DQ 8-1

DQ 8-1 responses

1.

“Ethical principles are universal rules of conduct, derived from ethical theories that provide a practical basis for identifying what kinds of actions, intentions and motives are valued” (Pozgar, 2016, p.39). Four ethical principles to consider when reviewing the case of this patient who is in what appears to be an irreversible coma are justice, nonmaleficence, autonomy and beneficence. “Justice is the obligation to be fair in the distribution of benefits and risks” (Pozgar, 2016, p.41). The providers in this case need to be fair to the unborn patient and the mother. She is going through so many emotions right now as what was supposed to joyous has just turned into a nightmare. According to Foreman, (1999), there have been rare cases of children born with anencephaly who have lived past the age of one and one documented case where a child lived to the age of 4. Providing stats to the mom such as this may help her understand that chances seem grim.“Nonmaleficence is an ethical principle that requires caregivers avoid causing patients harm” (Pozgar, 2016, p.40). The providers have to look at this case with two different patients. They need to consider the child and mother and what their needs will be. The mom is going to deliver a baby who most likely will not live very long and she is struggling with this. The physicians won’t technically cause physical harm to the mom or the baby whether they do anything or not. “The principle of autonomy involves recognizing the right of a person to make one’s own decisions” (Pozgar, 2016, p.40). In this case, the mom would be making the decisions as we are talking about an unborn child who will be born without a brain. The mom is in shock and doesn't want to give up on her child. However, she needs to understand the full meaning of anencephaly and that it means her child is going to be born without the cerebral cortex of the brain. The cerebral cortex controls functions such as consciousness, memories, emotions and purposive actions (Foreman, 1999).“Beneficence describes the principle of doing good, demonstrating kindness, showing compassion, and helping others” (Pozgar, 2016, p.40). The physicians and hospital believe they are doing the right thing for the unborn child by trying to get guardianship of the baby so that they can let the baby’s body guide itself rather than prolonging the inevitable.

This is a tough case. I can’t imagine being so excited about becoming a mom, only to find out that I might only get to see my baby for a few days, if he is even born alive as many are born still born. If I were called in as an ethical consult, I would do my best to provide statistical information to the parents to let them know that there are rare cases of children living past a week of age and incurring an astronomical amount of debt to prolong the inevitable is something they need to consider.

Foreman, M.W. (1999). Christianity & bioethics: Confronting clinical issues. Joplin, Missouri: College Press Publishing Company 

Pozgar, G.D. (2016). Legal aspects of health care administration. Burlington, MA: Jones & Bartlett Learning.

2.

First and foremost, this is a very heartbreaking circumstance that would require a very sensitive medical team to handle the case with this family. What I mean by sensitive is that the medical team would have to be not too harsh but firm in their opinions and care as the family has a very strong opposing opinion than the hospital. This is the main ethical issue that I see, that the family of the baby is entitled to their opinion and request of medical care but it is a waste of resources for the hospital. The family could view the hospital as being cruel and killing their baby if they do not provide extensive care, while the hospital could view the family has prolonging death and suffering of the baby with the requested extensive care. Many components play into the issues at hand here, as patient death is a serious matter to both hospitals’ and patients'. “Is end-of-life care a matter of personal values, economics, public policy, or a looming public health crisis? Actually, it is all of these,” (Morhaim & Pollack, 2013). Ethically, we want to preserve the family’s personal values but also care for the baby as needed rather than provide unnecessary care as death is undeniable.

The principles of autonomy, beneficence, nonmalfeasance and justice manifest themselves in a very short period, as the baby’s life expectancy is only that of a few days. The family is seeking their own course of action and the hospital has another immediately after birth. The family has the right to make their own decisions without the influence of the hospital however the hospital is trying to protect the baby by not prolonging a terminal diagnosis. By the hospital seeking court advice, the hospital is seeking justice for their actions as they cannot deliver unnecessary medical care without a direct order. The hospital is not denying care, they are however denying the use of extensive tools that will not benefit the baby’s life and by doing so they still have the child’s best interest in mind given their current diagnosis.

It would be very hard as an ethical consultant to discuss the rate of death with the family of the baby however, I would attempt to present evidence and facts that backs up the hospital’s point of view. With such a small number of babies even living longer than six days, the chance of survival is nearly impossible. A study by the HRF shows how impossible survival will be. “The study essentially found that only a small number of babies affected with anencephaly died before birth, which was about 7 percent in the study. The actual numbers may vary, based on the amount of anencephaly cases out there. From the study, only 5 percent of the babies lived six or more days. Despite that, babies born with anencephaly do have a lower than expected life expectancy, due to the nature of the disorder,” (HRF, 2019). Presenting evidence to the family may do little good as they are generally driven by their religion. Because I want to respect the family as much as possible I do not want to impose such a strong recommendation that would severely offend them. Many insurance plans do not cover instances that are not urgent or medically necessary. If the hospital is stating prolonged care is not medically necessary, the family may be charged significant out of pocket costs. Involving this information into my discussions may help aid in the presentation of facts rather than opinions. With life expectancy and financial evidence, I would recommend maintenance care until the baby passes away. I would however offer the family religious support and any comforting measures we can provide.

References

Health Research Funding (HRF). (2014, March 26). Anencephaly Life Expectancy. Retrieved from https://healthresearchfunding.org/anencephaly-life-expectancy/

Morhaim, D. K., & Pollack, K. M. (2013). End-of-Life Care Issues: A Personal, Economic, Public Policy, and Public Health Crisis. American Journal of Public Health, 103(6), e8–e10. https://doi-org.lopes.idm.oclc.org/10.2105/AJPH.2013.301316

3.

Newborns born with anencephaly are not viable and it is not a treatable condition, therefore classified as a lethal neural tube defect (Machado, Martinez & Barini, 2012). Because of the lack of a functioning cerebrum, they are incapable of consciousness or experiencing pain. This would be one of the more difficult cases to deal with because the mother and unborn child do have the same rights, regardless of their condition, and should be provided comfort and palliative care that is more appropriate for someone who is dying. I would want to make sure the mother understood that even though her religious beliefs and her minister have given her the hope of a miracle, scientifically speaking her baby life is not viable and should not be further disturbed by using extraordinary means to prolong it.

Applying the principles of autonomy, beneficence, nonmalfeasance, and justice would be to recognize the mothers right to autonomy (the mother is the acting healthcare agent) and has the right to make their own decisions. Legally an individual has the right to make their own decisions regarding their health care and what is in their best interest. The principle of beneficence is doing good by showing kindness and compassion for others, showing beneficence is to outweigh the benefits to the risks and acknowledging different cultural or religious beliefs and values of each patient. Sometimes what someone believes to be good could actually be harmful to a patient (Pozgar & Santucci, 2016) and it would be important to communicate that using extraordinary means to prolong life could be more harmful and that the more compassionate thing to do would be to provide her baby comfort instead which also falls under the principle of nonmaleficence, avoiding harm to a patient. Justice is the requirement and commitment to fairly distribute both benefits and risks and that everyone is treated fairly and similarly under same circumstances (Pozgar & Santucci, 2016).

There was a case involving a hospital in a suburb of Virginia where they appealed a Federal District Court's ruling that it must continue to provide life-sustaining treatment for a baby born there 11 months ago with anencephaly. Similarly, the mother in this case also acted out of a "firm Christian faith that all life should be protected" (Greenhouse, 1993) and insisted that everything be done to keep the baby alive. The baby was being cared for in a nursing home but because of periodic respiratory emergencies, it required readmission to the hospital's pediatric intensive care unit and the support of a ventilator to breathe. The mother refused the recommendations of physicians and the appointed board of the hospital's ethics committee of no further treatment be taken. Unsure of any legal liability under Federal law to override the mother's wishes, the hospital took the case to Federal District Court asking for “a declaration that it would not be violating any of several Federal laws governing either hospital admissions or discrimination against the handicapped if it refused to provide treatment the next time the baby needed it.” In addition, the American Academy of Pediatrics filed a brief that supported the hospital, on the grounds “that life-sustaining treatment for an anencephalic baby was medically inappropriate.” (Greenhouse, 1993) However, the Federal District Judge ruled that if the hospital refused to treat the baby's next respiratory crisis it would violate three Federal laws as well as the mother's constitutional right under the 14th Amendment's due process clause to "bring up children" in the way she thinks best (Greenhouse, 1993).

 

 

Greenhouse, L. (1993). Hospital Appeals Ruling on Treating Baby Born With Most of Brain Gone. Retrieved from https://www.nytimes.com/1993/09/24/us/hospital-appeals-ruling-on-treating-baby-born-with-most-of-brain-gone.html

Machado, I. N., Martinez, S. D., & Barini, R. (2012). Anencephaly: do the pregnancy and maternal characteristics impact the pregnancy outcome?. ISRN obstetrics and gynecology, 2012, 127490. doi:10.5402/2012/127490

Pozgar, G.D. & Santucci, N.M. (2016). Legal Aspects of Health Care Administration (12th ed.). Burlington, MA: Jones & Bartlett Learning.