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Clinical Practice Protocol of Creative Music Therapy for Preterm Infants and Their Parents in the Neonatal Intensive Care Unit
Published on: January 7, 2020
When Is Intensive Care Warranted for the Most Immature Infants?
Joseph W Kaempf1, Luca Brunelli2, Alex Vidaeff3,4
1Department of Value, Research, Innovation, Women & Children's Institute, Providence St. Vincent Medical Center, Providence St. Joseph Health System Oregon, Portland, Oregon.
Insights
Decisions about high-technology interventions for extremely premature newborns involve uncertainty and risk. Shared decision-making, respecting parental values and informed consent, is crucial for navigating these complex ethical challenges in neonatology.
Area of Science:
- Neonatology
- Perinatology
- Bioethics
Background:
- High-technology interventions for extremely premature infants (22-24 weeks gestation) present significant ethical and clinical challenges.
- While survival rates are increasing, substantial morbidity and neurodevelopmental impairments persist, with outcomes varying among families.
- Maternal risks associated with delivery and the high costs of intensive care are significant considerations.
Purpose of the Study:
- To explore the complexities surrounding decisions about initiating, withdrawing, or continuing intensive care for extremely premature infants.
- To emphasize the importance of shared decision-making, informed consent, and respecting parental autonomy in neonatology.
- To address the ethical tensions between physician and parental perspectives in end-of-life care for neonates.
Main Methods:
- The study reviews current practices and ethical considerations in managing extremely premature infants.
- It analyzes the conflict between physician-driven technological imperatives and parental values and preferences.
- The paper advocates for a framework of shared decision-making endorsed by major pediatric and obstetrical organizations.
Main Results:
- Survival rates for 22-24-week infants are improving with active care, but long-term neurodevelopmental outcomes remain a concern.
- Significant disparities exist in care approaches between and within institutions and countries.
- Parental discretion in decision-making may increase due to the inherent uncertainties of extreme prematurity.
Conclusions:
- Shared decision-making, grounded in informed consent and respect for parental values, is essential for navigating care decisions for extremely premature infants.
- Physicians must provide objective outcomes, listen compassionately, and avoid presenting care as a rigid protocol or an unrestricted menu.
- Acknowledging the inherent contingencies and potential biases (nihilism or therapeutic fury) is vital for ethical practice.
Abstract:
Withholding or starting, withdrawing or continuing, high-technology interventions available to extremely premature newborns is a fundamental challenge in obstetrics and neonatology. Attempting to save an infant's life is a judgment fraught with uncertainty and risk because suffering can be prolonged, long-term outcomes are frequently unfavorable, and socio-economic inequities are burdensome to families. Survival rates of 22-23-24-week infants are increasing in hospitals that promote "active care," yet morbidity rates and long-term neurodevelopmental impairments remain substantial and not improving. Outcomes acceptable to some pregnant women and families are not to others. Delivery of premature infants, particularly by cesarean section, is associated with maternal health risks. Intensive care of extremely premature infants is expensive, and lost opportunity costs are under-appreciated. Autonomy of pregnant women contrasted with the rights of the fetus and infant are culture and religion-affected, technology-influenced, and powerfully persuaded by physicians and institutions who possess a conflict of interest related to career goals, research, and income, all factors not necessarily shared by pregnant women.Physicians should resist dogmatic positions tethered to unproven technologies and nonrigorous evidence. Some hospitals promote near-universal intensive care of 22-23-24-week infants while others recommend palliative care, differences curiously seen between and within countries, even cities. The legitimate zone of parental discretion is characterized by the value pluralistic shared decision-making of informed consent and is endorsed by the American Academy of Pediatrics, the Canadian Paediatric Society, and the American College of Obstetricians and Gynecologists. Physicians should objectively provide clinical outcomes, compassionately listen to pregnant women's concerns and preferences, and resist presenting care options as a restrictive protocol, or a wide-open menu. Because there is no unifying cultural or bioethical ethos, we should embrace shared decision-making recognizing inherent contingencies and tensions, with humble circumspection of possible nihilism (which might influence palliative care), and therapeutic fury (which might promote unreasonable zeal for interventional care). · Extreme prematurity requires knowing outcomes.. · Parental discretion may broaden with uncertainty.. · Shared decision-making assumes informed consent.. · Parental values differ from the values of physicians.. · Asymmetry of responsibility supports parental values..
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