Decision making in neonatal end-of-life scenarios in low-income settings¹

Abstract

The challenge of decision making in end-of-life scenarios is exacerbated when the patient is a newborn and in a low-income setting. The principle of proportionate care is a helpful guide but needs to be applied. The complex interplay of benefit, burden, and cost of various treatments all need to be considered. In patients with severe neonatal encephalopathy, prognosis can be hard to determine, and a team approach to decision making can help. In low-income settings, or where there are limited resources, the ideal care needs to be incarnated in the real context. Issues of social justice also arise as finite resources need to be used prudently.

Summary: Decisions regarding medical care become difficult when the patient is a seriously ill newborn baby. In the developing world, scarce medical facilities and minimal economic resources also limit possible treatment options. The Catholic Church offers practical ethical principles which can help the medical team and family to strive to do what is morally best in these difficult situations.

Keywords:

• Newborn
• Neonatal encephalopathy
• Decision making
• Proportionate means
• Social justice

Notes

1. A shorter version of this paper was delivered by the author at the 3rd international convention of the Philippine Society of Newborn Medicine, “Cutting Edge Neonatology: Applications in the Developing World,” February 1–3, 2017, in Manila, Philippines.

2. The Groningen Protocol, reported in the New England Journal of Medicine, chillingly states the various conditions required to actively end the life of a suffering newborn. While such a protocol would clearly contravene the doctor’s principle of “do no [further] harm,” the authors do recognize that “discussions regarding the initiation and continuation of treatment in newborns with serious medical conditions are one of the most difficult aspects of pediatric practice” (Verhagen and Sauer 2005, 959). Presenting the position paper of the American College of Pediatricians, Vizcarrondo roundly critiques the Groningen Protocol stating, “Taking the suffering person’s life is not the solution to the pain and suffering that are part of the dying process. The taking of innocent life is never a moral act. Neonatal euthanasia is not ethically permissible” (Vizcarrondo 2014, 392).

3. Thomson translates Aristotle here as “Now the supreme good appears such only to the good man, for vice gives a twist to our minds, making us hold false opinions about the principles of ethics” (Aristotle, trans. By Thomson 1953, 167–8).

4. My translation, from the Italian text “Chi niega che tutti i casi si hanno da risolvere coi principi? Ma qui sta la difficoltà: in applicare a’ casi particolari i principi che loro convengono.”

5. I have found the mnemonic “BBC” helpful to explain the main criteria of the principle of proportionate means when speaking to doctors and healthcare workers.

6. A plethora of literature exists in pediatric journals on the use of therapeutic hypothermia for hypoxic-ischemic encephalopathy. For low-income settings, the work of Shankaran (such as Pauliah et al. 2013), Galvao (Galvao et al. 2013), and Montaldo (Montaldo et al. 2015) is helpful. One challenge faced by doctors in poor countries is that to institute therapeutic hypothermia, prior blood-gas analysis is essential. However, blood-gas analysis machines are often scarce in low-income settings. In cases of neonatal hypoxic-ischemic encephalopathy, the gold standard care in a U.S. context for severely affected infants might consist of “mechanical ventilation, anticonvulsants, antibiotics, corticosteroids and pressor medications for blood pressure support, and IV fluids. Hypothermia for 72 hours (whole body cooling to ~93 degrees Fahrenheit) is now standard of care in the United States. In the U.S., knowing the extent of brain damage and prognosticating about the associated outcomes require having access to MRI scanners to delineate the extent and severity of the brain damage. Sometimes the severely affected never recover the ability to be normal and need treatments like tracheostomy and gastric tube placement.” Dr Tom Bender, Division of Medicine Neonatal-Perinatal Medicine, Department of Pediatrics, Saint Louis University School of Medicine, St. Louis, Missouri, USA. Email correspondence with author, January 12, 2016.

7. O’Rourke asks “Are two criteria used when evaluating medical therapy, or are benefit and burden to be combined?” (O’Rourke 2005, 547). Perhaps in low-income settings we have to ask “Are three criteria used when evaluating medical therapy, or are benefit, burden and cost to be combined?”

8. Marcussen notes that the quality of life of a newborn is not easy to assess. He writes “Judgments of well-being in cases of selective nontreatment are often made on the basis of how parents measure what their sense of well-being would be in that circumstance, based on their development and past experiences. The development of the child would be a completely separate and different experience, and the child’s experience of overall well-being would likely be different than that of the parents, should their parents ever find themselves in similar circumstances.” (Marcussen 2014, 3). This may also be of relevance in regard to the challenge of trying to assess future burdens.

9. The problem of cost is not often considered in many moral or theological reflections, especially when the reflection is done in a first-world setting. In low-income settings, and especially when the state funded healthcare system is inadequate, people do not even go to the hospital in the first place. If they do go, their treatment is usually sub-optimal as they are unable to afford medical items, such as a one-unit blood transfusion, which in the first world can be taken for granted.

10. In the private hospital setting in Manila, ventilation and full support of a sick neonate is $1000 per day. For an insightful video about the effects of poverty on neonatal health care as well as a beautiful testimony of how a Catholic doctor can respond, see the account of Dr Enrique M. Ostrea Jr., M.D., Professor of Pediatrics, Wayne State University, at http://www.youtube.com/watch?v=uugTQ0wZWJA.

11. There are no unified criteria worldwide for brain death (Wahlster et al. 2015).

12. In low-income settings, families may run out of funds and have to discontinue the life sustaining treatment of their child. Occasional reports exist of attending doctors being hesitant to withdraw the endotracheal (ET) tube as they fear litigation and that they are “committing euthanasia.” Instead they ask the family to withdraw the ET tube. This practice is to be strongly discouraged and doctors should assume responsibility for their patients.

13. Unfortunately, a priest with knowledge of end-of-life moral issues in the pediatric setting is not always available. In some countries, there are Catholic moral bodies that offer a telephone service for ethical consultation. It would be a genuine act of Christian charity if they could also make their services more accessible to those working in low-income settings.

14. O’Rourke notes, “In order to justify forgoing life support, the burden must be judged to be excessive. Determining an excessive burden is often a difficult process. All medical care is a burden in one sense. But an excessive burden makes striving for the continuation of life, or an important good of life, a moral impossibility - or at least very difficult” (O’Rourke 2005, 545–6).

15. Dr. Mackie Quiazon, a former pediatric resident at a government hospital in Manila. Email correspondence with author, March 1, 2016.

Additional information

Notes on contributors

James McTavish

Fr. James McTavish, M.D., F.M.V.D., is currently the Branch Responsible (Provincial) of the Verbum Dei male missionaries in the Philippines. He may be contacted at [email protected].