154 18 Ethical Issues Around Death and Dying MEREDITH G VAN DER VELDEN AND JEFFREY P BURNS • Although decision making at the end of life most commonly rests with a child’s parents, there may be times[.]
18 Ethical Issues Around Death and Dying MEREDITH G VAN DER VELDEN AND JEFFREY P BURNS • Many of the ethical issues that emerge in the care of the critically ill child so at the end of life Although many controversies still exist and new ethical dilemmas continually surface when facing death in the pediatric intensive care unit (PICU), significant progress toward a degree of consensus has been made over the years This chapter provides an overview of ethical concerns that arise at the end of life in the PICU, including decision-making near the end of life, the ethics of withdrawal and withholding of life-sustaining treatments, issues around death determination, and issues that arise after death has been declared Much of the discussion of the delivery of end-of-life care can be found in the chapter on palliative care (see Chapter 19) Decision-Making at the End of Life There is little debate that decision-making authority for infants and children, particularly those in the PICU who are unable or too young to make decisions, rests with the parents.1 In light of the diversity of individual and family values and the complexity of the decisions being made, parents are justifiably provided wide discretion in these healthcare decisions for their children.2 However, there is similar consensus that physicians have an obligation to protect their patients in a way that may involve challenging the wishes of the parents on behalf of a child’s “best interests” when this rare situation arises.3 More than 30 years ago, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical Research3 produced the original guiding documents for most of these issues In addition to addressing the determination of “best interests” when 154 • • Although decision-making at the end of life most commonly rests with a child’s parents, there may be times when a parent requests therapies that are deemed inappropriate by the clinical team As truly futile treatment is difficult to define, deliberation over possibly inappropriate therapies should focus on intensive communication and negotiation, with hospital processes available for support and deliberation when this fails Rationing decisions should not be made for an individual patient when evaluating the appropriateness of a treatment at the • • • PEARLS end of life Rather, policies on rationing should be made at the institutional level The majority of deaths that occur in the pediatric intensive care unit so following a decision to withdraw or withhold life-sustaining treatments There is no legal or moral distinction between withdrawing and withholding treatment The doctrine of double effect supports the use of the titration of sedatives and analgesics to ensure comfort at the end of life approaching treatment options, the commission also discussed an approach to decision-making with parents It concluded that although decision-making authority should rest with the parents under most circumstances, there may be times when it is appropriate for the physician to act against the parents’ wishes, specifically when parents choose to forgo clearly beneficial treatment and when parents prefer to provide futile treatment (Table 18.1) Although most physicians agree, and ethics and the law support, the opinion that delivering treatment that is “futile” is inappropriate, the concept of futility has been so controversial that it is rarely an effective support for a physician in overriding a parent’s wishes Regardless, most major societies—including the American Academy of Pediatrics (AAP), Society of Critical Care Medicine (SCCM), and American Medical Association (AMA)— support the physician in withholding futile treatments from patients when it can be so determined.1,4,5 The problem still rests in determining when care is “futile.” While much progress has arguably been made in our approach to cases of “futility” as practitioners in the intensive care unit (ICU), situations continue to arise in which parents wish to administer treatments and support that are deemed inappropriate and nonbeneficial by the providers In these scenarios, how practitioners balance the interests of the patient, family, society, and themselves? Is determining “futility” in these situations possible or even appropriate? Burns and Truog addressed the concept of futility and these questions by describing historical and generational accounts of the notion of futility In doing so, they suggest a practical approach to resolving questions of medical futility.6 The first CHAPTER 18 Ethical Issues Around Death and Dying TABLE Decision-Making in the Pediatric Intensive 18.1 Care Unit Physician’s Assessment of Treatment Options Parents Prefer to Accept Treatment Parents Prefer to Forgo Treatment Clearly beneficial Provide treatment Provide treatment (during review process) Ambiguous/uncertain Provide treatment Forgo treatment Futile Provide treatment Forgo treatment generation describes attempts at defining futility in order to resolve disputes with family members These have included attempts to quantitatively (e.g., treatment has been useless in the past 100 cases), qualitatively (e.g., “treatment that merely preserves permanent unconsciousness”),7 and physiologically (e.g., treatment unable to achieve its physiologic goal) define the concept All of these definitional approaches have been largely unsuccessful in actually resolving questions of disputed therapies between families and care providers as a result of flaws inherent in the definitions, along with failure to reach consensus on the definition in the background of a pluralistic society.8 Following recognition that attempts to define futility failed, the second generation described the subsequent period, which attempted to address disputed cases through procedures aimed at resolution These have taken the form of individual hospital policies outlining processes to be followed in cases in which the appropriateness of a therapy was brought into question and attempts at consensus between the family and clinicians failed In general, these policies aim to represent all parties involved and most often include an ethics consultation with possible courses of action if resolution of the dispute is not achieved by mere involvement of this third party The possible actions include further attempts at resolution, transfer of care, or judicial involvement for the purpose of, or hospital endorsement of, unilateral action on behalf of the clinical team Ultimately, the policies transfer the decision-making authority from the bedside clinicians and family to this third party With these processes, the major concern that arises focuses on the neutrality of the committee on behalf of the disputed parties.9 A survey on attitudes and practices of pediatric critical care providers showed that despite most hospitals having these policies, providers not make unilateral decisions to forgo treatment against the wishes of the family but rather provide the requested support until consensus is reached.10 While this reports practice rather than preference, another survey demonstrated that the majority of pediatric intensivists questioned are not in support of limiting therapies against the wishes of families,11 giving further support to the notion that even with policies in place, acting against the wishes of the family is not likely The final generation focuses on enhancement of early communication and negotiation with families when anticipating and making decisions about the use of life-sustaining treatments In concert, this involves clinicians supporting each other while they respect the wishes of the family and deliver care with which they may disagree This final generation, while not the easiest or most straightforward, may represent the approach that is most aligned with the underpinnings of dedicated critical care—to provide support for patients and their families through illness and death 155 A final issue relevant to the discussion of decision-making around the use of life-sustaining therapies in a critically ill patient is the rationing of medical care While it can be tempting to consider cost control in these discussions, as it is a pressing consideration in healthcare today, it should be separated from the decision of the appropriateness of a medical treatment for an individual patient The questions of cost and appropriateness, although both important, are fundamentally different, and the approaches to answering them should reflect this Furthermore, ICU care is known to be costly, but the limitation of its use at the end of life is not certain to result in significant cost savings.12 Rationing at the bedside can be complicated.13 For this reason, the AAP has supported the separation of rationing decisions and bedside decision-making for any individual patient.14 Requests for Potentially Inappropriate Treatments in the Intensive Care Unit A joint statement by the American Thoracic Society, American Association for Critical Care Nurses, American College of Chest Physicians, European Society for Intensive Care Medicine, and SCCM recently addressed this issue and endorsed the following recommendations, among others6: Institutions should implement strategies to prevent intractable treatment conflicts, including proactive communication and early involvement of expert consultants The term “potentially inappropriate” should be used, rather than futile, to describe treatments that have at least some chance of accomplishing the effect sought by the patient, but clinicians believe that competing ethical considerations justify not providing them Clinicians should explain and advocate for the treatment plan they believe is appropriate Conflicts regarding potentially inappropriate treatments that remain intractable despite intensive communication and negotiation should be managed by a fair process of conflict resolution; this process should include hospital review, attempts to find a willing provider at another institution, and opportunity for external review of decisions When time pressures make it infeasible to complete all steps of the conflict resolution process and clinicians have a high degree of certainty that the requested treatment is outside accepted practice, they should seek procedural oversight to the extent allowed by the clinical situation and need not provide the requested treatment Use of the term “futile” should be restricted to the rare situations in which surrogates request interventions that simply cannot accomplish their intended physiologic goal Clinicians should not provide futile interventions.15 Withholding and Withdrawing of Life-Sustaining Treatments While disagreements about the use of life-sustaining treatment arise on occasion, it is far more common that a family and the medical team reach consensus about a decision to withdraw lifesustaining therapies Furthermore, a majority of deaths in the PICU occur after the withdrawal of life-sustaining therapies.16,17 While there may be regional, national, and international variability in the number and percentage of patients who have a decision made to withdraw life-sustaining therapies,17 the ethics of the process of withdrawing life-sustaining treatments remain the same 156 S E C T I O N I I I Pediatric Critical Care: Psychosocial and Societal At this stage, the difference between withdrawing and withholding treatment may come into question Although the actions of withdrawing and withholding a therapy may feel undeniably different to families and the care team, there is no true moral or legal distinction between the two.3 Any treatment not directed at comfort may be withdrawn or withheld if agreed upon by the family and clinical team, including, but not limited to, mechanical circulatory or ventilatory support, medications supporting the circulation, renal replacement therapy, antibiotic therapy, and hydration and nutrition Although clinicians and families may make morally and legally defensible decisions to limit such treatments, it is never acceptable to limit care directed at providing comfort and emotional support for the patient and the patient’s family.18 Once the decision is made to focus on comfort rather than life-sustaining therapies, whether these are being withdrawn or withheld going forward, the aggressiveness of and attention to care cannot dissipate The doctrine of double effect remains the guiding principle when considering therapies to be used at the end of life when the focus has transitioned from sustenance of life to comfort While a contentious topic, related in part to concerns of oversimplification and misplaced focus on physician intent, it remains relevant and supportive when drawing the line between possibly unacceptable (e.g., euthanasia) and acceptable (e.g., aggressive palliative therapy) treatment courses.18 As alluded to, the doctrine relies on a distinction between what is intended and what is merely foreseen by the clinician It states that for any action that has two effects, one good and one bad, it is justifiable if the following four conditions are met (Box 18.1): (1) the action itself must be morally good or neutral, (2) the good and not the bad effect must be intended, (3) the good effect must be a result of the action and not by means of the bad effect, and (4) the good effect must proportionally outweigh the bad effect.19 As clinicians address a number of therapies considered when treating pain and suffering at the end of life, this doctrine supports many, such as the use of analgesia and sedation It falls short in justifying actions such as the administration of neuromuscular blockade to a dying patient, as well as other courses of treatment that might fall under the distinction of active euthanasia Both the American College of Critical Care Medicine of the SCCM and the American Thoracic Society provide guidelines on the delivery of care at the end of life, with specific recommendations on management of symptoms.18,20 Among other topics, the guidelines provide a framework for consideration of withdrawing, withholding, or administering therapies In general, whether deciding to continue or stop a therapy (e.g., antibiotics, mechanical ventilation) or considering the initiation of a new therapy for symptom management (e.g., analgesia), the decisions should center around the patient’s needs and should incorporate ongoing patient assessment and consideration of established guidelines.18 • BOX 18.1 Four Conditions of the Doctrine of Double Effect The action itself must be good or at least morally neutral The good effect and not the bad effect must be intended The good effect must be a result of the action itself and not by means of the bad effect The good effect must proportionally outweigh the bad effect Administration of Analgesics and Sedatives in End-of-Life Care Along with the avoidance of painful interventions, it is well accepted that pharmacologic interventions aimed at pain relief are indicated when withdrawing life-sustaining treatments The goal for a patient who has had life-sustaining treatments withheld or withdrawn is to treat any signs of discomfort or pain Consistent with the doctrine of double effect, the focus of analgesic medications—including opioids, with their known side effect of respiratory depression—should be directed at this perceived pain and not to directly causing death This is best accomplished by careful patient assessment and use of objective scales when appropriate and available, as well as attention to the appropriate dosing titrated to effect, based on a patient’s prior exposure to the medications being considered The medication dosing will vary patient to patient; any guidelines or procedures should reflect this anticipated variability To reiterate, the goal of administering these therapies is only to treat patient discomfort and not to hasten the dying process or treat concerns of family members with medication for the patient The latter concern can and should be dealt with in other ways In addition to emotional and psychologic support for family members, anticipatory guidance on the process can help avoid the situation in which a family may perceive discomfort and request medications without objective signs from the patient.18 Most sedative agents lack analgesic properties, but their role in symptom management at the end of life is no less relevant In addition to treating symptoms such as anxiety and agitation, they may also have a role in the treatment of refractory pain and suffering not relieved by analgesic medications This latter indication works by lowering patient consciousness until symptoms are relieved Sedation used in this manner has been labeled with terms such as palliative sedation, total sedation, and terminal sedation, the last of which has received much criticism.21 While critics of the practice claim a slide toward active euthanasia, the dominant view is that when intended and titrated to relieve symptoms, not to achieve unconsciousness or death, this does not represent euthanasia and is a key component in the delivery of quality end-of-life care.22 As with titration of analgesics, the doctrine of double effect remains the principle that makes intent the central issue and defends the process In a survey of US physicians, there exists broad support for the acceptance of unconsciousness as a side effect of sedation to treat suffering and refractory pain.23 In its statement on palliative care in children, the AAP endorses the use of adequate analgesia and sedation to treat pain and other symptoms in patients with terminal conditions while explicitly not supporting the practice of physician-assisted suicide or euthanasia.24 Is There a Role for Neuromuscular Blockade in End-of-Life Care? Neuromuscular blocking agents have no analgesic or sedative properties Furthermore, while the pharmacologic activity of these agents may give the appearance to others (i.e., family members) that a patient is without distress, in doing so they actually mask many of the objective signs of suffering that we use when titrating medications for such symptoms Thus, there is no role for the initiation of neuromuscular blockade at the end of life.18,25 The more challenging question arises when determining what to with existing neuromuscular blocking agents when the team CHAPTER 18 Ethical Issues Around Death and Dying and family have come to the decision to withdraw mechanical ventilation With the principal goal being to adequately treat a patient’s discomfort at the end of life when life-sustaining treatments have been withdrawn, attempts should be made to restore neuromuscular function, including delay in withdrawal when reasonable, in order to regain access to many of the signs and symptoms used to titrate medications for pain and discomfort However, there may be times when the restoration of function cannot be accomplished in a reasonable time period owing to factors such as altered drug metabolism and clearance resulting from organ dysfunction and length of treatment with such agents In such cases, the benefit of delaying withdrawal of mechanical ventilation may be outweighed by the burden on the family that comes with this delay In these rare cases, withdrawing mechanical ventilation without restoration of neuromuscular function is justifiable but must be balanced with extra attention to ensuring patient comfort in the absence of typical signs and symptoms of pain or anxiety.25 This is reflected in the SCCM recommendations for end-of-life care in the ICU.18 Artificial Hydration and Nutrition Any treatment that is not directed at comfort may be withdrawn or withheld at the end of life if the family so chooses and the care team is in agreement This is no less true for the administration of artificial hydration and nutrition Although withholding or withdrawing these therapies may be more psychologically distressing for caregivers and family, it is important to be clear that ethics and 157 the law not distinguish between these and other life-sustaining treatments Guidelines of the AAP and SCCM18,26,27 provide support for such decisions based on the same considerations of benefit and burden as with the withdrawal and withholding of other life-sustaining therapies.1 In recognition of the unique distress that withdrawing or withholding this therapy may present, the AAP strongly recommends the involvement of ethics committees when these decisions are being made.27 Key References Bosslet GT, Pope TM, Rubenfeld GD, et al An official ATS/AACN/ ACCP/ESICM/SCCM policy statement: responding to requests for potentially inappropriate treatments in intensive care units Am J Respir Crit Care Med 2015;191:1318-1330 Burns JP, Truog RD Futility: a concept in evolution Chest 2007;132:1987-1993 Morparia K, Dickerman M, Hoehn KS Futility: unilateral decision making is not the default for pediatric intensivists Pediatr Crit Care Med 2012;13:e311-e315 Papavasiliou ES, Brearley SG, Seymour JE, et al From sedation to continuous sedation until death: how has the conceptual basis of sedation in end-of-life care changed over time? J Pain Symptom Manage 2013; 46:691-706 Weise KL, Okun AL, Carter BS, et al Guidance on forgoing life-sustaining medical treatment Pediatrics 2017;140(3):e20171905 The full reference list for this chapter is available at ExpertConsult.com e1 References Weise KL, Okun AL, Carter BS, et al Guidance on forgoing lifesustaining medical treatment Pediatrics 2017;140(3):e20171905 Katz AL, Macauley RC, Mercurio MR, et al Informed consent in decision-making in pediatric practice Pediatrics 2016;138(2):e20161485 President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research Deciding to Forego Life-Sustaining Treatment: A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions Washington, DC: US Government Printing Office; 1983 Consensus statement of the Society of Critical Care Medicine’s Ethics Committee regarding futile and other possibly inadvisable treatments Crit Care Med 1997;25:887-891 American Medical Association Opinion 5.5 Medically Ineffective Interventions Code of Medical Ethics Chicago: American Medical Association; 2016 https://www.ama-assn.org/delivering-care/ethics/ medically-ineffective-interventions Burns JP, Truog RD Futility: a concept in evolution Chest 2007;132:1987-1993 Schneiderman LJ, Jecker NS, Jonsen AR Medical futility: its meaning and ethical implications Ann Intern Med 1990;112:949-954 Truog RD, Brett AS, Frader J The problem with futility N Engl J Med 1992;326:1560-1564 Truog RD Tackling medical futility in Texas N Engl J Med 2007; 357:1-3 10 Burns JP, Mitchell C, Griffith JL, Truog RD End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses Crit Care Med 2001;29:658-664 11 Morparia K, Dickerman M, Hoehn KS Futility: unilateral decision making is not the default for pediatric intensivists Pediatr Crit Care Med 2012;13:e311-e315 12 Luce JM, Rubenfeld GD Can health care costs be reduced by limiting intensive care at the end of life? Am J Respir Crit Care Med 2002; 165:750-754 13 Truog RD, Brock DW, Cook DJ, et al Rationing in the intensive care unit Crit Care Med 2006;34:958-963; quiz 971 14 Ethics and the care of critically ill infants and children American Academy of Pediatrics Committee on Bioethics Pediatrics 1996; 98:149-152 15 Bosslet GT, Pope TM, Rubenfeld GD, et al An official ATS/AACN/ ACCP/ESICM/SCCM policy statement: responding to requests for potentially inappropriate treatments in intensive care units Am J Respir Crit Care Med 2015;191:1318-1330 16 Burns JP, Sellers DE, Meyer EC, et al Epidemiology of death in the PICU at five U.S teaching hospitals Crit Care Med 2014;42: 2101-2108 17 Moore P, Kerridge I, Gillis J, et al Withdrawal and limitation of life-sustaining treatments in a paediatric intensive care unit and review of the literature J Paediatr Child Health 2008;44:404-408 18 Truog RD, Campbell ML, Curtis JR, et al Recommendations for end-of-life care in the intensive care unit: a consensus statement by the American College [corrected] of Critical Care Medicine Crit Care Med 2008;36:953-963 19 Beauchamp TL, Childress JF Principles of Biomedical Ethics 7th ed New York, NY: Oxford University Press; 2012 20 Lanken PN, Terry PB, Delisser HM, et al An official American Thoracic Society clinical policy statement: palliative care for patients with respiratory diseases and critical illnesses Am J Respir Crit Care Med 2008;177:912-927 21 Papavasiliou ES, Brearley SG, Seymour JE, et al From sedation to continuous sedation until death: how has the conceptual basis of sedation in end-of-life care changed over time? J Pain Symptom Manage 2013;46:691-706 22 ten Have H, Welie JV Palliative sedation versus euthanasia: an ethical assessment J Pain Symptom Manage 2014;47:123-136 23 Putman MS, Yoon JD, Rasinski KA, Curlin FA Intentional sedation to unconsciousness at the end of life: findings from a national physician survey J Pain Symptom Manage 2013;46:326-334 24 American Academy of Pediatrics Committee on Bioethics and Committee on Hospital Care Palliative care for children Pediatrics 2000;106:351-357 25 Truog RD, Burns JP, Mitchell C, et al Pharmacologic paralysis and withdrawal of mechanical ventilation at the end of life N Engl J Med 2000;342:508-511 26 Truog RD, Cist AF, Brackett SE, et al Recommendations for endof-life care in the intensive care unit: the Ethics Committee of the Society of Critical Care Medicine Crit Care Med 2001;29: 2332-2348 27 Diekema DS, Botkin JR, Committee on B Clinical report—forgoing medically provided nutrition and hydration in children Pediatrics 2009;124:813-822 ... involved and most often include an ethics consultation with possible courses of action if resolution of the dispute is not achieved by mere involvement of this third party The possible actions include... the policies transfer the decision-making authority from the bedside clinicians and family to this third party With these processes, the major concern that arises focuses on the neutrality of... life-sustaining treatments In concert, this involves clinicians supporting each other while they respect the wishes of the family and deliver care with which they may disagree This final generation, while