Comfort Care for Dying Babies: A Bioethical Look at Perinatal Palliative Care

The death of a neonate often feels unnatural. Reporter Michelle Beebee (2009) points out that while “widow” and “orphan” convey the loss of a specific relation, there is no word in English that conveys the loss of a child, much les the loss of a newborn. The goal of palliative care is to maximize quality of life while relieving symptoms (Sumner, 2006) and to provide patients with a death that is both humane and compassionate (Walther, 2005).

Similarly, the goad of perinatal palliative care is to help families to make decisions consistent with their personal and religious beliefs, to value the limited time parents have with their child, and to always put the baby’s best interest first (Sumner, 2006).Clinically the neonate is provided with warmth, dignity, human contact, and pain relief (Walther, 2005).While these goals are widely accepted, the execution is controversial.This paper will explore perinatal palliative care through the following true case of Baby Elena and then argue for the treatment of pain in perinatal palliative care.

Baby Elena was prenatally diagnosed with Edwards Syndrome.The parents were told that 50% of these babies don’t survive their first week of life and less than 10% see their first birthday.Elena’s mother said, “We wanted to let life and her [Elena] decide how long she’s here for, but the trick was can we do it and still be healthy and know that she didn’t suffer?”They turned to palliative care to help them both appreciate the time with their daughter while already starting the grieving process (NYT, 2007).

Edwards syndrome can be diagnosed prenatally by amniocentesis or chorionic villus sampling by testing for trisomy (three copies) of chromosome 18.It causes congenital heart disease, kidney problems, and omphalocele.The effects can range from mild to severe and, while some patients have survived into adolescence, 50% of babies die within the first week (Trisomy18.com).

Baby Elena’s parents decided to carry the pregnancy to term and were adament about not wanting her to suffer, so the problem becomes what to do at birth, around which there is a high mortality rate.There are three general options to consider.First, Baby Elena could receive palliative care without any measures to prolong her life.Taken in the extreme, this could mean terminal sedation.The consequences are that Elena would die quickly and without pain, however, her life may have been ended prematurely.Second, she could receive nutrition, oxygen, and pain medication without invasive treatment.This option attempts to balance quality and quantity of life.Third, she could receive aggressive treatment aimed at prolonging life.This ensures Baby Elena lives to her full capacity, however, it may cause her to suffer.

Although Elena’s parents were fully aware that she would be born with Edwards, this is not always the case and when the baby’s critical condition is a surprise, parents are unprepared to make any decisions regarding palliative care and the medical team has not had time to help them acclimate.In this case, many doctors will provide any pain-free treatment to keep the baby alive until the parents are ready to let go (Smith, 2005).Advocates of this response say that this is an extremely important time for the family and how the death occurs will affect the parents for the rest of their lives.Opponents and myself argue that this practice prioritizes the parents’ emotions over the neonate’s right to a peaceful pain-free death and is therefore immoral.

The parents are the surrogate decision makers in the NICU and should be instructed to make their decisions based on the best interests standard, which will ensure the most benefit and the least harm (Smith, 2005).While this seems intuitive, it often seems equally as plausible to consider the care of the whole family in palliative care, for example keeping a neonate alive to allow the parents time to come to peace with imminent death.While this may be kind to the parents, it is immoral because the neonate is the patient and must be the priority.

Healthcare workers and parents often disagree about how to act keeping the neonate’s best interest in mind, which stems from fundamentally different perspectives.Parents view death as the worst outcome and parents of premature infants are most likely to save at all costs.In contrast, healthcare workers view severe disability as the worst outcome (Lam, 2009).

The values held by parents determine what their ultimate treatment choice to be.Parents may consider maximizing the infant’s lifetime, minimizing the infants suffering, the infant’s quality of life, their own psychological health and quality of life, their other children’s best interest, time, and money.Each healthcare worker involved in the case then must consider if they can personally carry out the parents’ wishes or if they need to refer to someone else.

Elena’s parents decided that preventing her from suffering was their first priority and chose the first option of palliative care while providing nutrition, fluids, and pain medication.The team of healthcare workers supported their decision.

The weakness lies in generalizing palliative care based on its defined goals.Palliative care is based on either not wanting to prolong a painful inevitable death or on a quality of life assessment.Quality of life is an extremely subjective phrase, but usually accounts for pain, mental capacity, and physical capacity.The second two considerations reveal a weakness in the generalization because they suggest palliative care when death is not imminent, for example, withdrawal of treatment could be based on the neonate’s future ability to communicate or to be aware of his or her surrounding, which reflects an attitude of discrimination against disabled people (Smith, 2005).

Despite having chosen to palliative care, there are additional difficult ethical issues to be faced, namely, the treatment of pain.Elena’s parents valued their daughter’s comfort above all else, and yet, neonate’s pain is often untreated.The problem is two fold.First, because the neonate cannot demonstrate pain the way that children and adults do, the pain is often unrecognized. This does not negate its gravity; instead it places the responsibility of detecting pain on healthcare workers.Possible methods of recognition include physiological indicators of stress and inferring pain levels from levels reported in children undergoing the same procedures (Matthews, 2008).Second, healthcare workers are often hesitant to treat neonate’s pain because it could lead to an accidental overdose due to difficult dose calculations and respiratory depression, both of which ultimately hasten death.Given doctors fear, it’s surprising that parents report the comfort of their infant is their highest priority, even at the expense of hastening death (Matthews, 2008).I suspect doctors’ hesitate because using medications that expedite death sounds too similar to physician-assisted suicide or even euthanasia.While the administration of opoids can decrease respiratory function and therefore lead to death, alleviating pain can lower mortality and morbidity (Matthews, 2008).This apparently stressful interplay, however, may not be a reality.According to a study of 165 neonates there was no statistical difference in the time of death post ventilator withdrawal between infants who did versus did not receive morphine (Matthews, 2008).This suggests that education around pharmacological treatment of pain is needed in the NICU (neonatal intensive care unit).

Because neither of the potential problems with treating neonatal pain is unavoidable, it’s unethical not to treat neonatal pain.Neonates dying in pain is the result of a lack of education of healthcare workers, which means it’s totally preventable.

Dr. Mary Bunn woks in pediatric palliative care in Blantyre, Malawi and in 2008 published a list of the top ten drugs she uses in her practice.They vary in route of administration including topical, oral, and IV.While she suggests that play, touch, and companionship aid in pain control, she also provides an “Analgesic Ladder” that shows which medications should be used for different levels of pain (Bunn, 2008).Susan Bell, MS, RNC, in her paper “The Pharmacology of Palliative Care”, provides a table of medications that can be used in neonatal palliative care and over ten of these can be given by mouth (Bell, 2004).Both the American Nurses Association and the American Academy of Pediatrics recommends that comfort medications be given to neonates at the end of life (Matthews, 2008).Despite their recommendations, neonates in palliative care are consistently undertreated for pain, which highlights the need for increased education and research to prevent suffering (Moro, 2006).

Advances in medicine have lead to decreases in morbidity and mortality; however, they carry with them their own disadvantages (Lam, 2009).This is particularly true in the NICU and the medical community needs to address the ethical questions that come with the advances.This paper reviewed the possible actions, possible decision makers, and possible priorities in perinatal palliative care through the case of a neonate with Edwards.Despite perinatal palliative care having an established importance, there still isn’t enough research (Sumner, 2006).The main need for research is in the treatment of the pain of the neonate, which will allow more parents to love and grieve for their baby, all while enjoying the too little time they have to hold him or her (Summer, 2006).The strength that this must take is unfathomably heroic: it’s our duty to support them by assuring them that their baby is not suffering.

1. Bell, S. G. (2004). The pharmacology of palliative care. Neonatal Network: NN, 23(6), 61-64.

2. Bunn, M. M. (2008). Top 10 drugs in paediatric palliative care. Malawi Medical Journal : The Journal of Medical Association of Malawi, 20(Catlin, 2002), 133-134.

3.Catlin, A. (2002). Creation of a neonatal end-of-life palliative care protocol. Journal of Perinatology : Official Journal of the California Perinatal Association, 22(Sumner, 2006), 184-195.

4.Lam, H. S. (2009). Attitudes toward neonatal intensive care treatment of preterm infants with a high risk of developing long-term disabilities. Pediatrics, 123(6), 1501-1508.

5.Matthews, A. L. (2008). Administration of comfort medication at end of life in neonates: Effects of weight. Neonatal Network: NN, 27(Catlin, 2002), 223-227.

6.Michelle Beebee. (2009, Dec 26, 2009). Life's end. San Jose Mercury News.

7.Moro, T., Kavanaugh, K, Okuno-Jones, S, VanKleef, J.Neonatal end-of-life care:A review of the research literature.Journal of perinatal neonatal nursing, 20(3), 262-273.

8.Perinatal hospice care. (2007).[Video/DVD] New York Times (NYT). http://video.nytimes.com/video/2007/02/08/health/1194817113313/perinatal-hospice-care.html

9.Racine, E. (2009). Ethics in neonatal neurology: When is enough, enough? Pediatric Neurology, 40(Sumner, 2006), 147-155.

10.Seri, I. (2008). Limits of viability: Definition of the gray zone. Journal of Perinatology: Official Journal of the California Perinatal Association, 28 Suppl 1, S4-S8.

11.Singh, J. (2004). End-of-life after birth: Death and dying in a neonatal intensive care unit. Pediatrics, 114(6), 1620-1626.

12.Smith, L. (2005). The ethics of neonatal care for the extremely preterm infant. Journal of Neonatal Nursing, 11(Lam, 2009), 33-37.

13.Sumner, L. H. (2006). Extending palliative care into pregnancy and the immediate newborn period: State of the practice of perinatal palliative care. The Journal of Perinatal & Neonatal Nursing, 20(Lam, 2009), 113-116.

14.Walther, F. J. (2005). Withholding treatment, withdrawing treatment, and palliative care in the neonatal intensive care unit. Early Human Development, 81(Bell, 2004), 965-972.

15.“What is trisomy 18?”Trisomy 18.Web 5 April 2011. http://www.trisomy18.org.