Withholding treatment, withdrawing treatment, and palliative care in the neonatal intensive care unit
Introduction
Advances in neonatal technology and pharmacology (antenatal corticosteroids and postnatal surfactant treatment) have sharply reduced mortality of extremely preterm infants at the expense of an increasing number of survivors with handicaps and disabilities [1]. At the same time, controversy has evolved over whether we are doing the right thing [2]. Is it worth it to institute intensive care at birth to infants at the threshold of viability and how do we face disastrous complications after the institution of intensive care? Although not initiating and withdrawing intensive care from infants born at the limits of viability has been practiced since the start of modern neonatology [2], it raises challenging ethical, moral, legal and emotional dilemmas. Who decides and on what basis? Ideally, life-or-death decisions on behalf of newborn infants are made by the medical team together with well-informed parents, but what should be done if the medical team considers the ultimate responsibility in end-of-life decisions too great a burden for parents to bear [3], [4] or parents do not concur with medical recommendations [4] or, worse, the court of law rules that parents have no right to refuse resuscitation of extremely preterm infants prior to birth because they cannot be fully evaluated until birth [5]? Do we base our decisions on experience with large groups of equally immature infants or on a fleeting assessment at the resuscitation table [5] and where are the data to support the predictive value of condition at birth for survival, much less long-term neurodevelopmental outcome [5]?
Withholding or withdrawing of intensive care for a newborn infant is one step in a process, which begins with a thorough determination of diagnosis and prognosis, followed by decision-making on the basis of futility of treatment or quality-of-life issues, counseling of parents, actual withholding or withdrawing of intensive care and palliative care, perinatal audit, and after-care of the family.
Section snippets
Outcome of extremely preterm infants
Ethical decisions on treatment options for extremely preterm infants should be based on evidence of expected outcome. Various studies published over the last 5 years have provided an impressive body of data on survival and short-term and long-term outcome of extremely preterm infants [7], [8], [9], [10], [11], [12], [13], [14].
Ethical decision making in European NICUs: the EURONIC study group
The decision not to initiate or withdraw life-prolonging medical treatment based on an expected very poor prognosis for later life is taken by the treating physician after consultation with the medical and nursing staff and needs to be carried by this team (consensus) to be executed. Regulations and practices on withholding and withdrawing treatment in neonates vary widely across Europe. The members of the EURONIC (European Project on Parents' Information and Ethical Decision Making in Neonatal
Counseling of parents
The basic goal of counseling is that the physician informs the parents completely about the condition of their child and why the medical team chooses for withholding or withdrawing invasive treatment and makes sure the parents have understood the information.
Withholding/withdrawing intensive care and palliative care
Withholding or withdrawing intensive care at birth or in the NICU has been widely practiced for many years, but there is little information available on its results.
Perinatal audit
To assure quality of care and as part of obstetric and neonatal training programs, all perinatal deaths, complicated pregnancies and critically ill infants admitted to the NICU should be reviewed at regular perinatal meetings. In these meetings special attention should be paid to all aspects of care that may have affected outcome, the appropriateness and application of clinical guidelines, complications, and documentation of the ethical decision-making in the medical records.
After-care of the family
Support for parents and family in the months after the infant's death is essential. Follow-up support is provided by social workers, physicians, and nurses and includes repeated telephone contact, a conference with the family to review the medical events surrounding the infant's death and to evaluate the grieving response of the parents, and referral to perinatal loss support groups in the community.
Dutch point of view and withholding/withdrawing practice
In the Netherlands, neonatal intensive care is not routinely initiated in extremely preterm infants and intensive care is withdrawn if treatment is clearly futile. This policy is based on reports from the Dutch Medical Association and the Dutch Pediatric Association [30], which argue that withholding or withdrawing life-sustaining treatment in newborn infants with extremely poor prognoses is justifiable medical practice and that decisions should be taken by the medical and nursing team together
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2023, Avery's Diseases of the NewbornUnderstanding and addressing barriers to communication in the context of neonatal neurologic injury: Exploring the ouR-HOPE approach
2019, Handbook of Clinical NeurologyCitation Excerpt :This should include providing parents and family with access to emotional and spiritual support from social workers, chaplains, and palliative care team members, as well as a child-life specialist to support the infant's siblings through the experience (Walther, 2005; National Association of Neonatal Nurses Board of Directors, 2015). Engaged clinical teams will help connect families to appropriate support services, such as perinatal loss support groups (Walther, 2005) and “a lactation consultant to assist mothers who want to breastfeed their infant or donate breast milk at the end of life and to help mothers manage cessation of lactation” (National Association of Neonatal Nurses Board of Directors, 2015). Clinical teams need to take responsibility for knowing if, how, and when to advocate for help that may or may not be medical in nature.
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2018, Avery's Diseases of the Newborn: Tenth EditionSpeaking about life and death in neonatology: How can communication with families be optimized?
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2017, Avery's Diseases of the Newborn, Tenth EditionSedatives and Analgesics Given to Infants in Neonatal Intensive Care Units at the End of Life
2015, Journal of Pediatrics