Neonatal ethics Spokane WA 11/7/18
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Presented at the Neonatal Nursing Conference in Spokane Valley WA on 11/7/2018 at Centerplace Regional Conference Center
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Neonatal ethics Spokane WA 11/7/18
- 1. Ethical Dilemmas in the NICU Andrea Chatburn, DO, MA Medical Director for Ethics, Providence Health Care, Spokane WA Andrea.Chatburn@providence.org
- 3. Objectives • Review historically significant ethics cases informing care of neonates • Introduce Providence model for ethical decision making • Discuss limitations of parental decision making for infants • Differentiate between moral distress and ethical dilemmas • Share and apply new tools for self-care in settings of moral distress
- 6. Common Ethical Dilemmas in the NICU • Definitions and limits of viability • Morbidity and Mortality in ELBW infants • Parental decision making authority • Witholding/Withdrawaling Life Support • Requests for non-beneficial interventions • Refusal of basic or beneficial interventions • Determination of Brain Death; organ and tissue donation • Community views on disability and cost of care
- 7. Baby Doe Laws • 1982 – Indiana • 1983 – New York • “Hotlines” • 1986 - Brown vs. AHA • 1988 – CAPTA Revision
- 8. 1988 CAPTA Revision The term “withholding of medically indicated treatment” means the failure to respond to the infant's life-threatening conditions by providing treatment (including appropriate nutrition, hydration, and medication) which, in the treating physician's (or physicians') reasonable medical judgment, will be most likely to be effective in ameliorating or correcting all such conditions, except that the term does not include the failure to provide treatment (other than appropriate nutrition, hydration, or medication) to an infant when, in the treating physician's (or physicians') reasonable medical judgment any of the following circumstances apply: i) The infant is chronically and irreversibly comatose; ii) The provision of such treatment would merely prolong dying, not be effective in ameliorating or correcting all of the infant's life-threatening conditions, or otherwise be futile in terms of the survival of the infant; or iii) The provision of such treatment would be virtually futile in terms of the survival of the infant and the treatment itself under such circumstances would be inhumane. White, M. The end at the beginning. Ochsner J. 2011;11(4):309-16.
- 9. Best Interest Standard Decision making guided by the best interests standard requires a surrogate to do what, from an objective standpoint, appears to promote a patient's good without reference to the patient's actual or supposed preferences. This does not mean the surrogate must choose the means the practitioner thinks is “best” for promoting the patient's well-being, but only a means reasonably likely to achieve that goal. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. October 1982. Making health care decisions: Http://bioethics.georgetown.edu/pcbe/reports/past_commissions/making_health_care_decisions.pdf
- 10. Medical Beneficence or Implicit Beliefs about Disability? Test your assumptions and biases here: Implicit.Harvard.edu
- 11. A Benevolent Injustice? Barnum, B. Ethical Dilemmas in Newborn Care. Advances in Neonatal Care June 2009, Volume :9 Number 3 , page 132 - 136
- 12. Case: Baby V- First Birthday in NICU • 36 weeks GA • Born to 18 yo mother, 39 yo father • Severe cloacal anomaly, omphalocele, bladder extrophy, urethral extrophy, imperforate anus, severe bilateral hip dysplasia • Breathing on own, desaturated during examination • Parents wanted “everything done” • Placed on a mechanical ventilator to allow for pain management after initial corrective surgery Barnum, B. Ethical Dilemmas in Newborn Care. Advances in Neonatal Care, June 2009, Volume :9 Number 3 , page 132 - 136
- 13. To think therefore I am? I love therefore I am.
- 15. Angry- “this feels wrong” Caregiver detachment Principles conflicting “Everyday Ethics”S p e c t r u m
- 16. Moral Distress: Characteristics • Unable to carry out ethically appropriate action because of constraints (usually institutional) • Manifests as frustration, anger, guilt, anxiety, withdrawal and self- blame • Results from perceived violation of one’s core values and duties • Not same as psychological distress which is an emotional reaction to a situation Epstein & Hamrick, J Clinical Ethics 2009
- 17. Providence Model for Ethics Clinical Integrity Beneficence Autonomy Justice & Non-Maleficence
- 18. The Providence Model Promote: • Honesty in representing right professional practices and delivery of health care • Dependability in delivering care that benefits patients medically • Fairness to patients in their contexts • Accountability to the legitimate interests of others in light of justice Kockler, N. Seeing Ethics Consultations for the First Time: Disclosure Models, Analytic Design, and Ethical Decision-Making. ©2014 –Nicholas J. Kockler
- 19. “Mattering Map” M. Montello, Narrative Ethics, Hastings Center, 2014
- 20. Ethics “Mattering Map” What is going on? Why did this happen? What is the good we are likely to offer? How dependable is it? Who is this person? Who do they trust? What do they hope for? What are the potential harms? Can we reduce them?
- 21. Why map? • We write out a “map” so that we can see anew what we could not see before • We record the curiosities we want to know more about • Mapping helps us feel anew, or feel differently in emotionally charged and value-laden
- 22. The nurturing nature of writing • “Very rarely do you hear anyone say they write things down and feel worse … it helped them see their experience, see what they were living … an act that helps you, preserves you, energizes you in the very doing of it.” -Naomi Shihab Nye, Your Life is a Poem, March 15, 2018
- 23. GRACE •Gather Attention •Recall Intention •Attune to Self and Other •Consider What Will Serve •Engage and End Hallifax, J. Standing at the Edge, 2017, p. 232
Notas del editor
- Trisomy 21 and Tracheoesophageal fistula Born in Indiana Perceptions of disability Obstetrician vs. Pediatrician and Family physician Family decided to forgo surgical repair Died at day 6 of life, before case could be heard before Supreme Court Surgeon General Koop – Baby Doe “hotlines” Brown vs. American Hospital Association 1986 US Supreme Court struck down establishment of hotlines under ADA Infant with spina bifida, microcephaly and hydrocephalus Born to family in Long Island, NY Parents decided against interventions after conflicting medical opinions Hotlines were established encouraging individuals to “call in” if anyone was discussing withholding or withdrawaling medical interventions on an infant. This was challenged by multiple professional orgaizations in Brown vs. AHA and struck down by the US Supreme Court under the Americans with Disabilities Act
- Liberty Swing – Australia Project Implicit Disability ('Disabled - Abled' IAT). This IAT requires the ability to recognize symbols representing abled and disabled individuals.
- There is a little-recognized cohort of NICU patients whose outcomes are the result of a "benevolent injustice" in their healthcare course. Many of these infants are saved by technology; however, they are left both medically fragile and medically dependent, and many of them are required to live in a medical facility. Many of these babies never get to go home with their parents. This emerging cohort of patients may evolve from the difficult ability to prognosticate outcomes for neonates, overtreatment, and acquiescing to parental demands for continued aggressive care. Neonatology is an unpredictable process and one that is never intended to harm, but carries with it the potential of devastating consequences, thus creating a benevolent injustice. Case Study of Benevolent Injustice The following case study is an example of a preterm neonate with multiple congenital anomalies who survived with profound debilitating and neurologic issues. Baby V was born at 36 weeks' gestation to an 18-year-old mother who received little prenatal care and a 39-year-old father. Baby V was born with a severe cloacal anomaly that consisted of an omphalocele, bladder exstrophy, urethral exstrophy, gonad exstrophy, imperforated anus, and severe bilateral hip dysplasia. There were no obvious external sex organs. Baby V was breathing on its own and would only desaturate during examination, likely due to pain. The parents wanted everything done for Baby V. On day of life 1, Baby V was intubated and placed on a mechanical ventilator for pain management and to undergo major corrective surgery for the defects. By examination, surgeons felt Baby V was male, and this was later confirmed by the test for chromosomes. Because of the extreme deformities, the surgeons and family felt it would be easier to assign Baby V the gender of female although she was chromosomally male. Over the course of the next year, in the NICU, Baby V underwent multiple bowel surgeries, central line placements, and diagnostic tests and procedures. She suffered from chronic lung disease because of prolonged intubation and never successfully extubated. She received a tracheostomy for long-term airway security and remained dependent on a ventilator. She was total parental nutrition dependent for over 8 months and eventually underwent a gastrostomy tube placement for long-term feedings. She suffered multiple bouts of fungal and bacterial sepsis, central line infections, respiratory tract infections, and skin breakdown from multiple stoma sites and vesicostomy. During 2 separate, severe, and acute episodes of sepsis, she was placed on high-frequency ventilation, suffered prolonged periods of hypoxia, and was placed on high doses of inotropic drugs to support her blood pressure. Both times, the physicians asked for her to be made a Do Not Resuscitate, but the mother refused-the parents continued to want everything done. Baby V had multiple surgical complications, including feeding intolerance. She suffered from seizures. She was extremely developmentally delayed and minimally interacted with her parents or staff. She continued to survive despite her many setbacks, and she celebrated her first birthday in the NICU. She was, eventually, weaned to a home ventilator, but because of her fragile medical state, she was not able to be cared for at home by her mother, who was trying to finish high school and earn her General Education Development Test. The parents started having relationship difficulties, and both parents began to visit Baby V less and less. At approximately 18 months of age, Baby V was transferred to the PICU. Her NICU length of stay was more than 540 days. After approximately 6 weeks in the PICU, she was transferred to a long-term, subacute care facility where she was managed on her home ventilator. She never exceeded the mental capacity of a 2-year-old. She was deaf from the high doses of ototoxic drugs she received in her lifetime. She never walked, never talked, never ate by mouth, and required 24-hour subacute care. Baby V was readmitted to the hospital 3 to 5 times per year for the next 9 years. She ultimately died during a readmission to the PICU from a severe respiratory tract infection at the age of 10 years. The Benevolent Injustice Cohort "Because of neonatal intensive care, lives of infants are saved and parents are given children who would not have previously survived. But rarely has the underside of this success been examined, specifically when technology is used to save marginally viable infants who are left with severe residual morbidities."11(p269) There has been little research in the literature addressing this cohort of neonates with extremely long hospitalizations and comorbidities, many of whom are never discharged home; instead, like Baby V, they end up "living on the unit."5(p742) There were only 2 published reports found in the literature regarding this special cohort of patients.
- Angry because it threatens your moral integrity Detachment due to having a duty to participate in care plan that you feel is wrong
- Gather attention: G in grace is a reminder for us to pause and give ourselves time to get grounded. On the inhale, we gather our attention. On the exhale, we drop our attention into the body, sensing into a place of stability in th ebody. We might focus our attention on the breath or another area of the body that feels neutral, shuch as the soles of the feet on the floor or the hands as they rest on each other. Or, we can bring our attention to a phrase or an object that feels meaningful or helps us stay present. The R of GRACE is recalling intention- we recall our commitment to act with integrity and respect the integrity of those we encounter. We remember that our intention is to serve and to open our heart to the world. A is for the process of attunement – first to our own physical, emotional, and cognitive experience and then to the experience of others. In the self-attunement process, we bring outr attention to thoughts, emotions and sensations, all of which shape our attitutes and behavior toward others. C is for discerning what is the wise and compassionate path here? What will serve others and provide balance? Do I have biases that are getting in the way? E is to Ethically Engage and Act, if appropriate. Compassionate Action emerges from the field we have created of openness, connection, and discernment. Our action may be as simple as a question or presence. We endeavor to cocreate with the other person a moment that is characterized by mutuality and trust. We look for commonground, then when the time is right we end the interaction so that we can move cleanly to the next moment, person or task.