Objective. To identify the opportunities for and barriers to medical education about end-of-life (EOL) care in the pediatric setting.
Methods. A working group of pediatric specialists and ethicists was convened at the National Consensus Conference on Medical Education for Care Near the End-of-Life sponsored by the Open Society Institute's Project Death in America and the Robert Wood Johnson Foundation. The charge to the working group was to consider the unique aspects of death in childhood, identify critical educational issues and effective instructional strategies, and recommend institutional changes needed to facilitate teaching about EOL care for children.
Conclusions. Although providing EOL care can be challenging, the cognitive and psychologic skills needed can be taught effectively through well-planned and focused learning experiences. The ultimate goals of such instruction are to provide more humane care to very sick children, enhance bereavement outcomes for their survivors, and develop more confident clinicians.
Six specific principles regarding EOL care in the pediatric setting emerged as essential curricular elements that should be taught to all medical care providers to ensure competent patient-centered care. 1) Cognitively and developmentally appropriate communication is most effective. 2) Sharing information with patients helps avoid feelings of isolation and abandonment. 3) The needs of the patient are served when the ethical principles of self-determination and best interests are central to the decision-making process. 4) Minimization of physical and emotional pain and other symptoms requires prompt recognition, careful assessment, and comprehensive treatment. 5) Developing partnerships with families supports them in their caregiving efforts. 6) The personal and professional challenges faced by providers of EOL care deserve to be addressed.
These principles actually transcend patient age and can be used to inform medical education about the care of any terminally ill patient. Similarly, these principles of effective communication, ethical decision-making, and attention to the quality of life of patients, families, and providers apply to the care of all children regardless of diagnosis and prognosis. With this in mind, teaching about EOL care does not require a new and separate curriculum, but rather taking better advantage of the many teachable moments provided by caring for a dying patient.
- EOL =
- end-of-life •
- PCA =
- patient-controlled analysis
In this article, we present the compelling clinical and educational justifications for including explicit instruction about end-of-life (EOL) care in pediatric settings. We then provide background and specific content about several topic areas unique to the care of pediatric patients and identify readily available opportunities for instruction, including role modeling. Lastly, we review the institutional changes necessary to provide effective teaching about EOL care, and point out that shift in bias rather than allocation of resources is the critical element in implementing a successful curriculum.
UNIQUE ASPECTS OF DEATH IN THE PEDIATRIC SETTING
Epidemiology of Death in Childhood
In 1997 in the United States, ∼43 000 infants and 27 000 children between 1 and 19 years old died from all causes.1 In Canada, which has a population ∼10% that of the United States, the rate of death by age and cause is similar.2 Thus, physicians in North America are involved in the care of ∼80 000 children and adolescents who die annually.
Almost two-thirds of infant deaths occur during the first month of life. Most are attributable to congenital abnormalities, perinatal complications, infection, and other conditions that result in extended intensive care. Whereas only ∼20% of deaths during the first year of life are the result of acute, unexpected events such as sudden infant death syndrome or trauma (eg, accidents, abuse), 45% of deaths among toddlers and school-aged children are the result of trauma, and almost 80% of all deaths among adolescents are the result of accidents, homicide, and suicide.1 ,3
Differences in the distribution of cause of death by age have important implications for the kind of EOL decisions that are made and by whom. For example, a high percentage of infants and younger children die of birth-related or congenital conditions. These children either never have been or are unlikely ever to be healthy in the same sense as their peers in the general population. This situation raises difficult quality-of-life issues: how can caregivers determine best interests in the absence of information about the child's perception of life satisfaction, or about the long-term effects of treatment decisions on the family and community? In contrast, the high percentage of potentially preventable accidental deaths among previously healthy older children and adolescents creates guilt and blame, complicating decision-making about continuing or forgoing life-sustaining treatment.
Characteristics of Pediatric Death as Barriers and Opportunities for Teaching
Infrequency, prognostic uncertainty, how care is defined in congenital conditions, the patient's cognitive and emotional immaturity, and existential pain pose special challenges to teaching about pediatric death.
As a Barrier. On average, each of the ∼35 000 general pediatricians in North America cares for <3 children who die per year. Limited experience results in persistent discomfort dealing with the intense emotional responses associated with death. Physicians may also experience guilt about their inability to cure. Whatever the reason, a common reaction is to become emotionally as well as physically distant from the dying child and family.
As an Opportunity. Preparing students and trainees to manage the shock and distress associated with a child's death includes helping them explore the questions of professional competency (“Am I a failure as a doctor?”) which frequently arise. Precisely because relatively few children die, thoughtfully considering the effects of such an event on the clinician as well as the family is critical. Self-reflection groups can be especially effective training tools. Potential benefits include both increased satisfaction with professional role and increased willingness to risk remaining emotionally engaged with dying children and their families.
As a Barrier. Neonatal and infant death often results from congenital abnormalities, some of which are exceedingly rare. Given limited data, prognostication is highly frustrating. In addition, societal expectations that every child born will live further complicate recognizing when life-prolonging efforts are becoming unduly burdensome.
As an Opportunity. Because all medical decision-making entails uncertainty, teaching should focus on the physician's responsibility to tailor care to meet individual patient and family needs. In particular, learning how to prepare a family for a potentially negative outcome while also maintaining hope is a skill that trainees will apply in many difficult situations, not only those involving terminal illness. This skill can be enhanced by regular discussions of the ethical issues involved in medical care and how to elicit a family's values during, for example, family meetings.
The Relationship Between Curative and Palliative Care in Congenital Disease
As a Barrier. Although many pediatric disorders are both congenital and incurable, most are not immediately fatal. In instances in which a child lives for many years with no possibility of cure, the question of how to separate life-prolonging treatment from palliative treatment can be unanswerable. In the case of cystic fibrosis, for example, earlier, more aggressive treatment once thought to be merely palliative has, in fact, prolonged life expectancy from a few years to several decades Thus, theoretically, it may seem impossible to pinpoint the beginning of EOL care because the treatment being given is and always has been palliative (without hope of cure). However, at some point, the goals of therapy do begin to change. This shift can be the result of a variety of factors, such as questioning whether continued life is too burdensome or coming to accept the inevitability of death. For the practitioner, the skill to develop is sensitivity to subtle shifts in patient or family expectations of what the child's care should be designed to achieve.
When physicians focus solely on extending the duration of life, as opposed to maximizing the quality of life, their goal can drive futile interventions which prohibit the patient from receiving optimal comfort care. This is especially true when the institution of palliative care is viewed as an abrupt all-or-nothing change from life-prolonging to symptom-oriented care (Fig 1A).4 This dichotomization often creates major psychologic and emotional barriers to moving seamlessly toward EOL care.
As an Opportunity. If palliative care is conceptualized as always being part of the care paradigm (Fig 1B),4 students will recognize that the transition to predominantly or wholly comfort care can occur gradually and intuitively. Using this model, the students learn how to continuously monitor the relative burdens of living and of dying and adjust treatment—in one direction or the other—to maintain a balance between patient and family expectations and the types of care provided. Shifting to this model requires reordering caregiving priorities. For example, patient physical and mental comfort typically ranks as a high priority of the family throughout virtually any illness. Yet symptom management and emotional expression have typically been a lower priority of medical teaching. Thus, instruction about how to set goals of care requires a broader approach that includes attention to psychosocial, emotional, and spiritual needs throughout the child's entire course. Shifting to this model also requires teaching about how to accept a family's ambivalence about foregoing curative care by relating it to their uncertainty about what is best and the emotional tug-of-war which results from day-to-day fluctuations in the patient's condition.
A unique opportunity to teach about virtually pure palliative care is provided by participating in hospice programs where, rather than being a secret fear, impending death must be acknowledged for acceptance into hospice. This allows trainees to talk more freely with patients and families about comfort as the clear, explicit goal of treatment. Unfortunately, prognostic uncertainty makes few children eligible for hospices.5 Thus, acute care units, where treatment goals may be less clear, are the settings where most students encounter very sick children. Although not optimal, these sites still can be used to demonstrate how the entire health care team including physicians, nurses, social workers, and child life specialists can be mobilized to increase comfort. In fact, there are many such resources available to children and families. Accordingly, inviting students and trainees to a team meeting to identify a family's needs and appropriate interventions provides an excellent opportunity to point out that giving comfort care is a responsibility the physician can and should share with others.
Immaturity of the Child
As a Barrier. Even very ill children are likely to remain alert and active until late in their course. Their readiness to talk about the EOL is highly variable. On the one hand, some children truly do not understand what death is, or are unable to comprehend future time beyond a few days. On the other hand, some children readily acknowledge impending death, want to be relieved of the burden of hoping for a cure, and wish for the opportunity to discuss their questions and concerns.
As an Opportunity. Children and adolescents with chronic illnesses frequently have advanced understanding of their disease and of the concept of death.6–9 Inviting a student or trainee to observe delivery of bad news or to join in a bedside visit to a dying child provides the opportunity to hear the kinds of questions young patients have about continuing or stopping treatment and to learn how to give both sensitive and satisfying responses.
As a Barrier. For adults, the impending death of a child often raises painful existential issues, such as personal mortality, the meaning of life, and disruption of the natural order. Many children also have concerns about the meaning of their own lives, but may express them indirectly. Probing to clarify the child's meaning can be emotionally difficult for the caregiver who understands the finality of death and who can anticipate the painful grief of loss. This adult discomfort typically produces reactions such as “I really don't even want to think about this now,” or the magical idea, “Talking about it will make it happen.” These reactions become projected onto the child leading to the notion that probing provokes, rather than allays, fear and anxiety in the child.
As an Opportunity. Having trainees present when speaking directly with a child who understands that death is likely to happen soon is the most effective way to convey the range of issues which preoccupy dying children. Trainees will learn that some children are most concerned about the rituals surrounding their own death. Questions like “Can I have Pooh Bear with me?,” “Will the doctors and nurses come to the funeral?,” or “Will Grandma be waiting for me in Heaven?” need reassuring answers about the continuation of what is familiar and comfortable. Comments like “Don't cry a lot, Mommy” need a response that acknowledges the child's concern for the welfare of others but not necessarily a quick promise. And questions like “Will you keep my pictures in the album?” are ways children hope to gain reassurance that their lives have been meaningful and that they will be remembered.
CRITICAL EDUCATIONAL ISSUES AND EFFECTIVE INSTRUCTIONAL STRATEGIES
This article highlights 4 particular EOL issues—communication, pain and symptom management, ethics, and caregiver distress—which are especially problematic when the patient is a child. Each topic is introduced by a brief general discussion of the major issues to be considered followed by several specific curricular areas especially pertinent to pediatric practice which can be integrated into instructional opportunities. As will be evident, each topic requires different pedagogic approaches to present specific content and illustrate critical skills. For example, instructional techniques useful for teaching about effective communication focus on understanding what the patient is saying from a developmental perspective and the interpersonal skill of relationship building. Instruction on pain and symptom management relies not only on the presentation of didactic information about pain perception and treatment but also on methods to heighten sensitive assessment of children's verbal and behavioral manifestations of distress. Instruction on ethical issues emphasizes learning how to objectively analyze multiple perspectives on an issue. Instruction on caregiver distress relies on learned techniques of self-reflection and self-awareness. In fact, however, these skills are integral elements of providing not only good EOL care, which we use as our basic forum for illustration, but good health-care in general.
General Considerations: Providing good EOL care for children depends on establishing effective communication among the patient, the caregivers, and the health-care providers. Effective communication is complicated by the cognitive developmental differences that exist among pediatric patients of different life stages. Thus, it is imperative that students know how children understand the world around them and how they are influenced by their emotional state and social network. Didactic information illustrated by personal experiences with families or patients can provide a useful background that builds on the trainee's knowledge of general growth and development. Bluebond-Langner's classic, The Private Worlds of Dying Children, 5 is an exceptional resource that demonstrates how developmental models are useful to guide initial clinical and research inquiries, but that they must be applied flexibly, especially with children who have had significant experience with illness (Table 1).
The fact that much communication with pediatric patients involves an adult intermediary (eg, parent/guardian) further complicates how the illness is understood. Students need to learn, for example, that parents often act as information filters, consciously or unconsciously passing on only the most hopeful information or that information which reinforces their own ideas. A particularly useful instructional strategy is to include students in serial family meetings to gain an appreciation for the family's usual style of communicating and how this may influence to whom new information is given: to the parents, or to the child and parents together. A provocative question to raise prospectively with students is what to do when a patient requests to be informed before the parents or, even, instead of the parents.
Communicating About a Life-Threatening Condition: Teaching About Informing the Family: Nothing can take the place of inviting a student to attend the family meeting at which the diagnosis of a life-threatening illness is discussed. It is important to stress that factual information must be explained in nontechnical language geared to the family's vocabulary and sophistication in a manner that maintains hope without undue optimism. It is also important to counsel students that families typically react with horror and disbelief. Providing the student with this background allows the physician's intent to remain clear, despite the emotional discharge the student will witness and probably personally experience during this encounter. Controlled environments such as role play and standardized patient interviews can be used to teach students how to explore ideas about what caused the illness and how to respond to blaming comments, guilty feelings, or magical explanations.
Having the student present serves 2 other educational purposes. The first is to demonstrate the role of other team members (eg, social worker or nurse) who contribute their expertise, monitor the family's understanding, and ask clarifying questions designed to enhance family understanding. The trainee should be alerted to watch how the burden of information giving can be shared. The second purpose is to provide the student with language and attitude to use later with the family to reinforce the senior physician's message. Incorporating the trainee from the beginning also signifies that he/she is a member of the team and has a role in the child's care.
Teaching About Informing the Patient: Given the unique dynamic in pediatrics of parents as information filters, instruction about effective communication with the whole patient, the family unit, is vital. Important aspects of the communication process that trainees should be aware of include: 1) most families with elementary school age or younger children prefer to inform the child of the diagnosis themselves, often with the aid of the physician or other health care providers. The important educational message is that parents need to feel in control and they need to protect and guide their child. However, the act of telling is difficult and parents typically seek support from others to provide factual information (“This means you'll have to stay in the hospital for ∼2 weeks”) or to interpret feelings (”Your mom and dad are sad right now because this is a serious sickness. But we'll all work very hard to help you get better“). Setting the precedent for including the child in family discussions from the beginning makes it likely that inclusion will be taken for granted as the disease progresses. 2)Simple drawings or other visual aids provide patients with information about the disease and its treatment. Instruction should focus on how to gradually introduce the medically sophisticated information which families will need to understand the disease and make informed decisions. Homemade drawings can be produced on the spot and explained as they are drawn. Later, the family, including the patient, can be directed to resources available from reputable special interest organizations (eg, National Institutes of Health, American Cancer Society, National Cystic Fibrosis Foundation). Rather than stockpiling materials that quickly become outdated, trainees should be reminded to download directly from an organization's website and pass relevant information on to the child and parents. They should also understand that encouraging families to seek additional information from the internet, bookstores, magazines, and newspapers is preferable to discouraging information gathering which can result in a we-they confrontation and lack of trust. Although it is always possible that families will find information about magic cures, trainees should learn that discussing such issues is preferable to alienation that can lead to disengagement from conventional therapies entirely. 3) Many patients express anger and anxiety. Learning how to respond to negative or hopeless feelings is accomplished most effectively by observing others, including colleagues from psychology or child life, conduct a counseling session. A debriefing session to clarify any confusing communications or to explain communication techniques is essential. 4) Sometimes children ask if they are going to die. Trainees should understand that this question is the child's way of determining with whom it is safe to discuss concerns. An especially good response is “Tell me more about what you're thinking.” Excellent role modeling can be provided by skilled child life therapists adept at using play, music, and art to help the child share specific worries (”Is heaven nice?“ ”Who will feed my dog?“). As will become apparent to the students, frequently the child is actually seeking reassurance about continued support and comfort. Responses to questions about the future should never be flippant (“We all die sometime.”) Reassurances about not abandoning the child should be given with the clear intent to keep them faithfully.
Management of Pain and Other Symptoms
General Considerations. Two teaching points are critical: pain is a multifaceted experience influenced by emotional and contextual factors and the principles of symptom management apply to all children, regardless of prognosis. A mentored visit to a multidisciplinary clinic for children with cancer or acquired immunodeficiency syndrome is useful for illustrating that most pain associated with these chronic illnesses is actually the result of uncomfortable diagnostic or therapeutic procedures rather than the disease. As such, this pain is primarily preventable. Furthermore, there is increasing evidence that combining pharmacologic pain-reducing measures with psychologic measures which enhance personal coping skills is the safest and most effective approach to procedure-related pain.10 ,11 In this kind of synergistic effects model the amount of pharmacologic agent can be reduced, thus potentially reducing side effects and certainly reducing the cost of medications. On the other hand, teaching the child relaxation and other self-regulatory techniques takes time. Unless students are exposed to mentors who understand the value of such combined approaches, the lessons to be learned about teaching coping skills as part of performing the procedure itself are likely to be lost in the race to get the results, regardless of how the specimen is obtained.
Principles of Successful Symptom Management. Teaching about symptom management includes didactic presentations about the mechanisms of symptom formation, accurate assessment techniques, pharmacologic and nonpharmacologic treatments, and methods to address refractory symptoms.
It is important to point out to students that despite the availability of effective management strategies, optimal symptom control is rarely achieved because of misinformation and attitudinal biases. Thus, they are likely to encounter some caregivers who continue to believe that children, particularly infants, either do not feel or do not remember pain, despite substantial evidence attesting to pain perception even in utero,12 ,13 the durability of memories of pain, the safety of methods for prevention and alleviation, and most recently, the possible protective role of continuous low-dose analgesia on neurologic outcome in certain infants.14
Assessment of Pain. The gold-standard for pain assessment in verbal children, as in adults, is patient self-report. Students need to know that changes in pulse, blood pressure, other physiologic parameters, or facial expressions are unreliable indicators, particularly when the pain is chronic or the patient is critically ill. Keeping in mind that students remember best what they see in real life, it is essential to keep standardized instruments to assess pain readily available and to use them regularly. Developmentally appropriate assessment instruments include numeric scales (eg, 0–10, with 0 = no pain and 10 = the worst pain possible) for children 7 years and older and nonnumeric scales (eg, Bieri's Faces Scale15 [Fig 2]), for verbal children who have a developmental age from ∼3 to 7 years. Demonstrating the use of behavior observation instruments designed to assess pain in nonverbal or cognitively impaired children, such as the Children's Hospital of Eastern Ontario Pain Scale and the Pain Observation Scale,16 helps dispel myths about level of maturity or cognitive ability as limiting factors in pain perception.
Pharmacologic Management of Children's Pain. To demystify pain management, it is important that students realize that the basic principles of pharmacologic intervention for adults apply equally to children. A useful framework for analgesic therapy is provided by the World Health Organization analgesic ladder.17 It must be modified to include acetaminophen rather than nonsteroidal antiinflammatory agents which can aggravate the platelet dysfunction associated with cancer and acquired immunodeficiency syndrome.
Students should be especially aware that opioids are typically used to manage moderate to severe disease-related pain and that the incidence of opioid-induced respiratory depression in children >3 months is similar to the adult rate of 0.9%. For infants <6 months of age, dose adjustments and monitoring allow safe, effective pain management. Known potential side effects (eg, constipation, pruritus) should be anticipated and avoided if possible or treated promptly when they occur.
A curriculum for pediatric EOL care should address the following 10 issues associated with opioid therapy: 1) assessment of pain and monitoring of relief; 2) the differences between addiction (continual devious and dangerous drug seeking behavior) and physiologic dependence (the development of physiologic symptoms such as sweating or jitteriness attributable to too rapid discontinuation of medication) and tolerance (physiologic need for increased doses to achieve the same degree of pain relief because of receptor down-regulation); 3) prevention and management of opioid-induced side effects; 4) timing, route, agent, and dose appropriate for initiation of therapy; 5) scheduled (around-the-clock) and supplementary (breakthrough) dosing; 6) titration of medication to the point of symptom relief; 7) co-analgesic effects of agents usually prescribed for other symptoms (eg, anxiety, depression); 8) management of refractory pain, including ethical and legal considerations; 9) accessing consultants and resources; and 10) communicating with patients, families, and other health professionals about pain management.
Nonpharmacologic Pain Management. Nonpharmacologic approaches to pain management (eg, biofeedback, relaxation, music therapy) are typically underemphasized in EOL education despite many studies showing that these measures are effective.18 ,19Nonpharmacologic measures have the added benefit of providing the child with a sense of control20 and of mastery.21Included within the spectrum of combined pharmacologic/nonpharmacologic approaches is the use of patient-controlled analgesia (PCA) pumps to permit self-administration of a predetermined dose of analgesic at set intervals. Students should be made aware of the theoretical basis for the PCA approach as a method to enhance patient control through choice.
Because young children, in particular, report that having a parent with them is the most helpful pain management intervention, students should be prepared to offer parents ideas for activities which promote relaxation and distraction (eg, telling a favorite story, massage). The effective use of nonpharmacologic interventions requires demonstration and supervised practice. Child life therapists are especially adept at teaching these techniques.
Refractory Symptoms. The management of persistent pain or other symptoms may require terminal sedation (the use of sedation with the intent of achieving a state of unresponsiveness). Reaching this decision is difficult for everyone involved and it is common for students to be excluded from discussions about this issue. Including them, however, models how to elicit the honest feelings and opinions of the patient, the family, and the entire health-care team and how to reach consensus around a particularly sensitive and distressing issue.
Ethical Considerations in EOL Care
General Considerations. Consent for treatment is a vital ethical principle with special relevance to EOL care. Who should have authority to give or withhold consent is less clear-cut when the patient is a child than when the patient is a competent or oncecompetent adult. Reviewing the legal and ethical principles governing informed consent, coupled with real-life or case-based discussions about their merits and limitations, will increase student understanding of how to honor the patient's and family's right to exercise autonomy and self-determination in decision-making.22
Important principles which require clear presentation and recurring discussion include: 1) the legal right of parents or guardians to give or withhold consent for their child's treatment, whether it is curative, life-prolonging, or comfort care; 2)the circumstances (eg, National Institutes of Health research protocols) under which children as young as 7 years must either assent to (give agreement without legal standing) or refuse the treatment proposed; and 3) how status as a mature minor (a minor judged to have an adult understanding of his/her situation) or as an emancipated minor (a minor who is married or living independently) is determined and what effect this has on the decision-making process.23
Ethical Problems Unique to Pediatric EOL Care. Among the various ethical problems that arise with patients, the following 3 categories are highlighted here as examples of issues which are especially pertinent to the care of children with life-threatening conditions: 1) the patient's role in decision-making; 2) best interests; and 3) the determination of an appropriate course of care. In addressing these areas, the curriculum should build on ethical issues that relate generally to the special needs of the terminally ill, and then apply them specifically to children. This reinforces general concepts and identifies those areas that are affected by such patient characteristics as age and maturity. Instruction about ethical issues lends itself well to case analysis and to structured debate of provocative issues.
With respect to medical decision-making, it should be recalled for students that the child's degree of capacity is a deciding factor in ascertaining the degree of self-determination he or she might exercise in decision-making. Thus, it is encumbent on the physician to determine capacity, up to and including mature minor status.23Specific ethical questions in this area are:
What should the child's role in decision-making be?
How should capacity for assent be assessed?
Should a capable child's assent be a legal as well as ethical requirement?
Students should also be made aware of the many controversies surrounding best interests. For example, based on the assumption that parents always have the best interests of the child in mind, the legal authority for decision-making rests with the parent or guardian. Conflict may arise, however, when the child disagrees with the parent's or guardian's decisions or when the involved adults disagree with each other. Furthermore, the mere location of legal authority does not answer 2 fundamental questions: How should best interests be determined and Whose best interests should take ascendancy?
The medical obligation with regard to who makes decisions should be focused on ensuring that the child and family have respectful discussions. How to fulfill this obligation raises other ethical questions such as:
How should information be delivered to families to help them make their decisions?
Should information to families ever be restricted?
How should a child's beliefs and preferences be incorporated into decision-making (eg, should role be based on age, maturity, function, or type of decision)?
How can inadvertent coercion resulting from the child's need to please the parents and other adults be avoided?
Does authority for medical decision-making shift when experimental therapies are being proposed?
Under what circumstances should child protective services be consulted regarding decision-making?
The complexities of determining an appropriate course of care for dying children deserves ample attention. For example, because prognostication is an uncertain science, it is difficult to determine when a child is more likely to benefit from interventions that are solely palliative than from continued efforts to prolong life. Specific ethical questions to address include:
When should a child be considered terminally ill?
How should a prognosis of terminal illness affect the goals of a child's medical care?
How should the benefits and burdens of attempts to prolong life be calculated?
When should the decision be made to forgo further life-sustaining treatment?
Addressing Ethical Issues. Medical students and trainees are adult learners who already have well-developed belief systems. Some might question the usefulness of instruction in ethics at this point in the student's personal development. However, most trainees will be facing complex professional situations that are unfamiliar or that challenge their personal beliefs. In this context, ethics education can provide the substantive knowledge and analytical tools necessary to address potential dilemmas constructively and to assist in the continued evolution of the student's character and beliefs.24 ,25
Instructional techniques that are especially useful include reviewing personal values and how they were formed; comparing and contrasting a variety of theoretical frameworks which describe decision-making processes; and learning to analyze landmark cases such as Baby Doe and Baby K and the intended and unintended consequences of the solutions over time.
Keeping a journal of patient care experiences increases a student's awareness of personal values and beliefs and how these affect giving information and making recommendations. Videotaping an encounter with a standardized patient graphically illustrates how prosody and nonverbal cues color actual content. These self-discovery methods also help students prospectively identify situations in which they are likely to feel uncomfortable because patient beliefs will differ from their own, and to consider strategies to reduce conflict.
Caregiver Responses in EOL Care
General Considerations. As students progress through various clinical rotations, it is essential to acknowledge that all deaths provoke some kind of professional emotional response, which may be positive (“We did everything we could”) or negative (“I should have done X”). The death of a child, however, is more likely than the death of an adult to provoke particular feelings of powerlessness, unfairness, and personal vulnerability. In part, these feelings stem from the tendency of people in developed nations to view children as having a right to attain adulthood and to fulfill the expectation for generational sequence.7 In addition, the pediatrician's specific orientation toward new, growing, and developing life can make managing a child's death especially emotionally difficult.26
Instructional materials designed to teach about caregiver responses are likely to be most effective if they are constructed around a blend of cognitive and affective approaches. One particularly useful approach is to present various professional dilemmas physicians face, develop multiple solutions with rationales, and then analyze how both conscious and unconscious motivations underlie the actions the physician is most likely to take.
It is important that students understand that how they resolve the dilemma is less important than identifying competing needs and weighing costs and benefits. Although there is likely to be initial resistance to such self-reflection, over-arching themes should include the reality that physicians experience distress and the use of self-protective mechanisms can be legitimate if they are not harmful to the patient.
Examples of Physician Dilemmas: Disclosure or Nondisclosure? This is the telling dilemma. This situation is analogous to parents' reluctance to disclose. Understanding the issue as not only parental but also professional helps the student identify the emotional triggers that make information giving, usually a desirable activity, something they wish to avoid when the news is bad. Analyzing this dilemma in terms of ostensible and hidden motivations posed as questions is a useful educational strategy. For example, in this situation, the ostensible question the physician poses to himself or herself is whether or not it is better to protect the child by withholding information about a serious diagnosis. In fact, however, the more likely question is how will I, as the physician, cope with the child's tears, anxiety, and fear? Or, what do I say if the child asks, “Am I going to die?” Students need to be made aware that, whatever the reasons for not telling, nondisclosure leads to feelings of isolation and abandonment in the patient. Because there is a “secret” that everyone knows but the child, it becomes impossible to have honest discussions about hope, sadness, fear, or separation. In trying to avoid a moment of exquisite but relatively brief discomfort that the physician might experience if the child becomes disconsolate, the physician actually risks depriving himself or herself of experiencing the personal and professional satisfaction of doing everything, including providing profound comfort. Having the experience of disclosing through role play or a standardized patient, will make the trainee a more sensitive counselor to parents faced with the same dilemma.
Optimize or Minimize the Physician's Role in EOL Care? The ostensible question is, is it better for the patient if I delegate all terminal care to family or counselors? In fact, however, the more likely question is, what role is there for me if I can't offer hope of cure? Visits to patients in hospice or other EOL care settings can demonstrate to students that it is not the patient who wonders what role the physician is playing but rather physicians themselves who feel as if they have no tasks to perform. In fact, patients feel abandoned and hopeless when physicians stop being actively involved in their care. Modeling how to ease pain, show caring, offer encouragement, praise strength, urge closure, and listen to fears provides students with an understanding of what EOL functions physicians can assume. Thus making such visits and using the time to define the physician's role not only provides students with direct intimate experience with dying patients, but also sends the clear message that physicians can help patients to achieve good quality of life and peace of mind despite a terminal prognosis.27 If physicians do not demonstrate pride in what they are able to accomplish at this juncture of a patient's life, EOL care will continue to be undervalued within the practice of medicine.
Acknowledge or Withhold Feelings? The ostensible question is, is it professionally appropriate to acknowledge feelings of anger, hopelessness, sorrow, burnout, or even relief when a child dies?27 ,28 In fact, however, the more likely question is will families or colleagues view me as weak or vulnerable if I express such human emotions? Modern society still retains vestiges of special deference to physicians especially at times of serious illness. Although students and trainees must understand the gravity of their commitment to patients, they must also understand that their humanness is a vital part of the doctor-patient-family relationship. An integral element of the student's socialization into medicine is frank discussions about why and when certain emotion-based behaviors are or are not acceptable. Such guidelines can allay fears of loss of self-control that result in behaviors patients misinterpret as aloofness or lack of caring.
Skill-building exercises provide the opportunity to perform a task in a safe environment such as with a standardized patient or in role play. Topics important to identifying and relieving physician caregiver distress range from increasing the learner's understanding of the meaning of death to the physician as healer and how feelings of frustration or loss can be expressed, to fostering the fundamental skill of listening: being attentive and able to concentrate within the clinical interaction. These skills operate at both cognitive and emotional levels to address the personal issues providers face in ministering to patients who are not responding to curative intervention. Listening is a particularly difficult skill to acquire because it demands laying aside personal anxiety about what questions the patient or family will ask, what blame they will assign, and personal preoccupations with what other curative or life-prolonging measures could have been taken had the physician been infallible. Structured instruction in listening skills is provided through programs such as “conscious living/conscious dying”29 or “attentional training.”30 These programs have 2 purposes: 1) reconciling health professionals to their personal issues about death and loss; and 2) helping them become better listeners, better managers of their emotions, and more inventive clinicians in approaching EOL care.
In the later phases of professional development, peer groups can replace supervised groups. In fact, experiencing the benefits of such collegial interactions early in training can lead to career-long participation in formal or informal peer support groups.
TARGETED INSTITUTIONAL CHANGE
Developing Experience and Expertise
Effective teaching about EOL care requires faculty development. Especially important groups from which to draw teachers are clinicians with extensive experience in high-risk situations (eg, neonatologists, critical care specialists, oncologists). Given the urgent and complicated medical care typically provided by such physicians, faculty training should focus on efficient as well as effective use of time and resources, including other health providers. Most often, good instruction relies more on purposefully incorporating the student into activities the physician already performs than on developing new curriculum. For example, inviting students or trainees to observe delivering bad news, to attend a wake or funeral, or to listen in when a follow-up phone call is made to a bereaved family. These real-life experiences, although sometimes psychologically draining, are prime opportunities for trainees to learn through guided observation and participation in activities that must occur anyway. Clinicians who take advantage of the educational value inherent in these experiences are the best role models to train the next generation of pediatricians who will, in turn, train others.
Harnessing the Interdisciplinary Team
Understanding the multiple facets of a child's and family's questions and concerns, and the meanings they attach to suffering and loss helps a trainee gain a richer perspective of their illness experience than the physiologic one alone. Because learning about EOL care is best achieved through experience, some programs pair a terminally-ill child with a student who can then follow the family into bereavement. Observing the longitudinal care provided by an interdisciplinary team gives trainees an appreciation of the scope of interventions provided by nurses, social workers, child life specialists, psychologists, chaplains, and other parents and children. In this context, palliative care can serve as a particularly vivid example of integrated patient care.
Changing the Hidden Message
Having the time and resources necessary to process the events around a patient's death requires an institutional commitment to the importance of teaching about EOL care. Conducting a staff debriefing after a death, allotting time to attend a wake or funeral, acknowledging feelings of sadness and loss, and providing sensitive responses to questions the trainee may raise about personal competence are all critical. Providing time in the curriculum for presentation of how children understand death and how to elicit and maintain an appropriate response to feelings is essential to the balance between cognitive process and emotional response.
Encouraging faculty role models to directly and purposefully include trainees in bedside visits and family meetings is essential to reforming the informal or hidden curriculum.31 ,32 This phenomenon, which is well described by “Do as I do, not as I say,” highlights the conflicts students and trainees encounter when confronted by the inconsistencies between the written curriculum and the actual curriculum provided by supervisors and role models. For example, despite overt institutional endorsement of the importance of providing and processing EOL care, the covert message typically not only dismisses the importance of physician participation in EOL care (“Don't bother them now, she's dying”), but also gives priority to organizational rather than individual needs (“You don't have time to feel bad, you have to write progress notes”). Striking a balance between the needs of the student as a person and the needs of the institution as a health care delivery system is key to accomplishing all of the medical service and all of the emotional work that must be done.33 Achieving this balance requires a major change in how the service provider versus learner role of the student trainee is viewed.
We recognize that the curriculum is over full and have prioritized several issues which are particularly relevant to children, whether terminally ill or not. For example, the grave illness of a child provides a context for understanding human emotion, the death of a child provides an opportunity to experience how the sociocultural milieu of the family gives perspective to life and death, and longer term follow-up helps the student identify how ongoing support systems facilitate resolution. In addition, these experiences help students and trainees learn about themselves in their role as physicians.
Effective teaching about EOL care does not require the invention of an entirely new curriculum, but rather taking better advantage of the many teachable moments that are already available. That is, EOL teaching need not be costly in either time or resources. It does, however, require an explicit commitment to the value of understanding terminal illness and death as part of the continuum of life, to emphasizing the critical role of medicine in alleviating pain and suffering, and to acknowledging how emotionally difficult yet professionally satisfying it can be to assist a child and family through this experience. Some may believe these issues are already covered adequately in various existing segments of the curriculum. In actuality, however, such instruction is meager.34 It is our contention that more systematic and explicit instruction which capitalizes on EOL experiences occurring around the students almost daily will enhance not only the lives of our patients but those of our developing physicians as well.
Teaching about pediatric EOL care benefits students and trainees who use the principles they learn to develop a greater awareness of their own humanism and professional competence even in the face of inevitable death. As importantly, such teaching benefits the well-being of the patients and families our trainees encounter. Fundamental changes in current attitudes regarding instruction about EOL care are needed to achieve these goals. These include encouraging students to participate in the care of dying children; providing opportunities for reflection and open discussion; and making curricular time available to present information and insight into how best to treat the physiologic and psychologic manifestations of terminal illness.
Providing good EOL care is emotionally challenging. Resolution of feelings about death and loss requires time, support, and training. Both health care professionals and patients will benefit from better communication, education, and support services. Achieving consistently good care of dying children requires additional research, educational reform, and change in clinical practice. Both research and practice are informed by education, which, of all the variables influencing EOL care, is the one requiring the least resources and over which we have the greatest and most immediate control. Has the time not come for us to address this issue more effectively than we have in the past?
Support for the National Consensus Conference on Medical Education for Care Near the End-of-Life was provided by the Open Society Institute's Project Death in America and by the Robert Wood Johnson Foundation (Grant 029360). Drs Frager, Levetown, and Lipson are Faculty Scholars in the Open Society Institute's Project Death in America.
We thank Barbara Koenig, PhD, of the Center for Biomedical Ethics, Stanford University, who participated in conference deliberations and played an invaluable organizing role in the development of this report. We also thank David Barnard, PhD, for his careful review and invaluable advice throughout several drafts of the report, and J. Andrew Billings, MD, and Susan D. Block, MD, who convened the Conference and provided editorial suggestions.
- Received July 30, 1998.
- Accepted September 3, 1999.
- Address correspondence to Olle Jane Z. Sahler, MD, Departments of Pediatrics, Psychiatry, Medical Humanities, and Oncology, University of Rochester Medical Center, 601 Elmwood Ave, Rochester, NY 14642-8777. E-mail:
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