Elsevier

Seminars in Perinatology

Volume 38, Issue 1, February 2014, Pages 38-46
Seminars in Perinatology

Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology

https://doi.org/10.1053/j.semperi.2013.07.007Get rights and content

Abstract

The nature and content of the conversations between the healthcare team and the parents concerning withholding or withdrawing of life-sustaining interventions for neonates vary greatly. These depend upon the status of the infant; for some neonates, death may be imminent, while other infants may be relatively stable, yet with a potential risk for surviving with severe disability. Healthcare providers also need to communicate with prospective parents before the birth of premature infants or neonates with uncertain outcomes. Many authors recommend that parents of fragile neonates receive detailed information about the potential outcomes of their children and the choices they have provided in an unbiased and empathetic manner. However, the exact manner this is to be achieved in clinical practice remains unclear.

Parents and healthcare providers may have different values regarding the provision of life-sustaining interventions. However, parents base their decisions on many factors, not just probabilities. The role of emotions, regret, hope, quality of life, resilience, and relationships is rarely discussed. End-of-life discussions with parents should be individualized and personalized. This article suggests ways to personalize these conversations. The mnemonic “SOBPIE” may help providers have fruitful discussions:

(1) What is the Situation? Is the baby imminently dying? Should withholding or withdrawing life-sustaining interventions be considered? (2) Opinions and options: personal biases of healthcare professionals and alternatives for patients. (3) Basic human interactions. (4) Parents: their story, their concerns, their needs, and their goals. (5) Information: meeting parental informational needs and providing balanced information. (6) Emotions: relational aspects of decision making which include the following: emotions, social supports, coping with uncertainty, adaptation, and resilience.

In this paper, we consider some aspects of this complex process.

Introduction

In this article, we suggest ways to personalize conversations concerning withholding or withdrawing life-sustaining interventions for infants born at periviable gestations and other neonates with life threatening conditions. We recommend that the mnemonic “SOBPIE” may help the healthcare providers to have fruitful discussions with families with compassion and respect, and help the families to arrive at satisfying decisions.

The elements of the mnemonic SOBPIE are as follows. The first element is the situation, or whether or not the infant is terminally ill with little chance for survival; the second is the opinions and options, which are the personal biases of the healthcare provider and potential options they can offer the parents; the third is the basic human interactions; the fourth is a consideration for the parents’ personal stories, concerns, needs, and goals; the fifth element, information, is the process of meeting the parents’ need for information, as well as providing a balanced set of information; and the sixth element pertains to emotions, which specifically concerns that one should be sensitive to the emotional and relational aspects of decision making, parents' social support, their ability to cope with uncertainty, their adaptation to the inevitable, and their resilience. These can be considered with the following examples.

Jessie: Mrs Garnier is 23 weeks’ pregnant. The Garniers already have a name for their unborn child. They wish to call her Jessie. Mrs Garnier has severe preeclampsia and will probably deliver in the next few days.

Coralie: Coralie was born at 24 weeks’ gestational age. She is now 6 weeks old. She had a relatively uneventful course until she developed sepsis 3 days ago. Since then, she has deteriorated rapidly and is now in terminal shock: she has not passed urine for the past 2 days and her blood pressure is unmeasurable, despite maximal therapy. It has become clear that Coralie will not survive.

Adrian: Adrian was born at 30 weeks of gestational age, and was stable until he developed necrotising enterocolitis (NEC) and sepsis at 3 weeks of age. At surgery, a large segment of the intestine was resected, and later he required another surgery to relieve intestinal strictures. He has had 2 sepsis episodes. He is now 38 weeks’ post-menstrual age, and has short-gut syndrome, in addition to and severe bronchopulmonary dysplasia (BPD). Today he developed another perforation of his intestine today that requires an urgent surgical intervention. But, he is physiologically unstable, and would be a high anesthetic and surgical risk for dying; furthermore, even if he survives, he is likely to be left with significant long-term disabilities. Many healthcare providers would consider that another surgery may harm Adrian more than it may benefit him.

Section snippets

Parents are different: A need for personalized care

These 3 stories are not rare in modern neonatal intensive care units (NICUs). Parents are unprepared for these situations and each react differently in these difficult moments. Some parents want a lot of scientific information; others do not find it helpful.1 Parents interpret and evaluate information in the context of their own experience and of their baby’s condition. Parents decide with their brains, assimilating data and information, but also with their hearts, handling their emotions and

What is the Situation, and how should communication about life-sustaining intervention take place with the family?

Survival after intensive care and life-sustaining intervention can be either with or without disability; if death occurs it may be early or after several weeks in the NICU. In some cases such as the example of Coralie, a baby quickly deteriorates and parents have to rapidly be informed that their baby is dying. In other cases, when babies deteriorate gradually, death may not be imminent. Whenever there is a critical situation in a neonatal patient, healthcare providers should ask themselves

Words are important

We have recently investigated what words parents of children with life-limiting conditions found hurtful or offensive.11 Parents said that the following terms should be avoided: “doing everything,” “nothing we can do,” “no hope,” “lethal,” “incompatible with life,” “futile,” “vegetable,” “this child will cause harm to (you, your kids, your job, your finances, and your couple),” “you can have another one,” and “we do not take these kids in our NICU.” Parents particularly disliked healthcare

When the child is imminently dying

When a child is dying and cannot be cured, there is still “something we can do.” We can guarantee Coralie’s parents we will do everything in our power so that Coralie dies without pain. We will support them to plan the death of their child. When babies like Coralie reach the end of their lives, it is important to not give unrealistic hopes to parents, such as that the third super antibiotic may work. This wastes precious moments Coralie’s parents may want to share engaging in moments that will

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