient with a delay, regardless of the severity of their case"
     Some centers argue that these patients would have poor outcomes. In
 fact, there is little evidence that the outcomes for these children are
 different than those of normal, healthy children. The ethical dilemma, says
 Magnus, is weighing the responsibility of scarce organ resources with the
 physician's obligations to treat every patient fairly. He suggests that all
 children should be entitled to consideration for transplant.
     Guest speakers included Dr. Norman Fost from the University of
 Wisconsin, Dr. Lainie Friedman Ross from the University of Chicago, Dr.
 Christine Harrison from the University of Toronto, Dr. Rebecca Pentz from
 Emory University, Dr John Paris from Boston College, Dr. David Magnus from
 Stanford University, and Dr. Douglas Diekema and Dr. Benjamin Wilfond from
 the University of Washington.
     The conference continues tomorrow and can be seen at
 http://bioethics.seattlechildrens.org. For more information on the
 conference please visit http://www.seattlechildrens.org/bioethics/.
     About Children's Hospital and Regional Medical Center
     Consistently ranked as one of the best children's hospitals in the
 country by U.S. News & World Report, Children's serves as the pediatric
 referral center for Washington, Alaska, Montana and Idaho. Children's has
 been delivering superior patient care for 100 years, including advancing
 new discoveries and treatments in pediatric research, and serving as a
 primary teaching, clinical and research site for the Department of
 Pediatrics at the University of Washington School of Medicine. For more
 information about Children's, visit http://www.seattlechildrens.org.
 
 SOURCE Seattle Children's Hospital