151CHAPTER 17 Pediatric Critical Care Ethics clearly are not medically indicated, such as antifungal medications for a bacterial pneumonia or an appendectomy for acute gastro enteritis There are other[.]
CHAPTER 17 Pediatric Critical Care Ethics clearly are not medically indicated, such as antifungal medications for a bacterial pneumonia or an appendectomy for acute gastroenteritis There are other circumstances, however, when parents and the medical team have value-based disagreements about medical therapies A classic example is that of parents who demand ongoing mechanical ventilation for their child in a persistent vegetative state against the recommendation of the medical team These cases involving requests or demands for potentially inappropriate or nonbeneficial treatments (previously known as “futility” cases) require special consideration primarily because it is difficult to prioritize conflicting values in our pluralistic society To resolve these value-based disagreements, most major medical societies recommend the use of what is called a “fair process-based approach.” Once again, optimizing early intrateam and teamfamily communication, as well as attempts at early conflict resolution, may prevent many of these cases from reaching a crisis level.21 (For a complete discussion of this complicated topic, see Chapter 16.) Other Ethical Issues in the Pediatric Intensive Care Unit Research Ethics In the quest for continual improvement of the delivery of critical care, children admitted to the PICU are often participants in research Clinicians should be familiar with the basic ethical and regulatory aspects of clinical research in children.22,23 The doctrine of informed consent applies to most research Child assent is generally required for research involving children unless an institutional review board (IRB) has waived the regulatory requirement for child assent because the child lacks the capacity for assent or the research offers a prospect of direct benefit to the child that is not available outside of the research In healthy children, only research that poses no more than minimal risk to the child is acceptable In children with disease, more than minimal risk may be acceptable only if there is a prospect of direct benefit to the individual child or if the research is likely to yield generalizable knowledge that is vital to understanding the child’s condition and the research exposes the child to no more than a minor increase over minimal risk All research requires approval of an IRB There are additional ethical considerations regarding research in the PICU First, patients and families in the PICU are commonly under tremendous duress, are particularly vulnerable due to critical illness, and may have difficulty truly engaging in the informed consent process.24 Second, PICU clinicians and researchers are often one and the same; thus, families may feel conflicted about declining research and may worry about how their lack of research participation may influence the clinical care that their child receives Researchers should be cautious to avoid undue influence or pressure on families when approaching them about enrollment in PICU research Resource Allocation Resource allocation is pertinent in the PICU in several ways As PICUs are often functioning at or near capacity, the most basic resources (such as beds and nurses) may require thoughtful 151 allocation Moreover, planning for disasters and other surges in the need for critical care requires careful consideration of how scarce resources will be allocated when multiple demands exceed those resources Adding to the complexity, one of the greatest ethical dilemmas facing our current generation is the need to control resource consumption and allocate healthcare resources in a sustainable way on a daily basis As technology advances at breathtaking speeds, there is more and more we can to prolong life What is our individual or collective role in controlling the use of technology and practicing stewardship of our resources? National experts have thus far been unable to come to consensus on an ethical approach to fairly allocate resources during disasters or how to consistently and fairly balance cost, quality of care, and quality of life in the critical care setting Importantly, resource allocation policies should be addressed at the policy level, not at the bedside by individual clinicians Individual institutions should have clear protocols about allocation of limited resources (e.g., PICU beds, ventilators, ECMO circuits, diversion policies) that may occur during times of surge Using a predetermined set of standardized criteria can help to mitigate bias in individual triage decisions, thus avoiding potential injustices caused by variability ICU clinicians should engage at the institutional, regional, and national level to affect public policy regarding the allocation of resources Finally, any resource allocation strategy should be developed with broad social input and should be transparent25–28 (see also Chapter 9) Ethical Issues at the End of Life Many ethical dilemmas arise at the end of life These issues— which include withdrawing and withholding life support, analgesia, and sedation at the end of life, along with the doctrine of double effect, definitions of death, and organ donation—are covered in other chapters (see Chapters 18 to 20) Limits to Clinician Refusals Generally, clinicians have no legal duty to provide illegal therapies, therapies for which the physician is not qualified or competent to provide, therapies that are considered “unnecessary” or “nonindicated” (such as antifungals for a bacterial pneumonia), or any therapy that is disallowed by institutional or legal decision However, clinicians may not refuse to provide accepted medical care to patients on the basis of invidious discrimination (e.g., race, gender) There is ongoing debate, however, about the extent to which a clinician can refuse to provide accepted medical care based on personal moral beliefs, also known as conscientious objections.29,30 Generally, these types of refusals should be accommodated only if the refusal will not harm the patient and the refusal will not create undue burdens for colleagues or the institution Providing a personal exemption under these circumstances typically requires that another clinician take over the care of the patient in a timely manner Accommodation may not be possible in all cases; in such instances, the clinician would be required to provide the service or face institutional or legal consequences Importantly, a conscientious objection is not sufficient justification for unilaterally forgoing life-sustaining therapies against the wishes of a patient or surrogates A conscientious objection 152 S E C T I O N I I I Pediatric Critical Care: Psychosocial and Societal should be used only to request a personal exemption from providing a service (a shield), not to impose the clinician’s moral values onto the patient (a sword) A fair process-based approach should be used to resolve such conflicts, as discussed previously Medical Training Many PICUs are located within pediatric teaching hospitals Nursing students, medical students and residents, and other professional trainees may rotate through PICUs, learning valuable critical care medicine There are also a fair number of PICUs nationally that have established pediatric critical care medicine fellowships These training programs are essential to continuing to train the next generation of pediatric intensivists The balance of benefits to the trainee (and, potentially, patient and family) must be weighed against the potential risks and burdens to the patient and family from receiving care from an inexperienced clinician, particularly in the setting of a critically ill child To mitigate the risks and burdens to the child and family, other teaching methods (such as simulation) should be optimized, strict standards for supervision should be applied until competency is established, and the level of training should always be disclosed to the family31 (see also Chapter 10) Use of Unproven Medical Therapies In the often dramatic and emotionally charged fight to save a child’s life, the medical team may consider using medical therapies that are new, have little to no evidence, or can be considered truly experimental outside of a conventional research setting Typically, clinicians consider these options only when all other conventional options have failed and the outcome without them is near-certain death The potential benefits to using unproven medical therapies include prolonging the child’s life, pushing the envelope for the development of new therapies and technologies over time, and adding to the fund of knowledge about the therapy Because childhood critical illness is relatively rare, large randomized controlled trials may be unrealistic On the other hand, although idealistically applied, use of these unproven therapies or technologies may burden patients, families, staff, and healthcare systems with little gain An earnest attempt to consider the balance of benefit and burden of unproven therapies must be undertaken before they are offered to families Clinicians should be aware of any conflict of interest or selfbenefit that they may receive from use of the therapy The lack of evidence for the therapy should be carefully disclosed to the family.23 Finally, attempts should be made to enroll in ongoing trials of the therapy or, if this is not available, at the very least, details of the case should be carefully documented and published if possible Finally, clinicians should be aware of when an innovative therapy, device, or procedure is regulated by the US Food and Drug Administration because additional requirements exist in these situations Global Health It is increasingly common for pediatric critical care clinicians to be intertwined with global health delivery in resource-limited settings in several ways: (1) clinicians may participate in medical missions or disaster relief efforts, (2) US fellowships may train clinicians from other countries, and (3) pediatric critical care clinicians may engage in helping to develop PICUs or training programs in other countries Certainly, much can be gained from sharing knowledge and experience and developing these relationships As always, clinicians should be careful to not impose US cultural values and norms onto other cultures and societies Importantly, ethical principles familiar to the US critical care clinician are not necessarily universal and should not be applied indiscriminately to other cultures US clinicians may be emotionally challenged by practicing under different ethical norms (particularly when caring for critically ill children) and should be prepared to refrain from judging unfamiliar values Systems developed to provide critical care in other countries should meet the needs of the people who use them and should be developed to be self-sustaining32,33 (see Chapter 8) Finally, ethical dilemmas may arise for patients and families from other countries who require critical care in the United States It is important to engage in learning about the family’s values and cultural norms when addressing ethical issues in this setting Incorporating these sometimes unfamiliar values and norms into an ethical analysis may be challenging, particularly when they not coincide with Western notions of patient autonomy, patient-centered best interests, or the appropriateness of disclosure of medical information to the patient Medical Errors With rare exception, medical errors of all types should be disclosed to patients and families.34,35 Truthfulness with patients and surrogates should be considered part of the fiduciary duty of a clinician Any determination that an error should not be disclosed to a patient or family should be reviewed by a third party or a larger committee If a clinician witnesses another’s error, the clinician is similarly obligated to take steps to ensure that the error is disclosed Relationship Boundaries Clinicians in the PICU form relationships with patients and families at a stressful time in their lives At times, intense, deep, caring relationships may develop; these can be meaningful and therapeutic for the clinician as well as the patient or family The long-standing medical culture of training clinicians to maintain emotional distance from patients and families may not only be unrealistic in the emotionally charged PICU but also contribute to career dissatisfaction and burnout Additionally, families consistently report desiring clinicians who genuinely care about them and their child Deep, genuine, caring relationships between clinicians and patients and families may be beneficial.36 Care should be taken, however, to avoid nonbeneficial or harmful relationships Personal attachments that cloud clinical judgment should be avoided Romantic or overly intimate relationships should be avoided Caution should be exercised when considering a relationship that extends beyond the walls of the PICU and boundaries of the medical relationship, including social media contact.37 Preventive Ethics Many ethical dilemmas have recurring themes and common triggers and may be predicted before the conflict reaches a state of CHAPTER 17 Pediatric Critical Care Ethics crisis A proactive—as opposed to reactive—approach may address, deescalate, or even prevent crisis ethics situations from arising This would clearly be of benefit to the patient, family, staff, and institution alike One approach is to embed an ethicist in the PICU to make rounds and identify ethical issues to be addressed proactively Another approach is to create PICU systems to address common triggers, such as assigning continuity physicians to chronic patients However it is accomplished, it is in everyone’s interest to avoid intractable crisis ethical dilemmas.38 Goals for the Ethical Practice of the Intensivist It is essential for critical care clinicians to understand the basis for complex ethical decisions and actions so that intensivists’ patient care remains morally and ethically sound in the setting of high stakes, high pressures, competing needs, great uncertainty, and diverse perspectives and values There are few absolutes in bioethics By its nature, it is a continually shifting field to which intensivists must constantly adjust and to which intensivists must actively contribute Despite changes and advances in this field, critical care clinicians can continually provide the best, most ethical care by understanding the history of ethical standards and current debate Intensivists must continue to focus on compassionate and empathetic care, which will nearly always identify the right course of action Critical care team members must value collaboration and constantly work to improve their communication and mediation skills Critical care clinicians should open their hearts to deep relationships and be willing to explore the values of others and their own Finally, intensivists should always be open to incorporating the expertise of others who can add to their practice An intentional focus on these qualities will promote ethically sound care even in a rapidly changing and inherently uncertain environment (Box 17.2) • BOX 17.2 153 Goals for Ethical Practice of the Intensivist Focus on Compassionate and Empathetic Care • • • • • Value collaboration with patients, families, and colleagues Hone relational techniques and communication and mediation skills Continually explore self-values and values of others Develop a basic approach to ethical dilemmas Understand the history and meaning of prevailing ethical norms applicable in the intensive care unit • Stay up to date on current ethical controversies applicable in the intensive care unit • Know when to involve experts in ethics, conflict resolution, and family and staff support Key References American Academy of Pediatrics, Committee on Bioethics Guidelines on foregoing life-sustaining medical treatment Pediatrics 1994;93: 532-536 Beauchamp TL, Childress JF Principles of Biomedical Ethics 5th ed New York, NY: Oxford University Press; 2001 Bosslet GT, White DB, Au D, et al An official ATS/AACN/ACCP/ESICM/SCCM policy statement: responding to requests for futile and potentially inappropriate treatments in intensive care units Am J Respir Crit Care Med 2015;191:1318-1330 Diekema DS Parental refusals of medical treatment: the harm principle as threshold for state intervention Theor Med Bioeth 2004;25:243-264 Katz AL, Webb SA, Committee on Bioethics, American Academy of Pediatrics Technical report: informed consent in decision-making in pediatric practice Pediatrics 2016;138(2):e20161485 Moon M, and the American Academy of Pediatrics Committee on Bioethics Policy statement: institutional ethics committees Pediatrics 2019;143(5):e20190659 Morrison W, Clark JD, Lewis-Newby M, Konn AA Titrating clinician directiveness in serious pediatric illness Pediatrics 2018;142: S178-S186 The full reference list for this chapter is available at ExpertConsult.com e1 References American Medical Association Council on Ethical and Judicial Affairs Code of Medical Ethics: Current Opinions with Annotations, 2012-2013 Chicago, IL: American Medical Association; 2013 American Nurses Association Code of Ethics for Nurses with Interpretive Statements Silver Spring, MD: ANA; 2008 ABSH ASBH Core Competencies for Health Care Ethics Consultation 2nd ed Glenview, IL: American Society for Bioethics and Humanities; 2011 Moon M, and the American Academy of Pediatrics Committee on Bioethics Policy statement: institutional ethics committees Pediatrics 2019;143(5):e20190659 Kaldjian L, Weir R, Duffy T A clinician’s approach to clinical ethical reasoning J Gen Intern Med 2005;20:306-311 Fox E, Berkowitz KA, Chanko BL, Powell T Ethics Consultation: Responding to Ethics Questions in Health Care www.ethics.va.gov/ IntegratedEthics A Case-Based Approach to Ethical Decision-Making In: Jonsen AR, Siegler M, Winslade W Clinical Ethics 7th ed New York: McGraw-Hill; 2010 Pellegrino ED, Thomasma DC For the Patient’s Good: The Restoration of Beneficence in Health Care New York, NY: Oxford University Press; 1988 Beauchamp TL, Childress JF Principles of Biomedical Ethics 5th ed New York, NY: Oxford University Press; 2001 10 Rushton CH Defining and addressing moral distress: tools for critical care nursing leaders AACN Adv Crit Care 2006;17:161-168 11 Berg JW, Appelbaum PS, Lidz CW, Parker LS Informed Consent: Legal Theory and Clinical Practice 2nd ed Fair Lawn, NJ: Oxford University Press; 2001 12 Field MJ, Cassel CK, eds Institute of Medicine, Committee on Care at the End of Life: Approaching Death: Improving Care at the End of Life Washington, DC: National Academies Press; 1997 13 American Academy of Pediatrics, Committee on Bioethics Guidelines on foregoing life-sustaining medical treatment Pediatrics 1994;93:532-536 14 Katz AL, Webb SA, Committee on Bioethics, American Academy of Pediatrics Technical report: informed consent in decision-making in pediatric practice Pediatrics 2016;138(2):e20161485 15 Diekema DS Adolescent refusals of life-saving treatment: are we asking the right questions? Adolesc Med State Art Rev 2011;22: 213-228 16 Kon AA, Davidson JE, Morrison W, et al Shared decision making in ICUs: an American College of Critical Care Medicine and American Thoracic Society Policy Statement Crit Care Med 2016; 44(1):188-201 17 Morrison W, Clark JD, Lewis-Newby M, Konn AA Titrating clinician directiveness in serious pediatric illness Pediatrics 2018;142: S178-S186 18 Antommaria AHM, Weise KL, and the American Academy of Pediatric Committee on Bioethics Policy Statement: conflicts between religious or spiritual beliefs and pediatric care: informed refusal, exemptions, and public funding Pediatrics 2013;132:962-965 19 Diekema DS Religious objections to medical care In: Jennings B, Eckenwiler L, Kaebnick G, et al, eds Bioethics 4th ed Farmington Hills, MI: MacMillan Reference USA; 2014 20 Diekema DS Parental refusals of medical treatment: the harm principle as threshold for state intervention Theor Med Bioeth 2004;25: 243-264 21 Bosslet GT, White DB, Au D, et al An official ATS/AACN/ACCP/ ESICM/SCCM policy statement: responding to requests for futile and potentially inappropriate treatments in intensive care units Am J Respir Crit Care Med 2015;191:1318-1330 22 Field MJ, Berman RE, eds Institute of Medicine: Ethical Conduct of Clinical Research Involving Children Washington, DC: National Academies Press; 2004 23 Diekema DS Conducting ethical research in pediatrics: a brief historical overview and review of pediatric regulations J Pediatr 2006;149:S3-S11 24 Hulst JM, Peters JW, van den Bos A, et al Illness severity and parental permission for clinical research in a pediatric ICU population Intensive Care Med 2005;31:880-884 25 Persad G, Wertheimer A, Emanuel EJ Principles for allocation of scarce medical interventions Lancet 2009;373:423-431 26 Christian MD, Toltzis P, Kanter RK, et al Treatment and triage recommendations for pediatric emergency mass critical care Pediatr Crit Care Med 2011;12:S109-S119 27 Sinuff T, Kahnamoui K, Cook DJ, et al Rationing critical care beds: a systematic review Crit Care Med 2004;32:1588-1597 28 Truog RD, Brock DW, Cook DJ, et al Rationing in the intensive care unit Crit Care Med 2006;34:958-963 29 Lewis-Newby M, Wicclair M, Pope T, et al Managing conscientious objections in intensive care medicine: an official policy statement of the American Thoracic Society Am J Respir Crit Care Med 2015; 191:219-227 30 Committee on Bioethics Policy statement—physician refusal to provide information or treatment on the basis of claims of conscience Pediatrics 2009;124:1689-1693 31 Ziv A, Wolpe PR, Small SD, Glick S Simulation-based medical education: an ethical imperative Simul Healthc 2006;1:252-256 32 Hyder AA, Pratt B, Ali J, et al The ethics of health systems research in low- and middle-income countries: a call to action Glob Public Health 2014;9:1008-1022 33 Riviello ED, Letchford S, Achieng L, Newton MW Critical care in resource-poor settings: lessons learned and future directions Crit Care Med 2001;39:860-867 34 O’Connor E, Coates HM, Yardley IE, Wu AW Disclosure of patient safety incidents: a comprehensive review Int J Qual Health Care 2010;22:371-379 35 Boyle D, O’Connell D, Platt FW, Albert RK Disclosing errors and adverse events in the intensive care unit Crit Care Med 2006; 34:1532-1537 36 Remen RN Practicing a medicine of the whole person: an opportunity for healing Hematol Oncol Clin North Am 2008;22:767-773 37 Committee on Bioethics Policy statement—pediatrician-familypatient relationships: managing the boundaries Pediatrics 2009; 124:1685-1688 38 US Department of Veterans Affairs National Center for Ethics in Health Care, Preventive Ethics: Addressing Ethics Quality Gaps on a Systems Level 2nd ed Washington, DC: VA; 2014 e2 Abstract: Ethical questions arise every day in the rapidly changing and inherently uncertain environment of the pediatric intensive care unit It is essential for critical care clinicians to understand the basis for complex ethical decisions and actions to ensure that patient care remains morally and ethically sound in the setting of high stakes, high pressures, competing needs, and diverse perspectives and values Key words: Bioethics, shared decision-making, doctrine of informed consent, surrogate decision-making, scarce resource allocation, communication, harm principle, mediation, adolescent decision-making ... Berkowitz KA, Chanko BL, Powell T Ethics Consultation: Responding to Ethics Questions in Health Care www.ethics.va.gov/ IntegratedEthics A Case-Based Approach to Ethical Decision-Making In: Jonsen... Preventive Ethics Many ethical dilemmas have recurring themes and common triggers and may be predicted before the conflict reaches a state of CHAPTER 17 Pediatric Critical Care Ethics crisis... or even prevent crisis ethics situations from arising This would clearly be of benefit to the patient, family, staff, and institution alike One approach is to embed an ethicist in the PICU to