John J. Paris

Treatment decision-making for patients with the Herlitz subtype of junctional epidermolysis bullosa

The Herlitz subtype of junctional epidermolysis bullosa (JEB-H) is a lethal genetic disorder characterized by recurrent and persistent erosions of the epithelial surfaces that heal with exuberant granulation tissue. In addition, respiratory distress, refractory anemia and failure to thrive are often seen. Mortality in the first year of life approaches 90%. JEB-H is caused by mutations in the genes that encode the protein laminin 5, a structural molecule involved in the adhesion of epidermis to dermis. There is currently no cure for JEB-H. Medical interventions treat complications but do not ultimately limit mortality. Ethical principles contend that offering comfort and company to the patient and family, not aggressive therapies, should comprise the mainstay of care for affected infants.

Does compassion for a family justify providing futile CPR

The purpose of cardiopulmonary resuscitation is the prevention of sudden, unexpected death. Cardiopulmonary resuscitation is not indicated in certain situations, such as in cases of terminal irreversible illness where death is not unexpected or where prolonged cardiac arrest dictates the futility of resuscitation efforts. Resuscitation in these circumstances may represent a positive violation of an individuals right to die with dignity. American Heart Association Report on CPR (1974)

Has the Emphasis on Autonomy Gone Too Far? Insights from Dostoevsky on Parental Decisionmaking in the NICU

Treatment of extremely premature infants in a high-technology neonatal intensive care unit (NICU) frequently takes on a life of its own. Although bioethicists and courts agree that there is no ethical or legal difference between withholding or withdrawing a respirator from a patient, parents and physicians find the withdrawal much more emotionally troubling. It is apparent in medical narratives that people are not eager to take responsibility for tragic decisions. The authors believe that a similar pattern is prevalent in many end-of-life medical decisions, particularly those made in the NICU. Family members may want the treatment to be withdrawn, but no one wants to be the one to give the directive to do so. As evidence, the authors cite the experience of a neonatal intensive care doctor as he describes the process of decision-making in the NICU.The authors suggest that when, despite our best efforts, medical interventions on the extremely premature infant do not succeed in reversing disease processes, we need not compound the grief of parents by asking their permission to withdraw the failed therapies. It is enough for the parents to agree that in light of their baby’s condition, the focus should be on keeping the child’s final moments as comfortable as possible. Then the most the physician can do is to support the parents as they keep company with their baby in the last stages of its brief

Ethical and legal issues in intensive care.

The findings of the SUPPORT study, the largest, most comprehensive and costly study ever undertaken on decision making for critically ill patients, revealed a wide ranging gap between patient preferences and physician behavior with regard to treatment decisions for seriously ill patients. The ethical issues raised by that disparity are intensified as we enter into a market-driven managed care delivery system. This essay explores recent ethical and legal developments on several emerging issues: the decision making process; DNR orders; brain death; withdrawal of treatment; physician assisted suicide; and the constraints of managed care.

Unilateral do-not-resuscitate order in the neonatal intensive care unit.

Despite a plethora of articles and now a book on the topic of physician refusal of ineffective or so-called “futile” treatment, there is still no definitive court ruling on the subject nor a consensus in the bioethics or medical communities on the issue. What is involved in the dispute is not only the limits, if any, of patient or parental determination of medical treatment but the role of professional integrity and of the physician’s commitment to do no harm. When the clash between autonomy and physician values involves the emotionally laden case of a seriously compromised neonate, as is true in the case of Baby S, the difficulty is compounded.

Terri Schiavo and the use of artificial nutrition and fluids: insights from the Catholic tradition on end-of-life care.

The recent events surrounding the case of Terri Schiavo have highlighted the moral implications of end-of-life care. Among the issues raised by Terris parents against the withdrawal of her feeding tube was that doing so would be “euthanasia” and, as such, would violate their daughters Roman Catholic religious beliefs. The emotionally charged rhetoric and the political posturing in this case drowned out both rational discourse and historical memory. Politicians and even a few bishops and cardinals were quick to join the parents in denouncing the removal of Terri Schiavos feeding tube as “euthanasia” or “murder.” However, the interpretation of the Catholic position on the sanctity of life that led to that moral judgment is not in line with the centuries-long Catholic position on end-of-life care.

Hyperbaric Oxygen Therapy for a Neurologically Devastated Child: Whose Decision Is It?

A recent case highlights one of the on-going and unresolved controversies in pediatric ethics: who makes treatment decisions for children. Children, by definition, do not have the maturity to make medical choices. Those decisions must be made for them. The issue remains by whom and on what standard those choices should be made.

Ending innovative therapy for infants at the margins of viability: case of twins H.

Reports of “miracle babies” such as the McCaughey septuplets, the intact survival of a 360-gm girl born at 26 and 1/7 weeks’ gestation, or the even more startling news of a 280-gm twin girl born at 26 and 6/7 weeks’ gestation who is now in grade school and developing normally have led to the expectation that medicine can rescue almost every neonate beyond 22 weeks’ gestation. Confirmation of this belief is found in a recent essay in the Journal of Perinatology by Sanders et al., who note that 82% of neonatologists surveyed would ventilate an infant born at 23 weeks’ gestation. That number increases to 95% for infants delivered at 24 weeks’ gestation. For the respondents in the Sanders survey, any prediction of ,100% mortality justifies an attempt at resuscitation. These data on the willingness of physicians to attempt resuscitation on infants at the very margins of viability are confirmed in other multiple studies done over the past decade. The deciding factor in these cases is not physician assessment of potential for survival, but rather parental request for resuscitation. This is true, for example, in the study by Doran et al. of delivery room resuscitation at the University of North Carolina (Chapel Hill, NC), where he notes that parents are seen as the primary decision-makers. In that study, all decisions made by parents to withhold resuscitation infants of 23 to 26 week’s gestation were followed. In 82% of the cases in which there was disagreement, the parents’ desire for more aggressive treatment was honored. In only 2 of 11 cases in which there was disagreement with parents on providing resuscitation was that procedure omitted. In the 12 cases in which the parents’ wishes were unknown, 11 (92%) were resuscitated, including 3 for whom the physicians would have preferred to provide only comfort care. Physician unwillingness to limit or omit interventions when the outcome is anything ,100% certain, coupled with the dominant role parents have in the contemporary American setting, guarantees that if the parents request it, resuscitation will be attempted on nearly every infant, even those at the outer margins of viability. The ethical concern today is what happens when the prognosis of infants at the margin of viability shifts from uncertain to dim to dismal? In the present medical-legal environment, the tendency is still to do whatever the parents demand. We present a recent case to explore the implications of such a course.

The Charlie Gard case: British and American approaches to court resolution of disputes over medical decisions

The Charlie Gard case: British and American approaches to court resolution of disputes over medical decisions

Circulatory arrest in a brain-dead organ donor: is the use of cardiac compression permissible?

Care of the brain-dead patient is common in intensive care practice. Aggressive donor management is advocated to increase supply of viable organs. Significant controversy exists over cardiac resuscitation in patients determined dead by cardiac criteria. The issue, till now, has not been addressed in brain dead patients. We discuss a case of cardiac resuscitation of a brain-dead donor to ensure organ donation. This case allows us to examine the use of brain death criteria to declare death, the controversy regarding cardiac resuscitation in organ donor patients, and the standards for use of cardiac resuscitation in the organ donor declared dead by brain death criteria. The consent process for organ donation in brain dead patients should address the possibility of subsequent cardiac arrest.