CHAPTER 4
COMMUNICATION, GOAL SETTING, AND CARE PLANNING

It was terribly important for us to do exactly what was right and necessary to help our daughter. . . . Our nurse and social worker made us feel that we WERE, in fact, doing everything in our power to take care of our daughter.

Kathleen and James Bula, parents, 2001

When you first get sick, you have to live.

Katherine, 19-year-old with cancer (Sourkes, 1982, p. 112)

Except when death comes suddenly and without forewarning, physicians, nurses, social workers and other health care personnel—as well as hospitals and other health care institutions—play a central, even overwhelming, role in the lives of children with fatal or potentially fatal conditions and their families. When a child dies without forewarning, a family’s encounter with medical personnel may be relatively brief but still have a profound and enduring impact.

As noted in Chapter 1, these professionals can at best help all involved to feel that they did everything they could to help, and that preventable suffering was indeed prevented. Other times, however, families’ encounters with the health care system will leave them with painful memories of their child’s unnecessary suffering, bitter recollections of careless and wounding words, and lifelong regrets about their own choices. In between these poles of medicine, families will often experience both excellent care and incompetence, attentiveness and neglect, and inconsistent communication of essential information.



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CHAPTER 4 COMMUNICATION, GOAL SETTING, AND CARE PLANNING It was terribly important for us to do exactly what was right and necessary to help our daughter. . . . Our nurse and social worker made us feel that we WERE, in fact, doing everything in our power to take care of our daughter. Kathleen and James Bula, parents, 2001 When you first get sick, you have to live. Katherine, 19-year-old with cancer (Sourkes, 1982, p. 112) Except when death comes suddenly and without forewarning, physicians, nurses, social workers and other health care personnel—as well as hospitals and other health care institutions—play a central, even overwhelming, role in the lives of children with fatal or potentially fatal conditions and their families. When a child dies without forewarning, a family’s encounter with medical personnel may be relatively brief but still have a profound and enduring impact. As noted in Chapter 1, these professionals can at best help all involved to feel that they did everything they could to help, and that preventable suffering was indeed prevented. Other times, however, families’ encounters with the health care system will leave them with painful memories of their child’s unnecessary suffering, bitter recollections of careless and wounding words, and lifelong regrets about their own choices. In between these poles of medicine, families will often experience both excellent care and incompetence, attentiveness and neglect, and inconsistent communication of essential information.

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Moving the typical experience of children and families toward the best care and entirely eliminating the worst care is an achievable goal. It is a goal that will depend on shifts in attitudes, policies, and practices involving not only health care professionals but also those who manage, finance, and regulate health care. That is, it will require system changes not just individual changes. Child- and family-centered palliative and end-of-life care has many dimensions. One way to understand these dimensions is to view them, in a sense, as responses to families’ fundamental questions and concerns following the diagnosis of child’s life-threatening medical condition. “What is happening to me?” “What is happening with my child?” Good palliative, end-of-life, and bereavement care supports children and families with accurate, clear, and timely information about the child’s condition and prognosis from the time of diagnosis through death and into bereavement—if death is the outcome. “What are our choices? How can we be good parents?” Following diagnosis, child- and family-centered care provides full, understandable, and timely information about curative, life-prolonging, and palliative treatment options that includes descriptions of potential harms or burdens as well as potential benefits of treatments. A central goal is to help the child and family to develop and adjust medical and personal goals based on their values and preferences as well as on medical and other circumstances. “How will you help us?” Appropriate palliative and end-of-life care offers a plan of physical, psychological, spiritual, and practical support that is adapted to the goals, values, and circumstances of each child and family. It is always appropriate for a child’s plan of care to include such support while curative or life-prolonging therapies are pursued. The rest of this chapter is organized primarily around these questions. The chapter tends to emphasize the role of the physician as diagnostician and communicator and as the ultimate locus of professional accountability for a child’s care, particularly in the hospital. The discussion in Chapters 5 and 6 should, however, make clear that all members of the health care team—nurses, social workers, psychologists, child-life specialists, hospice personnel, and others—have specialized skills that are essential to comprehensive palliative, end-of-life, and bereavement care, including effective communication. Such communication is especially important because parents may simultaneously hold multiple, possibly conflicting, goals that complicate decisionmaking. On the one hand, they may be profoundly reluctant to accept that their child will die, may need to feel that they have tried every option that might save their child, and may resist or resent certain offers of

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support (e.g., referral to hospice). One the other hand, parents naturally want to protect their child from pain and other suffering. Empathetic listening by members of the child’s care team may help all involved to clarify their understanding of the child’s medical situation, assess the goals of care, and fashion a care plan that reflects both medical realities and family priorities. WHAT IS HAPPENING? DETERMINING AND COMMUNICATING DIAGNOSIS AND PROGNOSIS “What is happening to me? How bad is it?” “What is happening to my child? Could she die?” General pediatricians and family practitioners may face such questions from children and families, but only infrequently are they the ones who bring the definitive word that a child has a fatal or potentially fatal condition. In contrast, many pediatric specialists, including emergency medicine physicians, neonatologists, intensivists, oncologists, and neurologists, among others, must frequently, if not daily, inform families of a child’s life-threatening condition. They may nonetheless be inadequately prepared to tell families honestly but compassionately what they need to know to make decisions and plan for the future. As described in Chapter 3, they may also so dread the delivery of such information that they fail to provide families with a complete, accurate, and timely picture of a child’s diagnosis and prognosis. In addition, despite their considerable experience, they may not appreciate sufficiently the limits on how much bad news and how much complicated information people can absorb at one time. Determining diagnosis and prognosis and then fully and sensitively informing patients and families require not only technical and intellectual skills but also empathy, education, experience, teamwork, time, and reflection. To be done consistently, it also requires supportive administrative systems (e.g., protocols, checklists, model conversation guides) and financing policies that appropriately value careful communication. Diagnosing Life-Threatening and Fatal Conditions in Children Aspects of Diagnosis in Children Often, parents are the first to realize that something is not quite right with their child. For infants, the parents may recognize that their son or daughter is not achieving the expected developmental milestones—for example, raising his or her head, turning over, “cooing,” or sitting. For older children, persistent reports or signs of fatigue may prompt a trip with

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worried parents to the pediatrician or family practitioner. This initial visit may then escalate into a nerve-wracking and protracted series of specialist consultations and tests to establish diagnosis and prognosis. Sometimes, a critical problem is quite evident from the start, for example, when a child is badly injured as described in the vignette about “Jimmy Marshall” in Chapter 3. In such situations, a rapid series of assessments may begin with the first-response emergency personnel and continue into the emergency department, operating room, and intensive care unit. Family members may also be seriously injured or not yet located. The unavailability of a parent sometimes complicates diagnosis, for example, if a child seems to be suffering an allergic reaction to an unknown substance and is unconscious or too young to provide relevant medical history. The technical aspects of establishing a diagnosis of cancer or heart disease may be similar in many respects for adults and children. Young children, however, present special challenges to the extent that they cannot report symptoms reliably or follow instructions (e.g., to swallow or stay still at a particular point) during diagnostic procedures. Cognitively impaired individuals of any age may present similar difficulties. In addition, diagnosing or ruling out a serious illness frequently involves painful or frightening procedures such as surgical biopsies and certain radiological examinations. Although older children and adults may also be unnerved by medical settings, young children are more likely to be upset by strange surroundings and large numbers of unfamiliar people. Child-friendly environments and special pediatric protocols, equipment, and personnel should help prevent or minimize children’s pain and fear, but a young child’s cooperation with diagnostic procedures may still be unpredictable. Relatively recent technological developments that allow many fatal conditions to be diagnosed prenatally have extended the point of diagnosis sometimes months before birth. When a potentially fatal problem is identified by ultrasound, amniocentesis, or other means, an obstetrician has the difficult task of informing the parents and helping them to consider their choices. As described in the vignette about the “Rileys” in Chapter 3, perinatal hospice care is an option in some locales for parents who wish to continue the pregnancy. Whether identified before or after birth, certain diagnoses will also raise genetic concerns and should usually prompt a referral to a genetic counselor who can assist families in understanding and evaluating their situation. Support for Children and Families While a Diagnosis Is Being Established Frequently, parents and child patients must wait through a period of frustrating uncertainty—a diagnostic limbo—that is filled with great anxi-

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ety, hope, fear, and even grief as they anticipate the possible loss of cherished expectations for the future. Even when the basic message is “we don’t yet know what’s wrong,” emotional support and careful and compassionate communication with parents and children are important. Parents may craft terrifying images of future possibilities until the facts are available. To support parents, clinicians may also have to manage their own frustration when a diagnosis is uncertain. A relatively large number of rare and often or always fatal childhood disorders first reveal themselves—particularly in infants—with nonspecific signs and symptoms. Only as the child develops or the illness progresses does clearer evidence of a particular disorder become apparent. This can be frustrating for parents, who may feel that their concerns are being downplayed or ignored (NORD, 2001). Specifically identifying rare conditions can require extensive testing and may take years. According to a 1989 report to Congress, establishing a firm diagnosis took more than six years in 15 percent of individuals with rare conditions, and for almost one-third, it took more than a year (NCOD, 1989). Sometimes a child’s exact diagnosis remains in doubt, for example, if too little information from family history or from other reported cases is available to establish the significance of a diagnostic finding, such as a genetic mutation. This can cause parents even greater anxiety, especially if they would like to have more children. Diagnostic uncertainty does not, however, necessarily affect medical management. Pursuing diagnostic clarity for its own sake may be costly, inappropriately expose children to testing risks, and subject parents to needless stress. In addition to information and emotional support, families seeking a diagnosis for their child’s problem usually can use extra assistance in navigating the health care system. Even within relatively integrated health systems, processes for coordinating multiple specialists and diagnostic procedures and their subsequent reports can be complex and imperfect. Delays and mix-ups can add considerably to the strain on children and parents, especially when the child and family have traveled far from home and their normal sources of emotional and practical support. Social workers can be helpful but typically become most involved only after a child is diagnosed. Information Resources Beyond the Health Care Team This chapter emphasizes information provided by the child’s health care team. In reality, once they learn a child’s diagnosis, many families engage in an intensive search for additional information from other sources including relatives, friends, advocacy groups, newspapers, books, magazines, and the Internet. Although not a substitute for information from

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clinicians, these resources do help many parents better understand their child’s condition, their options, the questions they should ask, and the kind of responses they should expect. Unfortunately, information from these other sources may be inaccurate or misleading. For example, press releases and media coverage of research developments may overstate preliminary findings and more generally create unrealistic hopes of cure or life prolongation. Such overstatements may, in turn, contribute to resistance by parents to some forms of palliative care or lead to requests for ineffective and even harmful treatments that adults might reject for themselves. To identify misunderstandings and misinformation (whatever the explanation), physicians may find it useful to ask parents what they understand of their child’s situation. One increasingly important source of information for parents, indeed all those with medical questions and concerns, is the Internet. The Internet also provides an electronic social support network for many patients and families facing serious medical problems. For example, several sites offer parent-to-parent support for families who have experienced a fetal death (stillbirth) or an infant’s death from extreme prematurity or severe congenital anomalies. Sites that provide support and information for families whose child has or had a rare disorder may be especially welcome. Little research charts how parents (or ill children or their siblings) locate or use Internet-based information, how their use varies during the course of a child’s illness, or how the information influences their knowledge, attitudes, or actions. A recent survey found that 62 percent of those who used the Internet reported using it to locate health information, and over 90 percent of that group reported searching for information about a specific illness or condition, often someone else’s (Fox and Rainie, 2002). The survey also found that most such users (about three-quarters) did not follow strategies that experts advise for checking a health site’s sponsor, noting the date of the information, and taking sufficient time with their information search. Other studies suggest that what consumers find on the Internet (and in books and other traditional sources) is of widely varying quality and value (see, e.g., Jadad and Gagliardi, 1998; McLeod, 1998; Eysenbach and Diepgen, 1999; Peroutka, 2000; APHA, 2001; Dyer, 2001; Li et al., 2001). Some well-managed sites include much carefully reviewed and thoughtfully presented information. Other sites provide information that is inadequately screened, misleading, inaccurate, incomplete, difficult to locate, poorly organized, outdated, or produced by groups with economic interests that could compromise the information provided. Physicians, social workers, and others advising families should review sites for clinical content and emotional tone before recommending sites, especially sites not associated with reputable governmental, professional, or other organizations.

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Economic and educational disparities limit the reach of the Internet and other information resources to many patients and families. Health information, in general, tends to require high-level reading skills, even when it is intended for patients or consumers rather than health professionals (Berland et al., 2001). In addition, both before and after diagnosis, parents may find the information on the Internet overwhelming in both its volume and its content. Material intended for clinicians but available to everyone may be not only highly technical but also alarming in its specifics. Personal stories and photographs may likewise be frightening in their individual details and in their number and diversity. For example, after the birth of a very premature infant, one mother featured in an article in a major medical journal said she found the “horror stories” on the Internet so difficult that she promised herself not to read any more and to rely “more or less” on her baby’s doctors and nurses for information (Richardson, 2001, p. 1504). Again, a child’s care team may help guide parents to good sites. The Internet can be more than a resource for general information and for parent-to-parent support. It is also being incorporated in telemedicine applications that support home health care for patients with life-threatening medical problems (see, e.g., Gray et al., 2000; Hersh et al., 2001; Starren et al., 2002). Chapter 6 briefly discusses some uses of telemedicine. Prognosis: What to Expect Given the Diagnosis of a Potentially Fatal Medical Condition Sometimes expectations for a child are clear at the time of the initial diagnosis. Certain kinds of congenital anomalies such as anencephaly are invariably fatal, although some infants may survive substantially longer than usual—dying after months rather than weeks or days. For other conditions, once an initial diagnosis is made, additional tests or waiting periods may be necessary to assess the condition’s severity, the child’s prospects for survival, and the implications for the child’s and the family’s quality of life. Unless death comes quickly, for example, following severe injuries in a motor vehicle crash, assessment of prognosis is usually not a one-time event but a process of periodic reevaluation and discussion as time passes, as further testing occurs, and as curative or life-prolonging treatments are tried. For example, children whose leukemia recurs while they are on therapy have a less favorable prognosis than those with recurrence after treatment has ended. Importance of Prognostic Information When a child is diagnosed with a potentially fatal medical condition, families need information about the probable course of the condition—

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including possible life expectancy and physical or mental consequences and the expected effects of treatments. The uncertainty associated with the information also should be acknowledged. Full diagnostic and prognostic information may influence not only medical decisions but also other choices (Miller et al., 1998). For example, parents given accurate information about their child’s fatal or potentially fatal medical condition may decide that it is prudent to put off the purchase of a new house or rethink a job change that would reduce family income, jeopardize health insurance, or require extensive travel. Others, if finances and the child’s condition allow, may decide to take a family “dream” vacation sooner rather than later based on what they have learned. If they have a timely and full explanation of what to expect, parents may act earlier to enlist support from other family members and friends, work with teachers to create a supportive environment for the ill child and any siblings, marshal spiritual resources, and otherwise seek help to sustain them in the difficult times ahead. Likewise, if responses to therapy and the passage of time shift expectations for a child’s survival and quality of life from favorable to grim, parents who are given sensitive but full information and counseling can be helped to prepare for their child’s death, even if they also choose to continue experimental or other therapies. Conversely, overly optimistic assessments by physicians can deny patients and families opportunities to prepare for death and say their good-byes. It can also contribute to avoidable suffering if inadequately informed families choose burdensome treatments that will not benefit their child. Chapter 3 reviewed some research suggesting discrepancies in physician and family assessments of prognosis. More research is needed on the causes and consequences of such differences. Possible causes include individual characteristics (e.g., styles of communication related to education or cultural background) and organizational or system factors (e.g., lack of protocols for communicating with families, poor training of health professionals). Prognostic Uncertainty As noted in Chapter 1, determination of prognosis is not a precise science. A number of analyses have described the limitations of quantitative and qualitative prognostic determinations for adult patients (see, e.g., Thibault, 1994, 1997; Lemeshow et al., 1995; Lynn et al., 1995; SUPPORT, 1995; Sherck and Shatney, 1996; Lynn et al., 1997; Christakis and Iwashyna, 1998; see also Appendix B). Determining prognosis for children can be even more difficult because the number of deaths is much smaller and because children’s deaths from illness are somewhat less concentrated than adults in a few major diagnoses (see Chapter 2). As a result, large

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databases for reliable statistical analysis of survival patterns are less available and more expensive to accumulate. For very rare conditions, even qualitative accounts of clinical experience are limited. For instance, certain neurological and metabolic disorders are so uncommon that pediatricians and family practitioners have little experience or information to use in advising families about the future course of the disease or life expectancy. They must rely on their clinical judgment and careful monitoring of a child’s development, responses to treatment, and complications to provide parents with their best sense of the child’s condition and future course. Many progressive conditions have a highly variable course in children, but the reasons for this variability are not well understood. For example, research has only partly documented genetic and other factors (e.g., seizures, age at diagnosis) that put children with neurological disorders at higher risk of serious physical disability or early mortality. Similarly, researchers have undoubtedly identified only a small subset of genetic features that affect the likelihood of treatment success for various childhood cancers. Relapsed cancers are clearly harder to cure, but at the time that a relapse is diagnosed, it is not now possible to identify the children likely to be in the small group of survivors. This adds to the impetus to continue curative efforts. Further, the same condition may follow a different course in children and adults, and a treatment may vary in effectiveness and unwanted side effects depending on the patient’s age. For example, the National Cancer Institute presents advice separately for adult and childhood acute lymphoblastic leukemia (NCI, 2001a). To cite just one of many other examples, although tacrolimus has proved a generally effective immunosuppressive drug for adults who have undergone transplantation, some research suggests that children may respond less favorably (MacFarlane et al., 2001). Such differences underscore the importance of drug testing to establish pediatric dosing information (see Chapter 10). Prognostic uncertainty may have limited practical consequences in some situations. Other times, however, it can be very consequential. As discussed in Chapter 6, for a patient covered by Medicaid or Medicare, eligibility for hospice benefits is contingent on certification by a patient’s doctor and the hospice medical director that the person is terminally ill and has a life expectancy of six months or less if the disease has a “normal” course. Patients (or their surrogate decisionmakers) are also required to consent to forgo curative or life-prolonging treatments. These rules limit the ability of hospices to serve substantial numbers of adult Medicaid patients who have conditions such as congestive heart failure for which prediction of remaining life expectancy is particularly difficult and for which medical interventions during crises can add months or even years of life (Lynn and O’Mara,

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2001). To the extent that determining prognosis is more difficult and uncertain in children, the rules put Medicaid-covered children and their families at a particular disadvantage if they desire assistance from a hospice. As discussed in Appendix B, researchers have developed statistical models to assess illness or condition severity for critically ill children and to estimate their risk of death or other outcomes. The value and limitations of these models continue to be evaluated. For example, one recent study of prognosis in a neonatal intensive care unit concluded that—contrary to expectations—accuracy in predicting survival using either a statistical tool or clinical intuition did not improve with time. Instead, “most infants who die after the first few days . . . . seem to ‘cloak themselves;’ their ultimate demise becoming less apparent with each succeeding NICU day” (Meadow et al., 2002, p. 884). In general, prognostic models and tools tend to be more useful for some purposes such as health services management, quality assessment, and research but less so for other purposes such as guiding decisions about life-sustaining medical interventions for individual patients. Communicating Bad News Every word that was said the day Becky died is indelibly etched in my mind. I have replayed the words in my mind a million times. It’s a never-ending tape. Pam Borchart, parent (Maruyama, 1997) Physicians usually will have the difficult task of telling parents what they cannot bear to hear—that their child’s life is in jeopardy or that their child has died. Sometimes, as in the emergency department, physicians will be informing people they have never met before. Likewise, with a dying newborn, the neonatologist and the family may be strangers. At other times, for example, when tests show that a child’s cancer has returned, physicians will be informing families they have known for the months or years of the child’s illness. In some instances, the news of a child’s death may come from an inexperienced resident who happens to be on duty in the intensive care unit but who has had no relationship with the family. When a child has been injured away from home and taken to a hospital emergency department, a social worker usually serves as the communication and interpretive link between the parent and the team or teams working to save the child. Physicians may make briefer appearances to discuss tests, treatments, prognosis, and decisions. (See the vignette about the Marshall family in Chapter 3.) Nurses rarely take the lead in presenting bad news in either emergency or other situations, but they may help identify situations in which there is a mismatch between a child’s condition and a parent’s understanding of that condition. When there has been an emer-

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gency outside the hospital, parents may seek information from paramedics or police officers at the scene. In certain jurisdictions, death cannot be declared outside a hospital or other medical facility, and paramedics may not be permitted—or prepared—to inform parents of their child’s status (Iverson, 1999). These limits do not, however, make good communication skills and sensitivity irrelevant. Communication guidelines or protocols for emergency personnel should cover situations involving both the provision and the withholding of information, including when circumstances may require a police investigation. Although it seems reasonable that training and experience should improve clinicians’ comfort and facility in communicating about life-threatening medical problems and about death, research is limited. Vazirani and colleagues (2000) concluded from a longitudinal study at one institution that pediatric residents became more comfortable with issues of death and dying over the course of their residency. At the same time, they became less comfortable with pain management out of concern that it might hasten death. As discussed further in Chapter 8, education about this and other dimensions of palliative, end-of-life, and bereavement care is limited at all levels of pediatrics training. Most discussions about breaking bad news focus on adult patients and on families of adult or child patients. The following sections consider conversations with parents and with ill children themselves. One theme is that it is important—from the outset—to consider what, when, and how to communicate with the child patient. Depending on a child’s cognitive and emotional development and preferences, the child may or may not be included in the initial discussion. Talking with Parents Things that are said at that time you remember forever. Maruyama, 1997 Parents have tried to describe the impact of learning that that their child’s life was in jeopardy. “Nothing in this new world makes sense. . . . In such insanity, you are dumbstruck.” (as quoted in Finkbeiner, 1998, p. 5). “I don’t think you understand anything until a few months go by. Maybe more than a few months” (as quoted in Finkbeiner, 1998, p.2). Even sensitive and otherwise capable clinicians may not realize how difficult it can be for a shocked, fearful parent to absorb information. Incorrect assumptions about what parents understand, especially during a single conversation, can create confusion and distress later. If news is presented poorly, parents may recall the additional pain and, often, anger for years afterward. Personal accounts and some research suggest that physi-

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with family members, or completed advance directives or medical power-of-attorney documents (see, e.g., SUPPORT, 1995; Grimaldo et al., 2001; Wenger et al., 2001). In any case, recommendations and suggestions for competent adults have only limited direct relevance for children and their families for various reasons. Except for children judged to be mature or emancipated minors (see Chapter 8), parents have the legal authority to make the medical decisions for their child, including decisions about end-of-life care, although they are often unwilling to face such decisions until the child is very near death. Children may be involved in discussions about their concerns and wishes, but their preferences about treatments will prevail only if their parents agree. As discussed in Chapter 3, many serious illnesses in childhood run an unpredictable course of relapses and remissions, with acute events that can often be reversed for a period. Modern medical technology continues to advance and therapies that were seen as heroic just a decade ago are now considered standards of practice, such as bone marrow transplantation for relapsed leukemia or cardiac transplantation for certain heart conditions. Even when the prognosis with treatment is grim, children, families, and clinicians can postpone acknowledging an approaching death as they focus on potentially life-sustaining therapies (Goldman, 1999). Consideration of goals for life’s ending and preparation for death involves much more than signing (or not signing) orders about cardiopulmonary resuscitation and other life-support measures. It also provides the opportunity for families to think about how to make the most of their remaining time together, particularly when it is clear that time will be short. Planning for this time can even provide parents some comfort as they anticipate and grieve in advance for their child’s death. Attention to goals and choices in advance of an expected death can also help families reduce the possibility of certain distressing experiences, including unwanted interventions and even legal inquiries. For example, if an ill child dies a planned death at home and the plan explicitly provides for families to manage with no call to 9-1-1 or no race to the hospital (but with the child’s care team available for consultation and support), parents may be protected by having a written do-not-resuscitate (DNR) order in their possession,3 by having alternatives arranged in case their child’s physician cannot come to the home to pronounce death, and possibly—even if the child is not under hospice care—by calling the local hospice for advice about local law enforcement practices and expectations. (Although specific 3   Because success rates for resuscitation in these situations are very low, DNRs are sometimes called DNAR or “do not attempt resuscitation” orders or AND “allow natural death” orders (see, e.g., Crimmins, 1993).

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requirements vary, unexpected child deaths must generally be reported to the medical examiners office.) Misunderstandings about the circumstances of a child’s death can add to a family’s suffering (Rosauer, 1999; Avila, 2001). Little has been written to advise either physicians or parents on advance care planning as it may be relevant for children with life-threatening medical conditions (Hilden et al., 2001a,b; Hilden et al., 2000c). Instead, attention has focused more on clinical and ethical aspects of withholding life-sustaining interventions for children than on the goals of care and the role of palliative measures in meeting those goals (see, e.g., Lantos, et al., 1994; AAP, 1994b, 1996; Levetown, 2001). In addition to continued discussion of ethical issues, more needs to be known about variations in parents’ responses and decisions when physicians have begun discussions about DNR orders, hospice, and other end-of-life choices. Such knowledge may help guide physicians who believe that continued chemotherapy or other treatments are causing the child suffering without prospect of benefit but who feel they have not been able to communicate this effectively but compassionately to parents who want to continue such treatments. This is not to imply the parents are making “bad” choices but rather to recognize that physicians’ primary obligation is to advocate for what they believe is best for their patient. Barriers to Considering Palliative Care and Advance Care Planning Successful integration of palliative care perspectives following diagnosis means finding sensitive ways of providing parents—whatever their values and background—with timely and appropriate information about palliative care options and then encouraging their timely consideration of these options and the goals of care. Some options, particularly those related to a child’s physical or emotional comfort, may not require parents to acknowledge directly that their child is likely or certain to die. For example, members of a child’s care team can encourage parents to consider how to help a seriously ill child achieve a wish or goal, for example, a trip to Disney World or completion of a school activity. Some decisions about end-of-life care must, however, be explicit, for example, deciding on DNR orders or accepting hospice services, particularly if the latter choice requires agreeing to Medicaid’s requirements for hospice benefits. Because parents are often so focused on curative or life-prolonging care, discussion of hospice or end-of-life planning for their child may seem intolerable until death is very near or until continued reliance on life-sustaining technologies is finally recognized as just prolonging suffering and dying. By that time, important opportunities may have been lost to help the child and family avoid needless physical and emotional suffering.

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Although few studies have examined palliative and end-of-life care for children, the study by Wolfe and colleagues (2000a) cited earlier found that children for whom hospice care had been initiated earlier were more likely to be reported by their families as peaceful and calm during the last month of their lives. Notwithstanding the potential benefits of palliative and hospice care, it may be very difficult for parents to accept it, even if it is not presented as an “either/or” choice between life-prolonging and palliative care. For example, a couple responding to questions about their experiences wrote that “we never realized how much we needed and benefited from hospice care. . . . [Still,] we felt that to accept hospice, we were accepting Kelley’s dying. Our hospice nurse and social worker would tell us that we could always discontinue hospice if Kelley got better. . . . They had many patients who stopped hospice because they went into remission or their conditions stabilized” (Bula and Bula, 2001). Another woman who lost her daughter to cancer later wrote a member of the inpatient palliative care team, “I must stress how much I hated having to experience palliative care,” and then added “. . . but the team was so comforting and so very compassionate” (Himelstein and Hilden, 2001, no page). The psychologist on the child’s care team observed that the mother “dreaded the day you would darken her door.” As indicated earlier, barriers to certain aspects of palliative care and advance care planning may sometimes be cultural. For example, values in traditional Chinese and Navajo cultures may be inconsistent with explicit discussions about death and certain ways of planning for life’s end. A child’s care team should, however, still have a plan of care that anticipates changes in the child’s status. Recognizing that care under the palliative or hospice care label may be difficult for families to accept, several hospices have sought to make their services more acceptable and accessible to families by developing supportive programs based in their licensed home care units and then identifying them with somewhat indirect names.4 Unlike Medicare and Medicaid, some private insurers may cover hospice services or consultations without requir- 4   Examples include Caricel (Hospice of Northern Virginia), Essential Care (Center for Hospice and Palliative Care, Buffalo, New York), Children’s Bridges (Hospice of the Florida Suncoast), and Carousel (Hospice of Winston-Salem and others). In a discussion of pediatric palliative care in Britain, Ann Goldman said her team was often referred to as the symptom care team or, especially early on, as the home care team (Goldman, 2000a). “Most people don’t take very long to realize exactly what we do, and occasionally we’ll have families who will say, “I don’t think we want your help, please. We’ll call you when we want you,” because of the implication to them that our involvement means that their child isn’t going to get better” (Goldman, 2000a, no page).

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ing that curative or life-prolonging treatments cease or that life expectancy be certified as six months or less (see Chapter 7). Still, even when both clinicians and parents are prepared to consider palliative or hospice care, lack of financial, organizational, and other resources may limit access to such care. Although far more limited than corresponding efforts related to adult end-of-life care, some organizations mentioned here as well as others have begun community information and education programs to make options more widely known to families, health care providers, religious leaders, school personnel, and others. These efforts may encourage some parents to consider end-of-life planning earlier and may reduce avoidable distress for some children but are unlikely by themselves to make a substantial difference. More creativity and more research are needed to find strategies that encourage timely discussion of end-of-life care that will prevent needless suffering, help children and families make the most of their remaining time together, and preserve parents’ need to feel they have done everything possible for their child. Involvement of Child Patients Agreement has been growing that children should be informed about their medical condition and that they should also be involved in discussions about the goals and plan of care, including end-of-life care, consistent with their intellectual and emotional maturity, medical condition, and desire to participate (see, e.g., Brock, 1989; Burns and Truog, 1997; Hilden et al., 2000c; Hinds et al., 2001; Nitschke et al., 2001). In many situations, even children and adolescents with serious cognitive disabilities can indicate their preferences about care. In writing about the death of his 28-year-old sister, who had Down syndrome and developed leukemia, physician Chris Feudtner wrote, “Along with my family, I had contemplated every facet of her life as long as I can remember—asking constantly what mattered to her and why—with efforts simply redoubled once she became sick, commitment deepened to abide by her rules as best we could” (Feudtner, 2000, p. 1622). Certainly, a child’s cognitive and emotional maturity and preferences for involvement must be considered in preparing for initial and subsequent discussions to inform and involve children. What is appropriate for a 6-year-old—perhaps the use of stuffed animals and other play techniques to aid in explaining and assessing understanding—will not be appropriate for a 16-year-old. Given this country’s ethnic, cultural, and religious diversity, family values about discussions of death, medical care, and children’s roles must also be taken into account and respected. The child’s care team must be

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sensitive to family values and preferences but can work with families on how to inform and involve children and how to identify and respond to their concerns and wishes. As suggested earlier, failure to inform and involve children can lead to feelings of isolation and other distress. Further, it can prevent parents and clinicians from truly appreciating a child’s values, goals, and experience of his or her disease and its treatment and from using that appreciation to guide the child’s plan of care. As discussed in this chapter and in Chapter 8, parents usually have the legal authority to make decisions for their child, but this is no way precludes the child’s involvement in discussions and decisions about their care. Chapter 10 notes that children’s “assent” to participation in research is normally expected but not necessarily required. Ethical issues may arise if children are led to believe they have choices when, in fact, their choices will be overridden if their parents disagree. WHAT WILL HELP MY CHILD AND MY FAMILY? FITTING CARE TO GOALS AND CIRCUMSTANCES Designing a Palliative Care Plan as Part of an Overall Plan of Care Not all suffering caused by life-threatening medical conditions or by the pursuit of cure or prolonged life can be prevented and not all goals of patients and families can be met. Nonetheless, if suffering or the potential for suffering is not even recognized or if the goals of care are not carefully considered, then opportunities to prevent or relieve distress and to protect quality of life for patients and families will certainly be missed. Regardless of choices about curative or life-prolonging treatments, advocates of palliative care stress—to clinicians, patients, family members, policymakers, educators, researchers, insurers, and communities—that care plans should always include steps to assess and prevent physical, emotional, and spiritual suffering. As described by the American Academy of Pediatrics in its statement on pediatric palliative care, “The goal is to add life to the child’s years, not simply years to the child’s life” (AAP, 2000g, p. 353). Designing a care plan that appropriately integrates curative or life-prolonging care with palliative care and preparations for death is a sensitive and sometimes formidable task. Depending on the child’s medical condition, the plan of care may include a mix of preventive measures, curative or life-prolonging interventions, rehabilitative services, and palliative care. The mix usually will change over time as a disease progresses, as the goals of care are reconsidered and adjusted, and as the benefits and burdens of therapies are reevaluated based on guidance and counseling from physicians and others. To illustrate, for a child with an eventually fatal condition such as

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muscular dystrophy, appropriate care for most of the child’s life may include scheduling standard childhood immunizations, treating respiratory infections, providing physical therapy to slow or adjust to declining physical function, and offering psychological counseling in response to emotional distress. As the disease progresses and symptoms intensify, a palliative care plan—whether or not it goes by that name—will increase the emphasis on physical, emotional, and spiritual comfort. The plan might include participation in a camp for children with similar medical problems, art and other therapies that help the child express his or her emotions and creativity, and special arrangements to allow the child to continue in school. Antibiotics, mechanical ventilation, enteral or parenteral nutrition, and hospitalization may be chosen, refused, or adjusted as the child, parents, and health care team assess and reassess the benefits and burdens of each therapy as the condition worsens. Clinicians will ask parents about the use of resuscitation and other life-sustaining interventions such as artificial hydration or nutrition. Their decisions may be profoundly affected by what and how they are told about the likely outcomes of such measures given their child’s medical situation. Box 4.3 summarizes some of the questions that a child’s care team (or teams) should consider from the time a child is diagnosed with a life-threatening medical conditions. Again, unless a child’s death comes quickly, these questions may be asked repeatedly. The responsibility of particular health care professionals for these different assessments will vary, as will the responsibilities for implementing various elements of the care plan. Physicians will take the lead in determining diagnosis and prognosis, identifying treatment goals and options to reach these goals, and assessing and explaining their potential benefits and harms to patients and families. Physicians and nurses generally share responsibility for evaluating symptoms and symptom management effects, but physical therapists, psychologists, child-life specialists, and others may also be involved in assessing a child’s physical and emotional functioning and his or her reactions to medical interventions. All members of the care team should be sensitive to the emotional and spiritual well-being of the child and family, but social workers, psychologists, child-life specialists, and chaplains will be particularly attentive to this area of assessment. Based on the multidimensional and multidisciplinary assessments of the child and the family, the child’s care team has the primary responsibility— in cooperation with the child (consistent with developmental stage) and family—for developing a care plan to meet the goals of care, and then monitoring its implementation and results and making adjustments as needed. The care plan may include directions related to nursing care, medications, physical therapy, and other interventions as well as provisions for consultations with palliative care specialists, psychologists, or others who

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BOX 4.3 Assessments Needed in Devising and Revising a Palliative Care Plan Disease Status and Symptom Assessment What are the child’s diagnosis and prognosis? How uncertain is the child’s future course? Is death expected soon? Would death in a few months be a surprise? How is the disease likely to affect the child physically, intellectually, and emotionally? What symptoms are present and what symptoms are likely to emerge? Preferences and Goals Has the parents’ understanding of their child’s medical condition and care options been carefully assessed? Has the child’s understanding of his or her medical condition and care options and his or her competence and interest in being involved in care decisions been carefully assessed? Do either the child or the family need more information or assistance in understanding the information already provided about the diagnosis, prognosis, and treatment options (including palliative care and end-of-life resources)? Do the child’s and the parents’ preferences appear to diverge in significant ways? Have the benefits and burdens of different therapy options been carefully explained? Have end-of-life issues and plans been discussed as appropriate given the child’s condition? Have documents (e.g., DNR or allow natural death orders) appropriate for the child’s medical status been completed and recorded in the medical record? Are copies of relevant documents available wherever they might be needed (e.g., home, school)? Psychosocial and Spiritual Assessment: Child (Patient) What does the child (taking developmental status into account) understand and feel about his or her medical situation? How should discussions with the child take temperament and other characteristics into account? What are the child’s hopes and fears for the present and the future related to family, friends, school, extracurricular activities, and similar matters? Does the child have concerns about religious, spiritual, or existential issues? Has a psychological consult or referral to a chaplain or other spiritual counselor been suggested or arranged? Has the child been sufficiently assured that he or she will be cared for and will not be abandoned (assuming that reassurance can be truthfully offered)? Psychosocial and Spiritual Assessment: Family How are the parents, siblings, and other close family members managing? How have they managed difficult situations in the past?

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What are the family’s main hopes and fears for the present and the future? What special psychological or practical issues need attention (e.g., presence of other children in the home, other family illnesses, communication or cognitive problems, history of violence or substance abuse)? Has assistance from a psychological counselor or from a chaplain or other spiritual counselor been suggested or arranged? Have family members been sufficiently assured that they will not be abandoned as the child’s condition changes (assuming that reassurance can be truthfully offered)? Child’s Functional Status What can the child do for him or herself? What kind of assistance is required at home, at school, elsewhere? What can family members do? What outside help is needed for the family? For teachers? Therapy Review and Evaluation What surgical, radiological, pharmacological, or other interventions have been employed? What interventions are planned or under consideration? What is their purpose? What are the results to date? What is expected (good and bad)? When should interventions be reevaluated? Are monitoring for side effects and assessment of pain and other symptoms adequate? What palliative interventions are being used or should be considered? What are the results to date? What health care providers are involved in the child’s care? Are the level and mix appropriate? If problems arise, is reliable assistance available 24 hours a day, 7 days a week? What are the benefits and burdens (for child, family, and caregivers) of the therapies being provided, and what are the alternatives? Are the care team’s perspectives and the family’s perspectives consistent? Are these perspectives consistent with those of the child? Resource and Logistics Review and Evaluation What is the composition of the care team and how is it functioning? Are additional professional and nonprofessional personnel needed? What is the availability of such personnel in the community? How is care being coordinated and information being communicated? Are there problems? What are the child’s and the family’s preferences about primary location of care, including at the time when death is expected? What barriers exist to accommodating these preferences? Are physical facilities in the home adequate (e.g., accessible bathroom)? How do transportation, economic, and other relevant resources match child and family needs? What else can be done? What is the financial burden on the family? Do additional sources of assistance need to be sought? Can resources be used more effectively or efficiently? SOURCE: Adapted from IOM, 1997.

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have expertise in assessing and managing particularly difficult problems such as intractable pain, delirium, and psychological distress. In a set of recommendations for end-of-life care in the ICU, Truog and colleagues (2001) observed that for clinicians accustomed to focusing on cure and life-prolongation, it may difficult to focus on the goals of comfort and symptom management. They suggest, particularly when the end of life is approaching and the failure of curative or life-prolonging therapies is clear, it may be useful to “completely rewrite the patient’s orders and care plan, just as if the patient were being newly admitted to the ICU” and then to evaluate each test or intervention in terms of how it serves the goals of care (Truog et al., 2001, p. 2335). Involving Children in Decisions About Palliative and End-of-Life Care Parents (or guardians or other designated adults) will in most cases retain legal authority to make decisions about a child’s medical care (see Chapter 8). That legal fact does not and should not restrict parents and clinicians from involving children in discussions and decisions about their care, consistent with their intellectual and emotional maturity. As noted earlier, excluding children can lead to feelings of isolation, anxiety, and other distress. Recommendation: Children’s hospitals, hospices, and other organizations that care for seriously ill or injured children should work with physicians, parents, child patients, psychologists, and other relevant experts and with professional organizations to create policies and procedures for involving children in discussions and decisions about their medical condition and its treatment. These policies and procedures— and their application—should be sensitive to children’s intellectual and emotional maturity and preferences and families’ cultural backgrounds and values. Assessing children’s competence to be involved with decisions is an individual process that considers a particular child’s intellectual and emotional development and understanding of the issues, his or her medical condition, and the family’s values and relationships (including patterns of communication). Assessments also should consider the specific decisions in question and the probabilities and significance of possible consequences of the decisions. Some experts see age 10 as the usual age for meaningful involvement in decisions about serious medical problems (Hinds et al., 2001). Nitschke and colleagues concluded from their research involving 43 families with children who had cancer that children as young as 5 or 6 years of age could

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participate in end-of-life discussions (Nitschke et al., 1982). The researchers also concluded that, in practice, the patients themselves (aged 6 to 20 years) often made the final decision between investigational therapy or supportive care for their end-stage cancer. Of the children studied, 14 chose further chemotherapy, 28 chose palliative care only, and 1 made no decision. The majority of children who chose supportive care were able to talk with their families about their fears and actively participate in family life. For adolescents, regardless of their legal status, parents may recognize and accept that their teenager has the evident intellectual and emotional maturity to make decisions about care at the end of life. Adolescents may, however, need particularly careful assistance in understanding the available options and their possible consequences (Stevens, 1998; Hinds et al., 2001; see also Rushton and Lynch, 1992; McCabe, 1996; McCabe, et al., 1996). Some research suggests that younger adolescents do not differ greatly from adults in their ability to understand and reason about medical alternatives (Weithorn and Campbell, 1982), but other research suggests that younger adolescents are less able than older adolescents to imagine future risks and consequences of choices (Lewis 1981). Some studies suggest that involving children in decisionmaking increases their capacity to make decisions (Lewis and Lewis, 1990; Alderson, 1993). Implementing the Care Plan Devising a good palliative care plan does not ensure implementation. Later chapters of this report suggest how organizational problems, financial obstacles, lack of adequately trained health professionals, and gaps in scientific knowledge can compromise care. For example, institutional policies may restrict the hours during which families can visit a seriously ill child and physical structures may limit the amount of privacy, intimacy, and physical comfort available to families. Geography is another limiting factor. Children and families in remote rural areas will generally have less access to certain palliative care resources just as they tend to have less access to other health care resources such as advanced pediatric trauma care. Regional information and consulting resources can help (see recommendations at the end of Chapter 6) but cannot overcome all geographic problems. Supporting the Family Even with good support from the child’s care team and involved institutions, much of the responsibility for implementing and monitoring a child’s care plan will rest with family members. As Hilden and colleagues have observed, families coping with a child’s extended life-threatening ill-

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ness “often joke that they should receive honorary medical or nursing licenses” (Hilden et al., 2001b, p. 168). Although the comment may be somewhat tongue-in-cheek, it highlights the complex tasks facing child patients and families—understanding and evaluating great amounts of information, advocating for needed information and services, making informed choices, directly providing care, monitoring a child’s status, and negotiating billing, insurance, program eligibility, and other bureaucratic processes. As one parent remarked, “It’s like you suddenly have a new small business to figure out and run on top of everything else going on.” The family’s role in caregiving is increasingly being recognized, and more resources are being provided by hospitals, family support organizations, and other sources to help them perform this role effectively. Most practical resources appear to focus on caregivers for adults, especially elderly adults (see, e.g., ACP, 1997a,b; Karpinski, 2000; Meyer, 1998; Schmall et al., 2000; but see also CHI, 1991; Houts, 1997; Bayer Institute, 2001), although pediatric hospice programs and state and other programs for children with special needs also consider the needs of parents or other caregivers. Studies and experience suggest that many family caregivers receive little if any explicit training for what can be very demanding physical and emotional care responsibilities (Bull and Jervis, 1997; Levine, 1998; Driscoll, 2000; Rigoglioso, 2000). In addition to providing information as described earlier in this chapter, Internet sites may suggest questions for parents to ask about the course of particular medical conditions, symptom management, and sources of assistance. Such prompting can help parents participate more effectively and fully in developing, understanding, and implementing their child’s care plan. Internet sites may also provide forums for people to seek and offer information about caregiving strategies. Comprehensive guidance for family caregivers should cover physical and emotional problems and responses for child patients, parents, and siblings (e.g., isolation, depression, anxiety); spiritual resources; practical concerns (e.g., having advance care directives at hand when they are needed, managing health insurance, obtaining help from community agencies or volunteer groups); and bereavement. The next chapter examines the spiritual, emotional, and practical dimensions of care for the child and family.