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CHAPTER 5 CARE AND CARING FROM DIAGNOSIS THROUGH DEATH AND BEREAVEMENT “I remember at the funeral the priest saying—he was trying to be comforting but [was] so far from knowing what it was really like those past months—that ‘now she wasn’t suffering anymore.’ . . . It pissed me off . . . we had tried so hard not to make her suffer.” Susan Rheingold, physician (Himelstein and Hilden, 2001) The prevention and relief of suffering—physical, emotional, spiritual— is a core mission of palliative care. Although not all suffering can be prevented or relieved, severe pain and other symptoms are not inevitable consequences of serious illnesses or their treatment. Continued research into the mechanisms of symptoms and palliative interventions is essential, but health care professionals and organizations can do more now to apply existing knowledge and resources to spare patients and families from physical and emotional suffering. A broader goal of palliative care is to help children with life-threatening medical conditions and their families live as normally and as well as possible under the circumstances. Even quite sick children can often take pleasure in playing, seeing friends, continuing classes and other normal activities, and being at home in familiar surroundings. For hospitalized children, administrators and clinicians can look for ways to design physical environments, clinical routines, and special programs to minimize the obtrusiveness of intensive care units and other medical settings, encourage and welcome the presence of family and friends, and provide opportunities for play, education, and other ordinary childhood activities.
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As emphasized throughout this report, palliative care is not an “either/ or” proposition. Although care may sometimes focus solely on patient and family comfort, the integration of palliative care with curative or life-prolonging therapies can benefit children who survive life-threatening conditions as well as children who die and can thereby support the families of children in both groups. This chapter examines the physical, emotional, spiritual, and practical dimensions of care for children with life-threatening conditions and their families. Although bereavement care is part of comprehensive emotional and spiritual care for family members before and after a child’s death, it is—for emphasis—discussed in a separate section. Recommendations related to the discussion in this chapter are sufficiently intertwined with the discussions and recommendations about the organization and delivery of care in Chapter 6 that they are included in that rather than this chapter. THE PHYSICAL DIMENSIONS OF CARE General Physical comfort should be a fundamental priority in health care for all children, but it is especially important for children who have life-threatening medical conditions and are enduring burdensome therapies. Unrelieved physical distress affects both the child and the family. It can also interfere with beneficial therapies, for example, when children in extreme pain will not cooperate with treatment. Effective physical care for children requires a solid understanding of both the sources of distress—which can require extensive investigation— and the developmentally appropriate strategies for preventing or relieving that distress. For example, drug regimens shown to be effective in relieving a symptom in adults cannot simply be extrapolated to infants and children because developmental variations in metabolism and body composition (e.g., amount and distribution of fat, water, proteins) may affect the action of drugs. Unfortunately, many drugs have not been tested and labeled for use with children, and understanding of the underlying mechanisms of symptoms and symptom management techniques in children is underdeveloped. Federal regulations and legislation adopted in recent years provide incentives and requirements for pediatric research, including studies by pharmaceutical companies to test drugs in children and develop pediatric drug dosing information (USGAO, 2001b). Chapter 10 discusses these incentives and, more generally, the challenges—practical, methodological, organizational, legal, and ethical—of expanding the knowledge base for pediatric palliative care. It also discusses directions for future research to improve all dimensions of palliative and end-of-life care.
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Particularly for younger children, family observations and reports will often be essential in determining the presence, severity, and characteristics of a child’s physical distress and in evaluating the success of efforts to relieve it. In addition to providing information and observations necessary for care planning and evaluation, parents and other family members will often provide much physical and other care for their child, particularly when the child is at home. Even in hospitals, however, families may feel comforted by providing some physical care themselves. Moreover, staffing shortages or reductions may prompt them to provide care that might otherwise be provided by nurses or nurses’ aides. Depending on the expected caregiving role of family members, physicians and other members of the child’s care team should assess the need of family members for training in both technical tasks (e.g., operating medical equipment or changing dressings) and mundane but possibly risky tasks (e.g., bathing or moving someone with serious medical problems). The team may also have to prepare school nurses and other personnel to help with physical care when a seriously ill child returns to school. The focus in this section is on physical care for the child, but a comment on care for family members is also warranted. Pediatricians do not serve as personal physicians for parents, although family practitioners often do, and both may care for the siblings of ill children. In any case, if the unit of care is truly the child and the family, then generalist and specialist pediatricians, family practitioners, nurses, hospice personnel, and others should be attentive to the physical and emotional toll that a child’s serious illness or death may take on family members. This attention may take various forms, including questions about possible signs of illness or stress, reminders that parents need to take care of themselves and their other children, and suggestions that a formal evaluation be sought for a family member exhibiting signs of possible medical problems. With a parent’s permission, someone from the child’s team might contact the parent’s or sibling’s personal physician to include her or him in the family support network and ensure that the parent or sibling gets additional evaluation and support during a very difficult time. Care for Pain and Other Physical Symptoms One goal of excellent symptom management is to prevent both disease-related symptoms and treatment-related distress to the extent possible. When symptoms do develop, the goal then is to identify and relieve them as quickly and fully as possible, while minimizing unwanted side effects, for example, the sedation associated with certain pain medications. Achieving these goals typically involves a mix of pharmacological, behavioral, and other therapies as well as good communication with all mem-
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bers of the child’s care team, including the parents and the child (consistent with developmental stage). Careful attention to nutrition, hygiene, posture, mobility, skin care, self-image, and other physical factors also contributes to a patient’s comfort and quality of life. Box 5.1 lists some of the most common physical symptoms experienced by seriously ill or injured children. Compared to adults, the prevalence, distribution, and pathophysiology of pain and other symptoms are poorly mapped for children living with and dying of life-threatening medical problems (Goldman, 1999). This may in part reflect the greater difficulties in communicating with and ascertaining symptoms in infants, other preverbal children, and older children with communication deficits. In addition, it almost certainly reflects a more intense focus on curative care that does not yet include adequate attention to patient comfort. Symptoms such as pain or nausea may be related to the child’s underlying medical problems, treatment for these problems, or both. Some studies of cancer pain in children suggest that diagnostic and treatment procedures may often be more immediately distressing than the disease, especially if the child is too young to understand the implications of the disease and the explanations for painful procedures (Cornaglia et al., 1984; Miser et al., 1987; McGrath et al., 1990; Ljungman et al., 2000). Also, some research suggests that children who receive inadequate pain management during an initial procedure may experience more pain during subsequent procedures than children who have been appropriately managed (Weisman et al., 1998). Given the pain and other burdens imposed by some potentially curative or life-prolonging treatments (e.g., surgical procedures, chemotherapy or radiotherapy regimens), many parents and child patients with advanced disease face emotionally difficult decisions about when the likely burdens of such treatments exceed their likely benefits. Whatever the choices of families, those caring for children need both to better understand the pain and other distress caused by common procedures (e.g., intramuscular, intravenous, and subcutaneous administration of drugs, including pain medications) and to consider less burdensome alternatives. These alternatives may include reevaluation of the necessity for certain painful diagnostic and other procedures, the use of innovative pharmacological strategies (e.g., disks that numb the skin before injections or other procedures, pleasant-tasting oral formulations of drugs), and the application of nonpharmacologic approaches such as relaxation, imagery, distraction, hypnotic suggestion, massage, and acupuncture. In addition, child- and family-friendly physical surroundings and procedures and the presence of child-life specialists and other personnel trained to work with children may help reduce emotional distress, which, in turn, may reduce physical distress. Although certain diagnoses tend to be associated with certain symptoms (e.g., bone pain with certain metastatic cancers, seizures with certain
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degenerative brain disorders, shortness of breath with certain end-stage heart conditions), children with the same initial diagnosis can differ considerably in their experience of disease-related symptoms. Likewise, although certain treatments tend to produce certain symptoms (e.g., vomiting with some forms of chemotherapy, mouth sores with some radiotherapies), children with the same diagnosis and same treatment may vary in their responses, including their experience of treatment-related symptoms. For children with advanced medical problems, the type and intensity of palliative physical care needed may be determined less by the medical diagnosis than by symptoms and other manifestations of the underlying medical condition or its treatment. Given such individual variability, each child requires an individual assessment of symptoms and the development of a responsive care plan (McGrath, 1998; Goldman, 1999; see also Schechter et al., 1993, 1997). In addition to considering the child’s diagnosis and reports of symptoms by the child or parents, clinicians should consider other characteristics of the child (e.g., cognitive capacity, personality, past medical experiences) and the family (e.g., coping behaviors, cultural values and practices). Characteristics of the health care environment may also be relevant to the development and implementation of symptom management strategies (e.g., restrictions on parents’ presence during painful procedures involving children, availability of clinicians skilled in treating small patients and managing difficult symptoms, insurance coverage of certain medications or other interventions). Studies reviewed in Chapter 3 suggest shortfalls in symptom assessment and management and point to numerous opportunities for improvement in the care of children with life-threatening medical conditions. Particularly in the area of cancer pain, one response has been initiatives to develop and implement evidence-based assessment and management protocols that stress the timely and adequate use of appropriate medications and behavioral interventions (e.g., distraction therapies) to prevent and relieve pain in children (see, e.g., WHO, 1998). Chapter 6 discusses the role of such protocols and recommends their broader development and application. Parents as Experts on Their Child’s Comfort Once while explaining Bellini’s desire for a certain positioning to a new nurse, I was told by someone watching, “Oh, you’re so fussy!” Am I? Am I going overboard to want my son, who has so few options for comfort, to be comfortable, especially when I happen to know what makes him comfortable? Susan Hostetler-Lelaulu, parent, 1999
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BOX 5.1 Major Physical Symptoms That May Be Experienced by Children with Life-Threatening Medical Conditions Pain Key dimensions of pain include intensity, duration, and burden felt by the child. Pain is categorized as somatic, visceral, or neuropathic depending on its apparent origin. Uncontrolled pain significantly interferes with a child’s functioning and well being. It can contribute to depression, irritability, and anxiety and can disrupt social relationships. Nausea and Vomiting Nausea (feeling that one may vomit) and vomiting are common symptoms for children with certain kinds of advanced cancer and also may be side effects of treatments such as chemotherapy. The neurophysiology of nausea and vomiting in children is not well understood. They may be prompted by a variety of stimuli (e.g., movement, odors, anxiety, medications, past experiences). Underlying causes may include gastric irritation, constipation, elevated intracranial pressure, and disturbances of metabolism. Bowel Problems: Constipation, Diarrhea Constipation may be caused by medications (including opioids), emotional stress, reduced intake of food and liquid, abdominal tumors or adhesions, or decreased activity. It can be extremely uncomfortable and, if unrelieved, life-threatening. Children may be somewhat less susceptible than adults, especially older adults who tend to have weak muscle tone and other problems. Diarrhea is less common than constipation in cancer patients. It is often a feature of advanced neuromuscular disorders and extreme mental retardation. Bowel incontinence is, of course, expected in infants. Seizures or Convulsions Seizures result from sudden, uncontrolled bursts of electrical activity in the brain. They may involve one or more of the following: a total or partial loss of consciousness; abnormal physical movement; sensory disturbances; and pain or other unpleasant sensations. Seizures can be frightening and disturbing to family members who witness them. Some fatal medical problems (e.g., certain inborn errors of metabolism) are characterized by seizures throughout their course, whereas seizures develop only in the late stages of certain other disorders (e.g., some brain tumors) or they may result from an acute problem (e.g., meningitis). Some children with fatal medical problems may independently have epilepsy or other conditions that cause seizures. Anorexia–Cachexia Syndrome This syndrome involves decreased appetite (anorexia) and wasting of soft tissue and muscle mass (cachexia). Severe wasting appears to be less common in
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children with cancer and AIDS than in adults with these diseases. Loss of appetite occurs in the late stages of many diseases. Some causes are reversible, at least for a time, but anorexia and cachexia may be an intrinsic part of the dying process for certain conditions. Mouth Problems Children with advanced illness may be troubled by various mouth problems, including dry mouth, sores, dental problems, and infections related to their medical condition or its treatment. Oral problems can make eating, drinking, and taking of medication unpleasant if not impossible, thereby increasing the risk of dehydration and malnutrition. Meticulous oral hygiene can help prevent such suffering in a child nearing death. Fatigue Fatigue may lead to sleepiness, weakness, depression, anxiety, difficulty concentrating, and other problems. It may be caused by both diseases (especially cancers) and their treatment. Extreme tiredness may interfere with a child’s ability to move, bathe, or go to the toilet. The mechanisms of pathological fatigue and its treatment are poorly understood. Dyspnea and Cough Dyspnea (feeling short of breath) may result from a number of pulmonary, cardiac, neuromuscular, and psychological conditions. Cough can be caused by irritation; excessive mucus and other fluids; and inhalation, certain drugs, and other mechanisms. Dysphagia Dysphagia is difficulty in swallowing food or liquids. Developmental immaturity, brain malformations, trauma, infection, cancer, and neuromuscular diseases are common causes of this problem among children. Inability to swallow affects hydration, nutrition, and taking of medication. Skin Problems Skin problems that cause distress may arise from the underlying disease or its treatment or both. Problems may include itching, dryness, chapping, acne, sweating, hair loss, and extreme sensitivity to touch. Some problems, such as pressure ulcers, are less common in children than adults. In addition to causing physical discomfort, skin problems may be perceived by patients as indignities to be hidden from others. SOURCE: Adapted from IOM, 1997, with additional information from Doyle et al., 1998; Behrman et al., 2000; and Goldman, 1999.
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Parents of children with severe chronic medical conditions usually come to know their child’s physical condition intimately and may become quite expert at recognizing subtle changes and other cues that suggest discomfort. Likewise, their past experience with procedures or actions that have distressed or comforted their child may help them predict how their child will respond to future procedures, which may then be considered in developing a care plan. Although they may need the physician to interpret medically what they see, parents often act as the “eyes and ears” of the physician, especially when the child is at home. In the vignette about “Johnny Gabrielle” in Chapter 3, physicians, nurses, and others recognized and depended on the mother’s expertise, even as they tried with little success to find effective ways to relieve the child’s distress and reduce the mother’s burden. The committee located no research investigating this topic, but it seems prudent for clinicians caring for a distressed child to inquire about what parents have found increases or reduces the child’s distress—just as they inquire about other aspects of a child’s medical history. Physical Care When Death Is Imminent Reevaluation of Symptoms and Symptom Management Whether a child is at home or in intensive care, as death nears, certain care that has extended life or maintained comfort may become more burdensome than beneficial. For example, although dehydration is normally treated with intravenous fluids, the use of such artificial hydration for a patient nearing death may not increase patient comfort but may instead cause excessive secretions that, in turn, promote vomiting, coughing, choking, and other problems. If a patient feels thirsty or complains of a dry mouth, ice chips or small amounts of liquid combined with good mouth hygiene may be soothing (see, e.g., Twycross and Lichter, 1998). Although many hospice and palliative care experts are convinced by their experience of the merits of this approach, recommendations and decisions to avoid artificial hydration at the end of life are controversial. Little rigorous research is available to resolve disputes (Twycross and Lichter, 1998; Kedziera, 2001; but see also Finucane et al., 1999). Depending on a child’s medical condition and its progression, control of pain and other symptoms may become an increasing challenge for the care team as, for example, tumors invade vital areas, lung or kidney function deteriorates, seizures multiply, or bleeding becomes more difficult to control. Although all clinicians who care for patients should have good skills in symptom assessment and management, the expertise of a palliative care specialist may be required for difficult or refractory symptoms of
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advanced disease or severe injury. Families that have been able to manage their child’s care at home may now need assistance from hospice or specially trained home care personnel. Some choices in physical care and symptom management when death is imminent may cause considerable stress for clinicians and families. (Ethical and other issues in making end-of-life decisions are discussed in Chapter 8.) Pain and other symptoms can usually, but not always, be managed without sedation. When symptoms at the end of life remain uncontrolled after other alternatives are tried, one legal and generally—but not universally—accepted option is “terminal sedation,” which might more appropriately be labeled “palliative sedation” (Kingsbury, 2001). The practice involves the careful increase in analgesic or sedative doses to achieve deep unconsciousness that relieves a dying patient’s otherwise intractable pain, shortness of breath, seizures, hallucinations, or other severe symptoms (see, e.g., Cherny and Portenoy, 1994; Kenny and Frager, 1996; Quill et al., 1997). Research has not shown a clear association between deep sedation and the timing of death (see, e.g., Stone et al., 1997; Galloway and Yaster, 2000; Thorns and Sykes, 2000). Nevertheless, one uncommon and unintended result of such sedation may be to hasten an impending death. Although death is not the objective, clinicians (including those who engage in palliative sedation or choose it for their family members) and others may incorrectly characterize deep sedation as assisted suicide or euthanasia (which has death as the intended means of relieving suffering) (see, e.g., Asch, 1995). Clearer and more careful education of staff and consultation with families should reduce such misunderstandings and minimize unwarranted anxieties or guilt feelings. Again, a physician should pursue deep sedation only after careful determination that other options are failing the patient and after consultation with and agreement from the parents and the child, depending on his or her condition and maturity (Kenny and Frager, 1996; Burns et al., 2000; Levetown, 2001). Clinical protocols for sedation should be established and meticulously followed. Life Support Technologies Just as symptom management strategies may be reevaluated and adjusted as death approaches, so the conventional use of advanced life support technologies (e.g., cardiopulmonary resuscitation, mechanical ventilation, renal dialysis) may be reconsidered and withheld or withdrawn when the physician(s), parents, and possibly the child agree that their use will only prolong dying and increase suffering. These situations are not, as sometimes described, times when “nothing more can be done.” Rather, good clinical care and interpersonal skills can help prevent or minimize
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suffering on the part of the patient, the family, and the health care team itself. Recent guidelines for end-of-life care in the intensive care unit urge intensivists to become “as skilled and knowledgeable at forgoing life-sustaining treatments as they are at delivering care aimed at survival and cure” (Truog et al., 2001, p. 2332; see also Rubenfeld and Curtis, 2000). Although the guidelines are not specific to children and certain details of care may differ, the general principles and perspective should provide useful guidance for pediatric intensivists. Whatever the decisions and strategies, careful communication with parents and respect for family preferences are essential to good outcomes for all involved (Kirschbaum, 1996) (see Chapter 8). In some cases, parents may request the removal of mechanical ventilation (extubation) when death is near to allow one last opportunity for unobstructed physical contact (see Levetown, 2001; Sine et al., 2001). Procedures for discontinuing mechanical ventilation at the end of life with minimal patient and family suffering are the subject of some disagreement. Issues involve the intensity of sedation, the use of paralyzing agents, and the removal of the breathing tube (extubation) without prior steps to “wean” the patient by reducing oxygen level and pressure (see, e.g., Faber-Langendoen, 1996; Gilligan and Raffin, 1996; Truog et al., 2000; Levetown, 2001).1 Because some children undergo mechanical ventilation at home and children and families may prefer that removal of the equipment occur at home, protocols for discontinuing mechanical ventilation must consider home as well as hospital procedures and supports for both the child and the family. As with any other intervention, parents and other family members who will or may be present should be carefully informed about exactly what will happen as part of removing the equipment, what may happen afterward, and what can be done (e.g., administration of medications, presence of family) to keep the child comfortable. Continued study of decisions about withholding life-sustaining interventions, the rationales for such decisions, and the associated processes of care, including comfort measures for the patient and family, would help inform the debate over compassionate and ethical end-of-life care. Better descriptive information should also help in identifying administrative, edu- 1 Truog and colleagues (2001) have emphasized that use of paralyzing agents alone blocks the ability to communicate distress (e.g., feelings of pain or suffocation) without relieving it and that, even in combination with sedatives and analgesics, the agents make it impossible to determine whether these medications are working effectively. They argue that no patient should have a breathing tube removed while under the influence of a paralyzing agent unless death is expected quickly and waiting for the agent to wear off would be more burdensome than beneficial.
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cational, and research strategies to improve decisions, processes of care, and outcomes. As recommended in Chapter 6, a broad-based process to develop scientifically and ethically informed pediatric guidelines for making and implementing decisions about limitations of care (including appropriate clinical procedures and comfort measures, whether life support is continued or limited) might help reduce inappropriate variability in decisionmaking, limit preventable suffering, and increase fairness. Another issue that has sparked controversy is the presence of family members during resuscitation efforts. A comprehensive, evidence-based statement on various aspects of cardiopulmonary resuscitation recently recommended that health care providers should offer family members the opportunity to be present during resuscitation whenever possible, especially if the patient is an infant or child (AHA et al., 2000a). From their review of research, the authors of the statement concluded that family members generally do want to be present during resuscitation and that those who have been present tend to have less depression, anxiety, and other problems during bereavement than those who have not (see also Bauchner et al., 1991; Eichhorn et al., 1996 Sacchetti et al., 1996; Timmermans, 1997; Robinson et al., 1998; Boyd, 2000; Tsai, 2002). Many clinicians have, however, feared that uncontrolled reactions by family members could interfere with patient care (as well as require responses by staff in their own right). Even their simple presence could be distracting, and support could require the diversion of scarce resources. The new recommendations specify that a staff person should be designated to be with the parents during a resuscitation attempt to explain what to expect, answer questions, and otherwise provide support. Physical Care After the Child’s Death Physical care does not stop with death. Care of the child’s body after death can be very important to families, who may be comforted by touching, cuddling, rocking, bathing, or dressing their child. Cultural and religious values may also direct such involvement—or discourage, if not forbid, it. The consensus today among pediatric and palliative care experts is that family members should be offered the opportunity to be with their child after death and that families who lack such an opportunity (or reject it) may later regret the loss of this last time together (Sexton and Stephen, 1991; Goldman, 1999; Iverson, 1999; CPS, 2001; Levetown, 2001). Such accommodation of families is generally easier when the child dies at home rather than in an intensive care unit or other inpatient setting. If it is a priority, however, most hospitals can provide the requisite space, time, and other support. As described in Chapter 6, some hospitals have arranged a well-equipped, comfortable room that is expressly intended as a private area for families to be with their child during and after death.
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Box 5.2 Examples of Practical Dimensions of Care for Patients and Families Normal Life What to provide for the child’s immediate comfort, control, safety, mobility, and privacy: adapting, arranging and decorating the child’s physical space (e.g., hospital room, bedroom, bathroom); modifying the family car How to manage personal care and appearance changes: developing routines and finding assistive devices for bathing, dressing, and other activities; fitting medical equipment (e.g., wheelchairs, oxygen) into life at home, school, and elsewhere; offering tips for coping with altered physical appearance (e.g., loss of hair, scarring, prostheses) How to continue schooling: planning with teachers and other school personnel for medical and emergency support; preparing schoolmates; arranging a shortened school day or home or hospital schooling How to provide for play activities and friends: adapting the home physical environment; preparing playmates for a child’s return home; selecting or adapting toys, art materials Family and Others Close to Patient What to do for parent caregivers: advising on employment issues and finances including eligibility for government assistance; arranging or providing volunteer or paid assistance with housekeeping, meal preparation, or respite from caregiving; short-term versus longer-term assistance What to do for siblings: babysitting; arranging assistance with homework and time for play, friends, and other normal activities Planning and Quick Reference Information Whom to call: having easy-to-locate phone numbers (including after-hours numbers) for physician and other team members; pharmacy, medical equipment company, case manager, or other health care coordinator; family and friends to be notified of death, imminent death, or emergency What decisions have been made: having accessible documentation (at home, at school) of family and, as appropriate, child preferences for care (e.g., written orders to allow natural death) What to do for pain and other symptoms, problems with medical equipment: providing quick, clear reference guides for relieving symptoms, dealing with equipment problems, and getting additional help or information What to expect: providing information on signs of impending death and caregiver response What to do after death: plans for religious and other rituals (e.g., funeral, memorial service, wake), creation of mementos, notification of family members, funeral plans, arrangements for care of very young siblings What to do in the event of parental incapacity: identifying guardian and location of estate planning, financial, and other records SOURCE: Adapted from IOM, 1997.
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tion face greater practical and other burdens, but they—or at least their child—may qualify for Medicaid and for programs to help children with special health care needs. Despite their limitations (see Chapter 7), these programs often offer or provide supportive services beyond those usually covered by private health plans. Most hospices are attuned to practical as well as clinical issues. In general, hospices have found their greatest acceptance among more educated, middle-class patients and families, although many have tried to reach out to disadvantaged individuals, families, and communities. In trying to “diversify” culturally to serve families from different economic, religious, and cultural backgrounds, they may identify a wider range of practical needs. Assistance from friends, neighbors, employers, and others in the community can make an important difference in the experience of families living with a child’s serious illness. For example, having a friend or neighbor offer to stay with a child’s siblings can make it less complicated to visit a doctor with the ill child. Having someone baby-sit the ill child may allow parents a few hours respite to have a quiet dinner or to give other siblings special attention. Formal respite services that provide professional or supportive care at home or at a residential facility provide stressed families a greater opportunity to regroup physically and emotionally, whether this involves a short vacation or taking care of neglected household and business matters. Such services, which are central features of British child hospices (Goldman, 1999; Rushton, 2001), are limited in this country. Employers can help parents whose child has a life-threatening medical problem by being flexible about working hours and leave (including provisions for coworkers to contribute leave). Employee assistance programs offered by many larger employers may help identify counseling and other resources for employees or family members. Employer-sponsored health insurance is critical to families, notwithstanding limits in coverage of pallia-tive and hospice services. Employers will sometimes agree to waive limits in their health plans on benefits for children with life-threatening medical problems. (See Chapter 7.) Teachers and other school personnel can likewise contribute by making practical and creative arrangements that help a child stay in school. Going to school maintains a dimension of normal life amidst much that is decidedly not normal.4 4 Since the 1960s, federal legislation and court decisions have essentially established that states must provide free public education and related supportive services for children with disabilities, regardless of the severity of their disability. In 1994, more than 5 million children were receiving special education services as provided for by federal legislation. (For a summary of the relevant statutes and judicial decisions, see NICHCY, 1996.)
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As noted earlier, faith communities not only can offer spiritual and emotional support but also can organize to provide more mundane—but very real—aid in the form of meals, transportation, shopping, and respite care. Although they may charge fees to cover some of their costs, volunteer and charitable organizations (Meals on Wheels, Ronald McDonald Houses) can likewise provide help with a variety of practical matters, such as finding accommodations while a child is hospitalized. GRIEF AND BEREAVEMENT CARE Parenting is a permanent change in the individual. A person never gets over being a parent. Parental bereavement is also a permanent condition. The bereaved parent, after a time, will cease showing the medical symptoms of grief, but the parent does not “get over” the death of the child. Klass, 1988, p.178 One question I have since my sister died is “When does it stop hurting?” My mom said, “someday,” and that helped. . . . I think it never completely stops hurting, but it doesn’t hurt as much. Martha, sister (in Romand, 1989, p. 31) Once a child dies, care for that child ends. For the family, however, emotional, spiritual, and practical needs for support continue beyond the child’s death. The death of a child is described as one of life’s most devastating experiences, affecting parents, siblings, and a wider circle of relatives and friends. Research suggests that the death of a loved one—whatever the age— puts the bereaved person’s physical and emotional health at risk (see, e.g., Maddison and Viola, 1968; Clayton et al., 1972; Schaefer et al., 1995; Prigerson, 2001; Rubin and Malkinson, 2001; Stroebe et al., 2001b). Appropriate psychological, spiritual, practical, and sometimes physical care for bereaved family and friends is intended to reduce these risks. Although this discussion focuses on research and analytic perspectives on grief and bereavement, the committee recognizes the need to hear the voices of bereaved parents, siblings, and others close to a child who is dying or has died. The statement to the committee from Compassionate Friends urged health care professionals to prepare themselves by reading articles and other writings of bereaved family members and not to limit themselves to the writings of clinicians and researchers (Loder, 2001). This report reflects the committee’s effort to do so while being aware that the writings consulted will not reflect the full range of family experiences and circumstances.
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The death of a child is never easy, but the circumstances of a child’s death will affect the family’s experience and the responses of health care professionals. When a child is diagnosed with a fatal or potentially fatal condition, families have some time to grieve an anticipated loss and, in some sense, prepare for the worst. When death comes with no forewarning, bereavement can be particularly difficult. The following discussion considers, first, grief when death follows an extended course and, then, grief when death comes suddenly and without warning. Appendix E provides a further review of literature, questions, and research needs related to bereavement following the death of a child. When Death Follows an Extended Course Grief in Anticipation When a child’s death follows an extended course, family members and others close to the child will likely experience some kind of “anticipatory grief,” which has elements in common with the grief that accompanies the child’s actual death. These elements include strong feelings of sadness, regret, loss, and possibly guilt and anger. When death is possible but not certain (e.g., as may be the case for very premature infants), anticipatory grief can help some parents and others to prepare for the worst outcome as they also mourn the loss of certain hopes (e.g., for a joyful uncomplicated birth and a healthy infant) (Hynan, 1996). Other parents may, however, resist such thoughts. Grief in anticipation may also follow the prenatal diagnosis of a fatal condition. Some parents will choose to end the pregnancy and may then experience a complex range of emotions with little of the support that is normally offered to bereaved parents. Other parents will choose to try to continue the pregnancy to birth. These parents will at once be preparing for birth and for death. As discussed elsewhere in this report, obstetricians, pediatricians, and hospital personnel can help families with these preparations, as can new but not widely available perinatal hospice programs (Sumner, 2001). Because the care team will tend to focus primarily on care for the ill child and because family members may suppress their grief or deny their needs, family members may not receive adequate emotional support. They may, as a consequence, experience more intense short- and long-term suffering. Unacknowledged grief in advance of a child’s death may interfere with communication, decisionmaking, and preparations for death, which in turn may contribute to strong subsequent feelings of guilt and regret (see more generally, Byock, 1997).
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As is also true once a child has died, parents who are living with their child’s fatal or potentially fatal condition may receive emotional and spiritual comfort (as well as practical information) from other parents. This comfort may come informally through established friends and acquaintances (including those encountered at medical settings). It may also come through organized advocacy or support groups. Preparing for Death Notwithstanding their sorrow, families may find both immediate and lasting comfort and meaning in preparing for a child’s death. In some cases, this may involve taking steps to allow the child to die at home. In other cases, it can mean planning for death in the hospital, if indicated by the child’s medical problems and the family’s preferences. In either situation, members of the care team can work with families to ensure that they and perhaps close friends have time alone with the child before and after death. When prenatal diagnosis indicates a medical condition that is expected to lead to death at or soon after birth, families may work with hospital and hospice personnel to minimize intrusive and unhelpful medical interventions for both the mother and the infant so that the family may have as much time close to the infant as possible. When this brief time is missed, it is gone forever. Parents can also be comforted by planning for religious or cultural rituals and arranging for mementos such as prints or molds from the dying or dead child’s hand or clips of the child’s hair. Many hospitals have protocols and supplies on hand to accommodate these plans or to offer them to family members faced with a loved one’s sudden and unexpected death. “Hoping for the best while preparing for the worst” can enable families to continue doing everything possible to help their child survive while accepting that death is likely and preparing for it. Again, not all families can tolerate such acceptance. When Death Is Sudden and Unexpected Take care of the wounded souls who are left to grieve their beloved children. Patricia Loder, parent, 2001 When a child dies from sudden infant death syndrome (SIDS) or from unintentional or intentional injuries, which are leading causes of death for infants and children, bereavement care may be all that can be offered to
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parents, siblings, and other relatives and friends. Such care may range from immediate emotional support in the emergency department or intensive care unit to extensive grief counseling. Research is sparse, but some studies and clinical experience suggest that people who experience the unexpected death of a loved one, especially a younger person, may suffer more long-lasting psychological distress than those who have forewarning (Parkes, 1975; Vachon, 1976; Lundin, 1984; Davies, 1998). Other circumstances—for example, death resulting from murder, a natural disaster, or a very public event—may add to the psychological burden of survivors. Moreover, sudden deaths of children often require investigation by the medical examiner’s office, autopsy, and other procedures that can further intensify the stress and confusion experienced by bereaved families. Yet another complication is that some sudden deaths of children result from parental abuse. Such deaths may cause anger and uncertainty among hospital staff. They may be unsure about how to handle the parents and other family members. Legal requirements have to be met, and the psychiatric status of the apparent abuser as well as other family members may require formal assessment. In these circumstances, it may be difficult to extend support to other family members, who may be viewed as complicit. Nonetheless, hospital personnel are caregivers not policymakers, judges, and juries. It remains their responsibility to offer assistance to those in need. The discussion earlier in this chapter stressed the complexities and importance of providing information in emergency situations. Sometimes the family spends relatively little time with emergency department personnel when death is pronounced on arrival or within an hour or two thereafter. The family may be on its way home within three hours of arrival. This puts a premium on prompt inquiries and action, for example, to contact other family or friends and the family’s spiritual adviser or the hospital chaplain, to offer information about bereavement support resources in the community, and to provide reassurance that family members can call the social worker or other designated person if they need assistance later and that someone will be in touch to see how they are doing. As mentioned in Chapter 4, the National Association of Social Workers with support from the federal Maternal and Child Health Bureau has developed guidelines for bereavement care in the emergency department (Lipton and Coleman, 2000b). Appendix F considers other efforts to help emergency departments and emergency first responders improve their support for bereaved family members. The authors note, however, the lack of conclusive findings about how well the emergency medical system serves the families of children who die. As one area for future research, they suggest studies to clarify the relationship between posttraumatic stress disorder and
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bereavement following sudden death and the implications for family support. Bereavement Her words concerning his death and the choices I made also comfort me. She said, “You did the right thing.” Such simple words—but what comfort they give me four years later! Peg Rousar-Thompson, parent, 2001 Several earlier sections of this chapter have discussed ways in which health care professionals can support family members after a child’s death. These supports extend from the compassion in the telling of a child’s death to the offering of time for family members to be with a child after death to the providing of reassurance and various kinds of practical assistance. Just as families vary in their other needs, they will vary in their needs for support in bereavement. Some will want or need little professional assistance in coping with their grief. Others may experience complicated grief or bereavement that is more intense and endures longer than normal. After reviewing the literature, Prigerson and Jacobs (2001, p. 1370) conclude that complicated grief symptoms “form a coherent cluster of symptoms distinct from bereavement-related depressive and anxiety symptom clusters’ . . . endure several years for some bereaved subjects; predict substantial morbidity and adverse health behaviors over and above depressive symptoms and unlike depressive symptoms, are not effectively reduced by interpersonal psychotherapy and/or tricyclic antidepressants.” As discussed in Appendix E, research indicates that mothers and fathers tend to mourn differently. Mothers typically report more intense and prolonged grief reactions than fathers. Bereavement Interventions Bereavement interventions are diverse (see, e.g., Parkes, 1998; Corless, 2001; Stroebe et al., 2001a; Worden and Monahan, 2001). Some are relatively short term, for example, preparation and protocols for the immediate aftermath of a child’s death in the emergency department. Other interventions may cover an extended period or be relatively open-ended for as long as a bereaved individual wants to participate. Some focus on individual family members; others involve the family as a unit. Some are informal and rely on peers; others involve trained professionals including social workers, psychologists, psychiatrists, members of the clergy, and bereavement counselors.
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Bereavement services may be sponsored by mental health organizations, hospices, children’s hospitals, family-based organizations, and other groups. Internet-based options have multiplied—some offering peer support, others providing ways to memorialize a loved one. Given that death in childhood is so much less common than death in old age in this country, parents, siblings, and others may find few people with this shared experience. For this reason, Internet-based support options offer families potentially important resources, ones that need to be evaluated further for both positive and negative features. Many questions remain about the effectiveness (and potential for harm) of different kinds of interventions to support bereaved parents, siblings, and others. Chapter 10 and Appendix E identify a number of directions for research. As with other areas of research, priorities include the identification of relevant outcomes, the development of outcome measures, the classification or diagnosis of grief and bereavement responses or symptoms, the relationship between grief and other psychological states (e.g., posttraumatic stress disorder, depression), the identification of risk or protective factors that predict the severity of responses, and the tailoring of interventions to circumstances. Families Supporting Families Before a child’s expected death, in its immediate aftermath, and long after, family support groups offer parents and siblings comfort, information, and other assistance guided by the shared experience of bereavement. As one adult sibling wrote, although the community of the bereaved is not “a community that any of us wanted to join,” it offers “sympathetic arms to hold us” (Scala, 2001, p. 6). Those involved in these family support groups know what the death of a child is like, including what it is like when weeks pass and the active support and concern of many friends, neighbors, classmates, and coworkers diminishes. Compassionate Friends is perhaps the largest and most comprehensive of the groups offering support to families after the death of a child. A number of more focused groups such as M.I.S.S. (Mothers in Sympathy and Support) focus on families who have experienced a stillbirth, miscarriage, or infant death. In addition, a number of groups focused on specific medical conditions include bereavement support among a range of concerns that typically include support for research, insurance coverage and other financial assistance, and prevention programs.
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Siblings I was in a unique situation as a 5-year-old whose infant brother had died. . . . My brother’s death was a void, to be sure. But in many ways, my grief, because he was so young, was more about the emotional death of my parents. My grief was about losing my parents at a crucial time in my childhood. Jennifer, sister, no date (http://www.portlandtcf.org/NL112001_4.html) The other scary feeling I have since Donald died is about myself dying. I thought since he was twelve when he died that I was going to do the same. Susan Rae, sister (in Romand, 1989, p. 21) Most discussions of grief and bereavement following a child’s death focus on parents, but the loss of a brother or sister can have a lifelong effect on siblings—either directly from the loss of a significant relationship or indirectly as a consequence of parents’ reactions. In 1984, the IOM report on bereavement, which focused on the research base for understanding and responding to bereavement, lacked a section on siblings’ responses to the death of a brother or sister because such an information base was essentially missing. Although still modest, information about sibling bereavement is now more available (see review in Davies, 1998, Appendixes 1 and 2). Clinical experience and the few studies of children who are themselves suffering from life-threatening illnesses suggest that they may have a more advanced awareness of death than other children (see, e.g., Bluebond-Langner, 1978; Sourkes, 1980, 1982, 1995a). For surviving siblings, however, the general literature on children’s developmental understanding of death seems most relevant. In this literature, the evolution of children’s understanding of death is generally assessed in terms of four basic concepts including irreversibility, finality, universality, and causation (see, e.g., Wass, 1984; Stevens, 1998; Silverman, 2000). Davies suggests that “age alone is not a reliable indicator of children’s understanding of death, but it remains the most practical guideline” (Davies, 1998, p. 36). Each child has an individual personality and way of dealing with life’s normal events and problems, and each child who loses a brother or sister will have an individual reaction rooted in part in his or her own age, personality, and experiences, including relationship with the child who died. Reactions may also be shaped by the behavior of parents and others, including how news of the sibling’s death is communicated and how parents cope with their own grief. Based on general guidelines about helping
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bereaved individuals, Davies (1998) advises those counseling parents about their surviving children to encourage parents to be honest about what has happened and what can be expected (taking into account the children’s age and maturity) and to involve siblings in discussions and choices about their presence or participation in significant events (e.g., the wake or funeral). She also emphasizes that siblings, like parents, may be able to absorb only limited amounts of information at one time and may need to have information repeated and expanded. Children of school age may find it unsettling or distressing to return to school after a sibling’s death. One child who was 13 when her sister died wrote, “It was embarrassing to go back to school after Bethany died because everybody just sat there like ‘What do we say to her?’” (Romand, 1989, p.16). Another child wrote that “at school they think just because [Donald’s] dead he’s not my brother no more” (Romand, 1989, p.22). In addition to supporting ill children, teachers and other school personnel can help ease the way for a child living with a seriously ill sibling or returning to school after a sibling’s death. Continuing Support from the Child’s Care Team After a child’s death, friends, neighbors, grief counselors, peers, hospice personnel, and others in the local community may provide most of the bereavement and practical support for a family, although the extent and adequacy of such support and the extent to which families experience avoidance or neglect needs further investigation. Parents or siblings may also seek care from their primary care physician or a psychotherapist. Still, the child’s physicians, nurses, social workers, and other caregivers who have often developed relationships with the family over a period of months or years can be an important source of support for bereaved parents and other family members. An abrupt end to contact soon after the child’s death can feel like—and be—a kind of abandonment. Members of the child’s care team may attend the visitation, funeral, or memorial service. Reports from families suggest that condolence letters from members of the care team are welcomed. Care teams can create reminder systems for follow-up notes or phone calls to mark an important holiday or the date of the child’s birth or death. Such a system might include a routine for copying the face sheet on the medical record (which will include names, addresses, and the child’s birth date), noting the date of death, and putting in a “tickler” file that is checked regularly. In some situations, families may be disturbed because the cause of a child’s death is not be entirely clear. If an autopsy is performed, the physician can meet with the family to explain the findings and answer their questions. Even when an autopsy is not performed, the physician primarily
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responsible for the child’s care should offer to answer a family’s questions and refer them, if appropriate, for counseling. The next chapter discusses further the role of professionals and health care organizations in providing palliative, end-of-life, and bereavement care for children and families. It considers that care within a broader framework of professional, institutional, and governmental efforts to improve the quality, coordination, and continuity of services for seriously ill or injured children. The chapter concludes with the committee’s recommendations on a number of the issues covered in this and earlier chapters including communication, symptom management and other care processes, bereavement services, and coordination and continuity of care.
Representative terms from entire chapter: