Presentation on theme: "Barbara Montagnino, MS,RN,CNS Progressive Care Unit"— Presentation transcript:
1 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,CNSProgressive Care Unit
2 ObjectivesName 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 :
4 Case StudyB.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.
5 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 discussedThe parents are encouraged to talk with their family before making a decision.
6 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!”
8 YESMisalignment of goals and expectations between various stakeholdersPresents a dispute, real or potential between two partiesPatient’s family vs. healthcare teamHealthcare team vs. healthcare teamPatient’s family vs. patient’s family
9 Medical Futility Treatment that prolongs suffering Does not improve the patient’s QOLOr fails to achieve a good outcomeRomesburg, Adv Neonatal Care (2003)Treatments which fail to provide a reasonable chance of survivalOr least a minimum QOLWellesley, Paediatr Anaesth (2009)
10 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 /TrainingRegistered NursesN=414Social WorkersN=782TotalN=1,196Basic Preparation178 (43.0%)365 (46.7%)543 (45.4%)Basic and/or advanced preparation212 (51.2%)471 (60.2%)683 (57.1%)Continuing Ed.109 (26.3%)461 (59.0%)570 (47.7%)In-house training118 (28.5%)265 (33.9%)383 ( 32.0%)No ethics training94 (22.7%)59 (7.5%)171 (14.3%)Respondents could indicate more than one source; 19 non-responders
11 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.
12 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?
13 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…
14 Facilitating Ethical and Legal Practice The 4 Box MethodSource: Jonsen,,A. et al. (2002) Clinical ethics. New York, NY: McGraw-HillMedical IndicationsPatient PreferencesQuality of LifeContextual Features
15 Facilitating Ethical and Legal Practice The 4 Box MethodSource: Jonsen,,A. et al. (2002) Clinical ethics. New York, NY: McGraw-HillMedical IndicationsNeurologically devastatedTech DependentLong term sequelaePatient PreferencesUnable to communicatePreviously healthyQOLUnresponsiveNot expected to ▲Daily painful proceduresHigh potential for sufferingContextual Featuressibling(s)? Family supportFamily burden of careMoral distress of HCT
16 If parents choose to escalate artificial life support
17 Escalating artificial life support What are the main arguments for ? parents may have less guilt for not protecting B.J. from his injuryparents do not want to “give up”denial that the child is not going to recoverremoval of support may conflict with cultural/religious beliefs
18 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
19 Moral DistressThe 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)
20 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)
21 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),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?”
22 Extubate and provide comfort care What are the main arguments for? prevents prolonged sufferingno hope of technologies improving QOLallow parents to focus attention on siblingsrelieves parents of “burden of care”
23 Extubate and provide comfort care What are the main arguments against? parents may experience stress if conflicts with their beliefsfamily may receive satisfaction in caring for B.J.family receives 2º gain from having ill childpossible legal charges against aunt
24 Fundamental Ethical Principles AutonomyBeneficenceNon-maleficienceJustice
25 Respect for AutonomyEach person chooses their own actions for themselves:intentionallywith understandingand voluntarily
26 BeneficencePromotion of benefit over burdens“the duty to do good”
27 Nonmaleficence Avoidance of intentional infliction of harm “the duty to do no harm”
28 Justice Equitable distribution of risks and benefits Impartiality , fairness, equal distribution of resources
29 Placement of Tracheostomy and Gastrostomy Trach Team consultCare management evaluationPost-operative educationHome care servicesDischarge home
30 Compassionate Extubation Review patient’s current condition w/family and reason for extubationIdentify family wishes/concernsDiscuss options /suggestions for rituals, memory-making activities/keepsakesDetermine religious/spiritual needs or supports for familyDiscuss parents desired intensity for symptom managementGive 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
31 Debriefing Compassionate Extubation Process Did it preserve the emotional health and well-being of the family ?And the healthcare team?
32 Common Ethical Dilemmas in Caring for Critically Ill Children Resuscitation /prolonged life-supportParental refusal of treatment based on religious /cultural beliefsChemotherapy/experimental therapyTruth-telling♦
33 Cases for DiscussionMount KilimanjaroMoshi, Tanzania 2010
34 Consent for TreatmentTreatment refusal by older minors is less straightforwardDecision to respect a refusal of treatment in older minorsAgeExperience with the treatmentChance that the treatment will workLikely consequences of not getting the treatment
35 Talking about Death with Children who have Severe Malignant Disease Kreicbergs, U. et al.(2004) NEJM,331 (12),Aim: to determine parents feelings on talking or not talking about death with their dying childNone of the parents who talked w/child about death regretted it27% of the parents who did NOT talk w/child about death regretted not having done soParents who sensed their child was aware of his/her imminent death were more likely to regret not having talked about it
36 Resources for dealing with ethical issues Institutional Policy and ProcedureLeadership TeamBioethics CommitteeSpiritual Care DepartmentHuman Resources Department
37 Preventive EthicsGood ethics begins with good communication!
38 What is in the best interest of the child? Can we?Medical questionShould we?Ethical question
39 ReferencesANA Position Statement (2010) Registered Nurses’ Role and Responsibilities in Providing Expert Care and Counseling at the End of LifeElpern EH, et al. Moral distress of staff nurses in a medical intensive care unit. Am J Crit Care (2005)14(6):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-HillMeltzer, LS & Huckabay LM. Critical care nurses’ perceptions of futile care and its effect on burnout. Am J Crit Care (2004)13(3):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),
40 ReferencesPendry ,P. Moral distress: recognizing it to retain nurses. Nurs Econ, (2007) 25(4),Romesburg, TL. Futile care and the neonate, Adv Neonatal Care , (2003),3(5):Sine D, Sumner L., Gracy D. Pediatric extubation: “pulling the tube”. J Palliat. Med. (2001); 4:Swirling, T., Hamann, K., and Kon,A. Home pediatric compassionate extubation: bridging intensive and palliative care. Am J Hosp & Palliat Med.(2006): 23 (3),Wellesley H, et al. Withholding and withdrawing life-sustaining treatment in children. Paediatr Anaesth ,(2009), 19 (10):.
41 ResourcesTCH Policy PC Guidelines on Institutional Policies on the Determination of Medically Inappropriate Interventions (2009)Texas Advance Directives Act (1999)- Texas Health and Safety Code Chapter 166 SectionANA 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)
42 Thank you for your attention. Questions? Contact information