References 1 Committee On Hospital C, Institute For P, Family Centered C Patient and family centered care and the pediatrician’s role Pediat rics 2012;129(2) 394 404 2 Merk L, Merk R A parents’ perspe[.]
e1 References Committee On Hospital C, Institute For P, Family-Centered C Patient- and family-centered care and the pediatrician’s role Pediatrics 2012;129(2):394-404 Merk L, Merk R A parents’ perspective on the pediatric intensive care unit: our family’s journey Pediatr Clin North Am 2013;60(3): 773-780 Atkins E, Colville G, John M A ‘biopsychosocial’ model for recovery: a grounded theory study of families’ journeys after a paediatric intensive care admission Intensive Crit Care Nurs 2012;28(3):133140 Colville G, Darkins J, Hesketh J, Bennett V, Alcock J, Noyes J The impact on parents of a child’s admission to intensive care: integration of qualitative findings from a cross-sectional study Intensive Crit Care Nurs 2009;25(2):72-79 Doorenbos A, Lindhorst T, Starks H, Aisenberg E, Curtis JR, Hays R Palliative care in the pediatric ICU: challenges and opportunities for family-centered practice J Soc Work End Life Palliat Care 2012;8(4):297-315 Nelson LP, Gold JI Posttraumatic stress disorder in children and their parents following admission to the pediatric intensive care unit: a review Pediatr Crit Care Med 2012;13(3):338-347 Shudy M, de Almeida ML, Ly S, et al Impact of pediatric critical illness and injury on families: a systematic literature review Pediatrics 2006;118(suppl 3):S203-218 Just AC Parent Participation in care: bridging the gap in the pediatric ICU Newborn Infant Nurs Rev 2005;5(4):179-187 Hill C, Knafl KA, Santacroce SJ Family-centered care from the perspective of parents of children cared for in a pediatric intensive care unit: an integrative review J Pediatr Nurs 2017;S08825963(17):30531-30536 10 Institute for Patient- and Family-Centered Care About PFCC http://www.ipfcc.org/about/pfcc.html Accessed 04/09/2019 11 Frazier ARN, Frazier HRN, Warren NAPRN A discussion of familycentered care within the pediatric intensive care unit Crit Care Nurs Q 2010;33(1):82-86 12 Kuo DZ, Houtrow AJ, Arango P, Kuhlthau KA, Simmons JM, Neff JM Family-centered care: current applications and future directions in pediatric health care Matern Child Health J 2012; 16(2):297-305 13 Guidelines for Pediatric Intensive Care Units Pediatrics 1983; 72(3):364-372 14 Meert KL, Clark J, Eggly S Family-centered care in the pediatric intensive care unit Pediatr Clin North Am 2013;60(3):761-772 15 Coyne I, Cowley S Challenging the philosophy of partnership with parents: a grounded theory study Int J Nurs Stud 2007;44(6):893904 16 Foster MJ, Whitehead L, Maybee P, Cullens V The parents’, hospitalized child’s, and health care providers’ perceptions and experiences of family centered care within a pediatric critical care setting: a metasynthesis of qualitative research J Fam Nurs 2013;19(4):431-468 17 Latour JM, van Goudoever JB, Schuurman BE, et al A qualitative study exploring the experiences of parents of children admitted to seven Dutch pediatric intensive care units Intensive Care Med 2011;37(2):319-325 18 Wong P, Liamputtong P, Koch S, Rawson H Families’ experiences of their interactions with staff in an Australian intensive care unit (ICU): a qualitative study Intensive Crit Care Nurs 2015;31(1):51-63 19 Juarez JA, Marvel K, Brezinski KL, Glazner C, Towbin MM, Lawton S Bridging the gap: a curriculum to teach residents cultural humility Fam Med 2006;38(2):97-102 20 Feudtner C Collaborative communication in pediatric palliative care: a foundation for problem-solving and decision-making Pediatr Clin North Am 2007;54(5):583-607, ix 21 Beck SA, Weis J, Greisen G, Andersen M, Zoffmann V Room for family-centered care – a qualitative evaluation of a neonatal intensive care unit remodeling project J Neonatal Nurs 2009;15(3):88-99 22 Macdonald ME, Liben S, Carnevale FA, Cohen SR An office or a bedroom? Challenges for family-centered care in the pediatric intensive care unit J Child Health Care 2012;16(3):237-249 23 Jones BL, Contro N, Koch KD The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring Pediatrics 2014;133(suppl 1):S8-15 24 Carroll DL The effect of intensive care unit environments on nurse perceptions of family presence during resuscitation and invasive procedures Dimens Crit Care Nurs 2014;33(1):34-39 25 Dingeman RS, Mitchell EA, Meyer EC, Curley MA Parent presence during complex invasive procedures and cardiopulmonary resuscitation: a systematic review of the literature Pediatrics 2007;120(4):842854 26 Curley MA, Meyer EC, Scoppettuolo LA, et al Parent presence during invasive procedures and resuscitation: evaluating a clinical practice change Am J Respir Crit Care Med 2012;186(11):11331139 27 McAlvin SS, Carew-Lyons A Family presence during resuscitation and invasive procedures in pediatric critical care: a systematic review Am J Crit Care 2014;23(6):477-484; quiz 485 28 Sanders Jr RC, Nett ST, Davis KF, et al Family presence during pediatric tracheal intubations JAMA Pediatr 2016;170(3):e154627 29 Berube KM, Fothergill-Bourbonnais F, Thomas M, Moreau D Parents’ experience of the transition with their child from a pediatric intensive care unit (PICU) to the hospital ward: searching for comfort across transitions J Pediatr Nurs 2014;29(6):586-595 30 Davis R A small kindness J Hosp Med 2010;5(9):569-570 31 Kean S A Framework for a Physician-parent follow-up meeting after a child’s death in a PICU and why this family-centered care approach should interest us all Crit Care Med 2014;42(1):214-216 32 Meert KL, Eggly S, Berg RA, et al Feasibility and perceived benefits of a framework for physician-parent follow-up meetings after a child’s death in the PICU Crit Care Med 2014;42(1):148-157 33 Walter JK, Benneyworth BD, Housey M, Davis MM The factors associated with high-quality communication for critically ill children Pediatrics 2013;131(suppl 1):S90-95 34 de Vos MA, Bos AP, Plotz FB, et al Talking with parents about endof-life decisions for their children Pediatrics 2015;135(2):e465476 35 Meert KL, Eggly S, Pollack M, et al Parents’ perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit Pediatr Crit Care Med 2008;9(1):2-7 36 Greenway TL, Rosenthal MS, Murtha TD, Kandil SB, Talento DL, Couloures KG Barriers to Communication in a PICU: a qualitative investigation of family and provider perceptions Pediatr Crit Care Med 2019;20(9):e415-e422 37 Orioles A, Miller VA, Kersun LS, Ingram M, Morrison WE “To be a phenomenal doctor you have to be the whole package”: physicians’ interpersonal behaviors during difficult conversations in pediatrics J Palliat Med 2013;16(8):929-933 38 October TW, Dizon ZB, Roter DL Is it my turn to speak? An analysis of the dialogue in the family-physician intensive care unit conference Patient Educ Couns 2018;101(4):647-652 39 October TW, Hinds PS, Wang J, Dizon ZB, Cheng YI, Roter DL Parent satisfaction with communication is associated with physician’s patient-centered communication patterns during family conferences Pediatr Crit Care Med 2016;17(6):490-497 40 Curtis JR, White DB Practical guidance for evidence-based ICU family conferences Chest 2008;134(4):835-843 41 Lautrette A, Darmon M, Megarbane B, et al A communication strategy and brochure for relatives of patients dying in the ICU N Engl J Med 2007;356(5):469-478 e2 42 Davidson JE, Aslakson RA, Long AC, et al Guidelines for familycentered care in the neonatal, pediatric, and adult ICU Crit Care Med 2017;45(1):103-128 43 McPherson G, Jefferson R, Kissoon N, Kwong L, Rasmussen K Toward the inclusion of parents on pediatric critical care unit rounds Pediatr Crit Care Med 2011;12(6):e255-261 44 Drago MJ, Aronson PL, Madrigal V, Yau J, Morrison W Are family characteristics associated with attendance at family centered rounds in the PICU? Pediatr Crit Care Med 2013;14(2):e93-97 45 Ingram TC, Kamat P, Coopersmith CM, Vats A Intensivist perceptions of family-centered rounds and its impact on physician comfort, staff involvement, teaching, and efficiency J Crit Care 2014;29(6):915-918 46 Walker-Vischer L, Hill C, Mendez SS The experience of Latino parents of hospitalized children during family-centered rounds J Nurs Adm 2015;45(3):152-157 47 Davidson JE Family presence on rounds in neonatal, pediatric, and adult intensive care units Ann Am Thorac Soc 2013;10(2):152-156 48 Gupta PR, Perkins RS, Hascall RL, Shelak CF, Demirel S, Buchholz MT The effect of family presence on rounding duration in the PICU Hosp Pediatr 2017;7(2):103-107 49 McDonagh JR, Elliott TB, Engelberg RA, et al Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction Crit Care Med 2004;32(7):1484-1488 50 Scheunemann LP, McDevitt M, Carson SS, Hanson LC Randomized, controlled trials of interventions to improve communication in intensive care: a systematic review Chest 2011;139(3):543-554 51 Majdalani MN, Doumit MA, Rahi AC The lived experience of parents of children admitted to the pediatric intensive care unit in Lebanon Int J Nurs Stud 2014;51(2):217-225 52 Ames KE, Rennick JE, Baillargeon S A qualitative interpretive study exploring parents’ perception of the parental role in the paediatric intensive care unit Intensive Crit Care Nurs 2011;27(3): 143-150 53 Baird J, Davies B, Hinds PS, Baggott C, Rehm RS What impact hospital and unit-based rules have upon patient and family-centered care in the pediatric intensive care unit? J Pediatr Nurs 2015;30(1):133-142 54 Quill TE, Holloway RG Evidence, preferences, recommendations-finding the right balance in patient care N Engl J Med 2012; 366(18):1653-1655 55 McGraw SA, Truog RD, Solomon MZ, Cohen-Bearak A, Sellers DE, Meyer EC “I was able to still be her mom” parenting at end of life in the pediatric intensive care unit Pediatr Crit Care Med 2012;13(6):e350-356 56 October TW, Fisher KR, Feudtner C, Hinds PS The parent perspective: “being a good parent” when making critical decisions in the PICU Pediatr Crit Care Med 2014;15(4):291-298 57 Butler AE, Hall H, Willetts G, Copnell B Family experience and PICU death: a meta-synthesis Pediatrics 2015;136(4):e961973 58 Hendrickson KC Morbidity, mortality, and parental grief: a review of the literature on the relationship between the death of a child and the subsequent health of parents Palliat Support Care 2009; 7(1):109-119 59 Rennick JE, Childerhose JE Redefining success in the PICU: new patient populations shift targets of care Pediatrics 2015;135(2):e289291 60 October TW, Dizon ZB, Arnold RM, Rosenberg AR Characteristics of physician empathetic statements during pediatric intensive care conferences with family members: a qualitative study JAMA Netw Open 2018;1(3):e180351 61 Meadors P, Lamson A Compassion fatigue and secondary traumatization: provider self care on intensive care units for children J Pediatr Health Care 2008;22(1):24-34 e3 Abstract: Patient- and family-centered care (PFCC) is a model of care delivery that partners with patients and their families to optimize the provision of high-quality healthcare It is built on mutual respect, collaborative communication, and shared decision-making This chapter details the benefit of incorporating PFCC into practice, including improving patient and family satisfaction; reducing stress and anxiety; and, ultimately, increasing the quality, efficacy, efficiency, and safety of care delivered It also outlines the barriers to implementing PFCC in current practice Key Words: Patient- and family-centered care, family satisfaction, shared medical decision-making, collaborative communication, family-centered rounds, cultural humility, transdisciplinary care 17 Pediatric Critical Care Ethics MITHYA LEWIS-NEWBY, EMILY BERKMAN, AND DOUGLAS S DIEKEMA PEARLS “Bioethics is the discipline devoted to the identification, analysis, and resolution of value-based problems and competing moral claims that arise in medicine between patients, families, healthcare professionals, healthcare institutions, and society at large.”1 Examples of Ethical Issues in the Pediatric Intensive Care Unit Critical care clinicians (including physicians, nurses, respiratory therapists, and other staff) face issues every day in the practice of pediatric critical care medicine Some ethical issues occur daily (everyday ethics) in the pediatric intensive care unit (PICU) but may be subtle and difficult to recognize, such as how rounds are prioritized or how implicit biases are infused into clinician communication and decision-making Other ethical issues, such as a heated disagreement between the medical team and a family about the best course of action for a critically ill child (crisis ethics), are typically more obvious to everyone involved The following are examples of ethical issues that may arise in the PICU: • Prioritizing rounds to address the sickest first (prioritarianism and scarce resource allocation) • Advising a family to withdraw life-sustaining therapies in the setting of a severe brain injury (value-based judgment) 144 • • Transfusing a hemorrhaging child against the wishes of the child’s parents, who are of the Jehovah’s Witness faith (best interest standard and harm principle) • Treating an air-hungry dying child with morphine to the point of unconsciousness and bradypnea (doctrine of double effect) • Lifting sedation on an 18-year-old on extracorporeal membrane oxygenation (ECMO) to discuss the possible limitation of life support (doctrine of informed consent) • Allocating PICU beds when census reaches capacity (scarce resource allocation) Defining Bioethics • • consistent with the patient’s previously expressed values (“substituted judgment standard”) For patients who have not previously been competent, surrogates must decide what is in the best interest of the patient from the patient’s perspective (“best interest standard”) Except in emergencies, clinicians must obtain legal permission to override parental refusals of recommended medical services Clinicians must establish that the intervention will benefit the child and that forgoing the intervention places the child at significant risk of serious harm Mediation and negotiation toward finding a mutually acceptable solution should be attempted before seeking legal intervention Disputes regarding potentially inappropriate or “futile” services in cases in which there is a lack of consensus about what constitutes accepted medical practice should be resolved through a fair process-based approach • • • Ethical issues in the pediatric intensive care unit (PICU) include high-visibility crises as well as subtle everyday ethical issues that stem from values and biases that infuse daily decisions Critical care clinicians should develop an approach to ethical issues that includes (1) recognition and clarification; (2) information gathering; (3) ethical analysis; (4) communication of recommendations; and (5) support of the patient, family, and medical team Autonomy to make choices in medical decisions is embodied in the requirements of the doctrine of informed consent: disclosure, understanding, competency, and voluntariness Adolescents designated as emancipated or mature minors may be considered competent to make independent medical decisions Clinicians should strongly consider including adolescents in medical decisions even if they not possess the legal right to so Surrogate decision-making is common in the PICU For previously competent patients, surrogates should make decisions • Domains of Bioethics The practice of bioethics encompasses many different domains These domains may be present to varying degrees in individual ethical issues Value-Based Decision-Making In pluralistic societies (such as the United States) where moral diversity is prevalent, individuals or groups may have competing or conflicting moral claims These moral claims are based on differing values that are not easily compared For example, some individuals may place great value on the extension of life even if it entails significant burdens, whereas other individuals may value the quality of life more highly than life extension The clinician CHAPTER 17 Pediatric Critical Care Ethics should make every effort to identify and understand the moral values that underlie the positions of different stakeholders and understand that these values are culturally embedded State and National Laws and Legal Precedence The law interacts frequently with bioethics in several important ways First, the answer to many questions that are framed as ethical issues is based on the law (e.g., age of competency for decisionmaking) Second, at times, legal action may be required for the resolution of ethical issues (e.g., a court-appointed decisionmaker may be required in certain cases of medical neglect) Finally, legal precedent may help inform analogous bioethics cases (e.g., previous cases regarding emergent blood transfusions or the prolongation or withdrawal of life support) Professional Codes and Healthcare Organization Policies and Regulations Most medical disciplines adhere to a professional code of ethics.1,2 These codes should be considered in ethical analysis Additionally, healthcare organizations issue various policies around ethics (e.g., parental request for potentially inappropriate therapies, allocation of resources, conscientious objection, or disclosure of medical error) with which the ethicist and clinician must be familiar Finally, national healthcare organizations—such as Medicaid and Medicare, as well as insurance companies—may have regulations that impact ethical practice (such as the Centers for Medicare and Medicaid Services [CMS] requirement that all patients older than 18 years be asked about an advance directive on admission to the hospital) Communication, Negotiation, and Mediation A large portion of ethical issues stems from communication that has broken down In many cases, what may seem like an intractable dispute can be resolved by repairing communication between parties Resolving some communication problems may be facilitated by the ethicist, a role in which expert conflict mediation skills prove valuable For example, staff distress may be addressed with a staff-only meeting to better understand the roots of the distress and allow a venue in which differences of opinion can be aired Another example includes family members who feel that their goals are unheard or misunderstood and who may benefit from a series of facilitated care conferences with the medical team at which a common understanding of the situation and goals of care might be achieved Prevailing Ethical Theories and Norms Certainly, the ethicist should be knowledgeable about prevailing ethical theories and norms and adept at applying them to bioethical dilemmas (see later section for more details about specific ethical theories) There is no overarching ethical theory that can resolve all ethical dilemmas Instead, ethical dilemmas are often examined under the lens of several theories in order to come to a “best possible” recommendation It is important to recognize that these ethical theories and norms are not static and that they are society and culture dependent Who Should Address Ethical Issues in the Pediatric Intensive Care Unit? A wide variety of ethical issues arise in the PICU Different ethical issues may require different levels of analysis and resolution Some issues may be resolved with relatively basic skills, while the resolution of other issues may require significantly advanced skills 145 Some ethical issues may be resolved easily and quickly by the critical care clinician, others may require the advanced skills of an ethics consultant, and others may require review by a multimember ethics committee Critical Care Team Many ethical issues can and should be addressed by the intensivist or PICU team Just as pediatric intensivists are trained to provide primary cardiology, neurology, nephrology, palliative, and other specialized care with subspecialty consultation in complex cases, the same should be true for bioethics All pediatric intensivists should be trained in and pursue continuing education in bioethics Ethical issues are common in the PICU; all intensivists should have a solid understanding of the basic aspects involved in identifying, analyzing, and resolving bioethical dilemmas This will require an understanding of the basics of the domains mentioned earlier as well as comfort with a basic tool set for approaching ethical issues Routinely addressing basic ethical issues may resolve simpler bioethical issues quickly, help in deescalating more complex conflicts before they become intractable, and, in some cases, prevent issues from arising in the first place Ethics Consultant For more complex bioethical dilemmas, pediatric bioethics specialists may be consulted Ethicists come from a variety of disciplines, training, and experiences Ethics consultants should have advanced skills in ethical assessment and analysis, ethical and hospital processes, and interpersonal skills in negotiation, communication, and facilitation Additionally, ethics consultants should be experienced in advanced moral reasoning and ethical theory, be facile with advanced bioethical concepts, and have a strong knowledge base about how healthcare systems, clinical context, institutional policies, and health law impact ethical decisions.3 The pediatric bioethics consultant should also be knowledgeable about the unique ethical issues that arise in the pediatric setting Ethics Committee Some ethical issues may require resolution or final recommendation from a full ethics committee composed of members from a wide variety of disciplines (including nonmedical members of the local community) and representing a diverse set of values, experiences, and perspectives Ideally, ethics committees should promote a fair process and reduce the risk of arbitrariness.3,4 Examples of issues that are optimal for an ethics committee review include cases involving an intractable conflict of values, potentially high-visibility cases, and institutional ethics issues Ethics committees may also perform post-hoc review of cases handled by ethics consultants for purposes of quality improvement Approach to Bioethics Dilemmas in the Pediatric Intensive Care Unit Critical care clinicians should learn and become competent with a basic organized analytic approach to ethical dilemmas Several approaches have been published, most containing the same basic elements.5–7 In general, a systematic approach to ethical issues will involve five elements: recognition and clarification, information gathering, analysis of issues, communication of recommendations, and support (Fig 17.1 and Tables 17.1 and 17 2) ... place Ethics Consultant For more complex bioethical dilemmas, pediatric bioethics specialists may be consulted Ethicists come from a variety of disciplines, training, and experiences Ethics consultants... later section for more details about specific ethical theories) There is no overarching ethical theory that can resolve all ethical dilemmas Instead, ethical dilemmas are often examined under the... achieved Prevailing Ethical Theories and Norms Certainly, the ethicist should be knowledgeable about prevailing ethical theories and norms and adept at applying them to bioethical dilemmas (see