© Springer International Publishing Switzerland 2015
Barbara G. Jericho (ed.)Ethical Issues in Anesthesiology and Surgery10.1007/978-3-319-15949-2_55. Pediatric Patients: Do Not Resuscitate Decisions
(1)
Department of Anesthesiology, Medical College of Wisconsin-Children’s Hospital of Wisconsin, 9200 W. Wisconsin Ave, 1997, MS 735, Milwaukee, WI 53226, USA
Abstract
The ethical challenges surrounding do not resuscitate (DNR) decisions in pediatric patients differ significantly from those in adult patients. Pediatric patients are in an ethical class of their own, and rely, in most cases, on their parents to make decisions for them, albeit with the pediatric patient’s assent when appropriate. Both the initial decision to enter a DNR order and then the reevaluation of that order in the perioperative setting require timely, open, and compassionate communication on the part of the healthcare providers with the involved parties. The physician’s primary obligation in these cases is to the patient with thoughtful awareness of the needs of the family. It is the family that will have to cope with the death of their child and the decisions they have made for the rest of their lives.
Keywords
Do Not Resuscitate OrdersPediatric PatientsAnesthesiaSurgeryEnd-of-Life DecisionsCase Presentations
Case Presentation 1
A 3-year-old girl presents to the operating room for an exploratory laparotomy secondary to a small bowel obstruction. The patient is experiencing septic shock and requires an epinephrine infusion to support her blood pressure. The patient has acute lymphocytic leukemia, which despite extensive chemotherapy and a bone marrow transplant has not gone into remission. The parents have decided on palliative care for their child at this point in time. The surgeon and anesthesiologist contact the oncologist to clarify if the patient has a DNR order. The oncologist answers, “We touched on the subject and the parents would like to be contacted should the child suffer a cardiac arrest intraoperatively to discuss the options and make the decision at that time.”
Case Presentation 2
A 6-year-old boy is scheduled for an emergency ventriculoperitoneal (VP) shunt revision. He has a brainstem glioma for which he previously received chemotherapy and the placement of a VP shunt for the ensuing hydrocephalus. The patient has intractable headaches and nausea/vomiting secondary to the malfunction of the VP shunt. The patient’s prognosis is grave and the parents, the child, and the oncology team agreed on a DNR order, which they would like to maintain throughout the perioperative period. The neurosurgeon and anesthesiologist told the family that the DNR order would be upheld in the perioperative period, but now the neurosurgeon takes the anesthesiologist aside and states “under no circumstances will I let this child die in the operating room.”
Introduction
Shortly after the advent and propagation of cardiopulmonary resuscitation in the 1960s, the enthusiasm of reviving every cardiac arrest patient was hampered by the unintended consequences that patients and healthcare providers had to face. It quickly became clear that not every patient could or should be resuscitated. The weighing of the benefit of prolonging a patient’s life versus the burden of the patient suffering and postponing the inevitable had to be addressed. In 1974, the American Medical Association published the “Standards for Cardiopulmonary Resuscitation (CPR) and Emergency Cardiac Care (ECC)”, which stated “CPR is not indicated in certain situations, such as in cases of terminal irreversible illness where death is not unexpected” and also proposed that Do Not Resuscitate (DNR) orders be written in the chart [1]. About the same time, the modern medical ethics movement gained traction, including the upholding of the principle of patient autonomy. In 1990, the Patient Self-Determination Act was passed mandating“…that, in those healthcare institutions which receive Medicare or Medicaid funding, patients must be informed in writing upon admission of (1) their right to accept or refuse treatment, (2) their right under existing state laws regarding advance directives, and (3) any policies which the institution has regarding the withholding or withdrawing of life-sustaining treatments” [2]. Yet, the acceptance of DNR orders in the perioperative setting was slow (see Chapter 4 for a more detailed discussion on this topic). Finally in 1993, The American Society of Anesthesiologists established the “Ethical Guidelines for the Anesthesia Care of Patients with Do-Not-Resuscitate Orders or Other Directives that Limit Treatment” that recommended that DNR orders be reevaluated for the perioperative period to reflect the patient’s wishes [3]. Subsequently the American College of Surgeons released the “Statement on Advance Directives by Patients: “Do Not Resuscitate” in the Operating Room”, which also recommended the reevaluation of existing DNR orders prior to surgery [4].
The ethical challenges surrounding perioperative DNR decisions in pediatric patients can differ from those in the adult patient. In fact, some would consider pediatric patients an ethical class of their own [5]. Pediatric patients are at the beginning of their life, whereas the elderly patient has often lived a long and fulfilled life by the time end-of-life issues have to be addressed. Also, pediatric patients include multiple age groups unlike adults, ranging from neonates to adolescents. Moreover, adults with decision-making capacity can make their own decisions regarding perioperative DNR orders unlike most pediatric patients. With medical-decision making in most pediatric cases, informed permission from the parent or guardian is obtained with assent of the patient if the child is of a particular developmental age. The evaluation of a child’s ability to assent has to be done in the context of their developmental age and decision-making abilities, and not necessarily based on their chronological age alone. See Chap. 1 for a more detailed discussion on informed consent for pediatric patients, adolescents, and emancipated minors.
This chapter addresses perioperative do not resuscitate decisions in pediatric patients, the reluctance of physicians to address do not resuscitate decisions, potential obstacles to honoring perioperative do not resuscitate orders, and futile cardiopulmonary resuscitation in pediatric patients.
Reluctance to Address Do Not Resuscitate Decisions
The reluctance and delay of physicians in addressing DNR decisions in critically or terminally ill children can unnecessarily prolong a child’s suffering and the child’s exposure to ineffective therapy instead of focusing efforts on the comfort of the child and the preservation of the child’s dignity [6, 7]. Also, entering a DNR order when death is imminent may not allow the parents and other relatives enough time to prepare emotionally for the child’s death. From a parent’s perspective, the decision to agree to a DNR order may be perceived as betraying their child. Moreover, the time immediately prior to the death of their child as well as how their child dies, will probably remain forever in the parents’ minds and influence the rest of their lives [8].
Because of the potential parental guilt and long-term emotional after effects, it may be challenging for some physicians to initiate these end-of-life discussions. Some physicians feel uncomfortable presenting bad news and causing sadness to patients and their families, lack the knowledge and experience on how to present unpleasant news, anticipate conflict with the patient and/or family, have medical-legal concerns, are in denial that the death in unavoidable, or have limited knowledge of advance directives [9]. In fact, in a study by Connors et al., only 41% of patients engaged in a discussion with their physicians about CPR, and in 80% of the cases the physicians misunderstood the patient’s preferences [10]. In a study by Hilden et al. the attitudes, practices, and challenges of pediatric oncologists involving end-of-life care were assessed [11]. This study identified physician communication and the lack of formal training as barriers in addressing end-of-life issues [11]. In fact, 47% of the pediatric oncologists did not initiate a discussion of advance directives and, thus, the burden of initiating this discussion was placed on the family [11]. Furthermore, only 10% of the pediatric oncologists had formal courses in pediatric end-of-life care in medical school and only 2.2% had a clinical rotation in hospice or palliative care [11]. Despite the gravity of the situation, parents are able to participate in discussions with the physicians [12]. In fact, in a recent study from the Netherlands addressing communication between physicians and parents concerning end-of-life decisions for their children, the study in most cases indicated that “parents’ intense emotions of anxiety, grief, and distress did not hinder them from asking relevant questions and from clearly explaining their considerations and preferences” [12].