Barbara Montagnino, MS,RN,CNS Progressive Care Unit The 19th Annual CHAT Pediatric Nursing Conference Children with Life-limiting Conditions: Coping with Tough Ethical Issues ****** Barbara Montagnino, MS,RN,CNS Progressive Care Unit

Objectives Name two ethical dilemmas commonly encountered in pediatric settings. List three questions to be addressed in examination of pediatric ethical issues. Identify two examples in your practice area which could cause “moral distress”. At the completion of this session the nurse will be able to :

No conflicts of interest to disclose.

Case Study B.J is a 10 m/o boy admitted to the PICU one month ago after suffering a sustained HIE secondary to suspected NAT while under the care of his aunt. He is neurologically devastated and ventilator-dependent. CPS is involved in the case. Parents retain custody. B.J.’s father works long hours and is rarely at the hospital. B.J. has a 3 –year- old sister. The father and B.J.’s 19 year-old mother, who has just learned she is pregnant with twins, are approached by the healthcare team to discuss B.J.’s plan of care.

What the Parents are told It is highly likely B.J. will remain in a PVS with no hope of ever breathing without ventilator support. For B.J. to leave the PICU and eventually return home he would require placement of a tracheostomy tube and a gastrostomy device. Due to the futility of B.J.’s situation compassionate extubation/comfort care/AND are discussed The parents are encouraged to talk with their family before making a decision.

What the staff says… During change of shift report the day nurse and the evening nurse commiserate on the sadness of this child’s fate. Nurse A comments” Poor B.J., I don’t know why the medical team would even consider offering a trach and GT to his parents. His QOL is poor and he is bound to suffer even more as time goes by. We have all seen these kids…they get bigger, develop contractions and have all kinds of complications. They are always in the hospital. Sometimes to give the families a break. I don’t believe getting a trach is the right thing for this child or this family. ” Nurse B states," I can see your point but it is not right for us (the healthcare team) to take him off of life support!”

Does this situation present an ethical dilemma?

YES Misalignment of goals and expectations between various stakeholders Presents a dispute, real or potential between two parties Patient’s family vs. healthcare team Healthcare team vs. healthcare team Patient’s family vs. patient’s family

Medical Futility Treatment that prolongs suffering Does not improve the patient’s QOL Or fails to achieve a good outcome Romesburg, Adv Neonatal Care (2003) Treatments which fail to provide a reasonable chance of survival Or provide @ least a minimum QOL Wellesley, Paediatr Anaesth (2009)

Ethics Education Comparing RNs and SWs Grady,C. Danis, M. et al Ethics Education Comparing RNs and SWs Grady,C. Danis, M. et al. (2008) Am J Bioethics8(4),4-11. Source of Course Work /Training Registered Nurses N=414 Social Workers N=782 Total N=1,196 Basic Preparation 178 (43.0%) 365 (46.7%) 543 (45.4%) Basic and/or advanced preparation 212 (51.2%) 471 (60.2%) 683 (57.1%) Continuing Ed. 109 (26.3%) 461 (59.0%) 570 (47.7%) In-house training 118 (28.5%) 265 (33.9%) 383 ( 32.0%) No ethics training 94 (22.7%) 59 (7.5%) 171 (14.3%) Respondents could indicate more than one source; 19 non-responders

ANA Position Statement (2010) Registered Nurses’ Roles and Responsibilities in Providing Expert Care and Counseling at the End of Life … discussions of EOL choices before a patient’s death is imminent. …discussions of personal ethical dilemmas that occur when caring for the dying. …academic preparation and CE should prepare the RN to provide comprehensive and compassionate EOL care.

What are the issues in B.J.’s case? Should artificial life support be removed and allow a natural death? Should a tracheostomy and a gastrostomy be done enabling the child to receive long-term artificial life support? What is the child’s expected QOL and prognosis with and without these interventions? How will B.J.’s family cope with a technology-dependent child?

Three questions to ask… For whom are we doing this? Do the burdens of treatment (support) outweigh the benefits? What is in the best interest of the child? Three questions to ask…

Facilitating Ethical and Legal Practice The 4 Box Method Source: Jonsen,,A. et al. (2002) Clinical ethics. New York, NY: McGraw-Hill Medical Indications Patient Preferences Quality of Life Contextual Features

Facilitating Ethical and Legal Practice The 4 Box Method Source: Jonsen,,A. et al. (2002) Clinical ethics. New York, NY: McGraw-Hill Medical Indications Neurologically devastated Tech Dependent Long term sequelae Patient Preferences Unable to communicate Previously healthy QOL Unresponsive Not expected to ▲ Daily painful procedures High potential for suffering Contextual Features sibling(s) ? Family support Family burden of care Moral distress of HCT

If parents choose to escalate artificial life support

Escalating artificial life support What are the main arguments for ? parents may have less guilt for not protecting B.J. from his injury parents do not want to “give up” denial that the child is not going to recover removal of support may conflict with cultural/religious beliefs

Escalating artificial life support What are the main arguments against? prolongs suffering from sequelae of profoundly impaired consciousness, long-term ventilation, immobility, etc. less time/energy/resources to devote to B.J.’s sibling(s) source of “moral distress” among HCP providing medically inappropriate care

Moral Distress The physical or emotional suffering that is experienced when constraints (internal or external) prevent one from following the course of action one believes is right. (P. Pendry, Nurs Econ, 2007)

Critical Care Nursing Alert! At risk for experiencing high levels of moral distress (Elpern, et al. 2005) Frequency of moral distress situations involving futile care significantly related to critical care nurses’ experiencing emotional exhaustion (Melzer & Huckabay,2004) Expert clinical judgment permits early recognition of the futility of providing further care (Hanna, 2004)

The experiences of pediatric nurses caring for children in a persistent vegetative state Montagnino,B.and Ethier,A. (2007)Pediatr Crit Care Med :8(5),440-98. Grave concern about the powerless feeling of being required to continue and escalate what they perceived as medically inappropriate life-support measures in children with PVS “ When they are all broken inside…and the doctors have charted this, yet we trach them and keep them alive, what do we do now?” “ We are basically torturing these kids. How do we know she is not screaming on the inside?”

Extubate and provide comfort care What are the main arguments for? prevents prolonged suffering no hope of technologies improving QOL allow parents to focus attention on siblings relieves parents of “burden of care”

Extubate and provide comfort care What are the main arguments against? parents may experience stress if conflicts with their beliefs family may receive satisfaction in caring for B.J. family receives 2º gain from having ill child possible legal charges against aunt

Fundamental Ethical Principles Autonomy Beneficence Non-maleficience Justice

Respect for Autonomy Each person chooses their own actions for themselves: intentionally with understanding and voluntarily

Beneficence Promotion of benefit over burdens “the duty to do good”

Nonmaleficence Avoidance of intentional infliction of harm “the duty to do no harm”

Justice Equitable distribution of risks and benefits Impartiality , fairness, equal distribution of resources

Placement of Tracheostomy and Gastrostomy Trach Team consult Care management evaluation Post-operative education Home care services Discharge home

Compassionate Extubation Review patient’s current condition w/family and reason for extubation Identify family wishes/concerns Discuss options /suggestions for rituals, memory-making activities/keepsakes Determine religious/spiritual needs or supports for family Discuss parents desired intensity for symptom management Give family scenario about “what to expect” Post-extubation family/other family members’ offered/given privacy with the child as desired. Swirling, T., Hamann, K., & Kon,A. Am J Hosp & Palliat Med.2006

Debriefing Compassionate Extubation Process Did it preserve the emotional health and well-being of the family ? And the healthcare team?

Common Ethical Dilemmas in Caring for Critically Ill Children Resuscitation /prolonged life-support Parental refusal of treatment based on religious /cultural beliefs Chemotherapy/experimental therapy Truth-telling ♦

Cases for Discussion Mount Kilimanjaro Moshi, Tanzania 2010

Consent for Treatment Treatment refusal by older minors is less straightforward Decision to respect a refusal of treatment in older minors Age Experience with the treatment Chance that the treatment will work Likely consequences of not getting the treatment

Talking about Death with Children who have Severe Malignant Disease Kreicbergs, U. et al.(2004) NEJM,331 (12), 1175-86. Aim: to determine parents feelings on talking or not talking about death with their dying child None of the parents who talked w/child about death regretted it 27% of the parents who did NOT talk w/child about death regretted not having done so Parents who sensed their child was aware of his/her imminent death were more likely to regret not having talked about it

Resources for dealing with ethical issues Institutional Policy and Procedure Leadership Team Bioethics Committee Spiritual Care Department Human Resources Department

Preventive Ethics Good ethics begins with good communication!

What is in the best interest of the child? Can we? Medical question Should we? Ethical question

References ANA Position Statement (2010) Registered Nurses’ Role and Responsibilities in Providing Expert Care and Counseling at the End of Life Elpern EH, et al. Moral distress of staff nurses in a medical intensive care unit. Am J Crit Care (2005)14(6):523-530. Grady,C. Danis, M. et al. Does ethics education influence the moral action of practicing nurses and social workers?, Am J Bioethics (2008) 8(4),4-11. Hanna, DR. Moral distress: the state of the science. Res Theory Nurs Prac (2004) 18(1):73-93. Jonsen,,A. et al. (2002) Clinical ethics. New York, NY: McGraw-Hill Meltzer, LS & Huckabay LM. Critical care nurses’ perceptions of futile care and its effect on burnout. Am J Crit Care (2004)13(3):202-208. Montagnino,B. and Ethier,A. The experiences of pediatric nurses caring for children in a persistent vegetative state. Pediatr Crit Care Med(2007)8(5),440-446.

References Pendry ,P. Moral distress: recognizing it to retain nurses. Nurs Econ, (2007) 25(4), 217-221. Romesburg, TL. Futile care and the neonate, Adv Neonatal Care , (2003),3(5): 213-9. Sine D, Sumner L., Gracy D. Pediatric extubation: “pulling the tube”. J Palliat. Med. (2001); 4: 519-24. Swirling, T., Hamann, K., and Kon,A. Home pediatric compassionate extubation: bridging intensive and palliative care. Am J Hosp & Palliat Med.(2006): 23 (3), 224-28. Wellesley H, et al. Withholding and withdrawing life-sustaining treatment in children. Paediatr Anaesth ,(2009), 19 (10):972-78. .

Resources TCH Policy PC118-01 Guidelines on Institutional Policies on the Determination of Medically Inappropriate Interventions (2009) Texas Advance Directives Act (1999)- Texas Health and Safety Code Chapter 166 Section 166.046 ANA Position Statement on Foregoing Nutrition and Hydration (1992) ANA Position Statement Registered Nurses’ Roles and Responsibilities in Providing Expert Care and Counseling at the End of Life (2010) AAP Policy Statement- Palliative Care of Children (2000) AAP Clinical Report – Foregoing Medically Provided Nutrition and Hydration in Children (2009)

Thank you for your attention. Questions? Contact information bamontag@texaschildrens.org bmontagnino@gmail.com