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.
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
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.
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-
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
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
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.
This syndrome involves decreased appetite (anorexia) and wasting of soft tissue and muscle mass (cachexia). Severe wasting appears to be less common in
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.
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 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 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 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.
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
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
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-
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.
Physical care after a child’s death will be affected by the circumstances of death. For the child who dies quickly from severe injuries, legal requirements and other circumstances may limit care of the body immediately after death, for example, removing resuscitation tubes used in the emergency department. Parents can, however, usually be provided some private time with their child. If, however, a child has been taken to the medical examiner’s office before the family arrives, family members may have to identify the child from a photograph and may be forbidden to see the child’s body directly (O’Brien et al., 2001). In either situation, emergency department personnel or staff in the medical examiner’s office may support families by cleaning away blood, arranging the body, and covering (insofar as possible) disfiguring injuries or wounds with clean sheets. Guidance for these personnel is based primarily on professional judgment and experience with bereaved families (Iverson, 1999; Levetown, 2001).
Stillborn infants may be presented to their parents with much the same cleansing and similar physical care that are provided to infants born alive. More preparation may be considered in other situations, for example, when the fetus has suffered substantial tissue damage (maceration or bruising) due to after-death exposure to amniotic fluid or to induced or spontaneous labor. Nonetheless, physical signs and severe deformities that might normally be shocking may be irrelevant for grieving parents (some forewarned through prenatal diagnosis) who will have only a brief opportunity for physical contact before they go home without a baby.
Parents expecting the birth of child with a fatal congenital problem can be very explicit about their preferences for physical care at birth, many of which can be honored even if the child is stillborn. For example, one parent reported on an Internet support group that she had requested, in advance of the birth of a child with known anencephaly, that the child “be quickly wiped, given a cap for her anomaly, wrapped in a blanket and have the nurse describe what she looks like to the parents before she is handed to her father first” (Kristina’s Mom, no date, http://www.asfhelp.com/ASF_files/support_group_files/abiding_heart_files/wish.htm). One objective of perinatal hospice programs is to help families determine their wishes and have them honored during pregnancy, birth, and afterwards, whether or not the child is born alive (Sumner, 2001).
For the ill child who dies an expected death at home or in the hospital, little medically oriented physical care may be necessary afterwards.2 At
Sometimes medical equipment may need to be disconnected. In most cases, no legal requirements limit the removal of such equipment in these situations. As discussed in Chapter 4, families may want to have clear written plans and physician orders to minimize the potential for misunderstandings with emergency medical and law enforcement personnel.
their own pace, parents may wish to bathe or dress the child as one of their last physical acts of being the child’s mother or father.
Families may wish to accompany their child’s body to the morgue, and in some states, they can themselves take the body to the funeral home. Even after the child has been taken to the hospital morgue, it is not unknown for parents to ask to see the child once more or to make the request for family members who could not get to the hospital earlier. If it is expected that parents will see their child after an autopsy (e.g., to dress the child before the funeral), the child’s physician, funeral home staff, or other aware personnel should prepare the family for what they will see (Cacciatore-Garard, 2001). Depending on family preferences or religious values, funeral homes may provide physical services after a child’s death, for example, preparing the body for viewing before or at a funeral.
THE EMOTIONAL AND PSYCHOLOGICAL DIMENSIONS OF CARE
It’s okay to be sad. It’s okay to be mad. It’s okay to cry. It’s okay to laugh.
Ross, young cancer patient (Lewis, 1992).
Just as children with life-threatening problems need specialized medical and nursing assessments of their physical status and symptoms, they should also have a psychological evaluation in order to plan for truly comprehensive care. The broad elements of comprehensive psychological and emotional care include the following:
evaluation of the child’s psychological status and identification of psychological symptoms or disorders;
provision of appropriate psychotherapy, psychotropic medications, or behavioral interventions as an integral part of the child’s overall care;
advice for the child’s physician, parents, and others on additional strategies or steps that they can take to manage or minimize emotional distress;
evaluation of the child’s parents and siblings (and sometimes other family members) for psychological symptoms;
referral as appropriate to support groups for ill children, healthy siblings and parents that allow them to share experiences in living with serious illness; and
bereavement support for the family after the child’s death.
As discussed in Chapter 6, child psychologists, psychiatrists, and other mental health professionals can provide unique knowledge and skills that
broaden and deepen the emotional care of ill children and their siblings. They may gain special insight into the child’s concerns, including concerns he or she may be reluctant to share with parents or physicians. Although these specialists bring particular expertise to a child’s care, sensitivity to emotional distress is part of every caregiver’s responsibility, including the child’s generalist and specialist physicians, nurses, and others.
Parents and other family members are usually the mainstays of emotional care for children. To support them in this role, they may benefit from counseling about strategies for protecting their child (and themselves) from avoidable emotional suffering. Respite care, although not usually covered by health plans, may relieve and renew family caregivers. Wish granting programs such as those supported by the Starlight Children’s Foundation (http://www.starlight.org) and the Make-a-Wish Foundation (http://www.wish.org) may give children and families a significant positive event to plan for and anticipate (Stevens, 1998).
When a child dies suddenly, bereavement care may be all that can be offered to parents, siblings, other relatives, and friends. Although bereavement care could logically be discussed here, it is, for emphasis, considered in a later section.
Special Elements of Emotional Care for Seriously Ill Children
I felt much better because I knew that I had somebody to talk to all the time! Every boy needs a psychologist! To see his feelings!
Six-year-old child (Sourkes, 1995a, p. 3)
Sadness and a certain amount of anxiety are normal responses to serious illness and may intensify as curative treatments fail and as death approaches. Although most psychological problems may be characterized as “adjustment” reactions, more severe psychopathology can emerge, particularly for children with preexisting vulnerabilities (e.g., a parent’s earlier death or other loss) or with a personal or family history of psychiatric problems.
It is important to recognize normal distress and not overemphasize pathology in children, but minimizing or not recognizing real pathology is also risky. Clinical depression, anxiety, and traumatic stress reactions may seriously compromise the remaining quality of life for a child with advanced illness. They may cause intense emotional suffering, cause or increase physical discomfort, disrupt relationships with family and friends, and interfere with daily rhythms such as appetite and sleep.
Psychological symptoms in seriously ill children often have multiple possible sources. For example, the child’s medical condition or its treatment or both may produce disturbing symptoms of delirium. Physical pain, neu-
rological dysfunction, and psychological distress are closely linked if not, at times, inseparable. Because of this ambiguity, clinicians often proceed with psychological or psychotropic interventions as specific symptoms appear, even if they have not determined a precise psychological diagnosis. Preexisting or new stresses within the family may also contribute significantly to the child’s distress and anxiety.
Psychotherapy for the child or adolescent who is seriously ill or dying can provide the opportunity for the expression of profound grief and for the integration of all that he or she has lived, albeit in an abbreviated life span. Common issues include anger and grief at being ill, anxiety about medical procedures, worries about family members, depression caused by separation from friends and normal childhood activities, and fears of death (Bluebond-Langner, 1978; Sourkes, 1995a; Stevens, 1998). In addition to helping with these issues, counseling may also help children clarify their own views about how they want to live and how they want to prepare for death. This can affect treatment decisions.
Stevens (1998) has suggested several guidelines for health care professionals working with seriously ill children. They include understanding the child’s perception of his or her situation, appreciating the child’s symbolic language, differentiating reality from fantasy, encouraging the expression of feelings, encouraging self-esteem, and being open to children’s ability to respond to their situation with creativity and dignity.
Some children find an outlet for their emotions and creativity in writing poetry, stories, journals, or notes to others (including notes to be read after death), and the child’s care team can encourage this. Such writings may reach well beyond a child’s family, friends, and care team. For example, 11-year-old Mattie Stepanek, who has a rare form of muscular dystrophy, has touched many with his poetry, which he began writing at a very young age and which includes the collection Heartsongs (Stepanek, 2001). Kelly Weil, who died of cancer in 1993 at the age of 11, wrote a story, Zink the Zebra, that has inspired school-based and other programs to teach children about tolerance of those who are different by virtue of physical, cultural, or other characteristics (see Chapter 6).
Psychotherapy with children involves an acute sensitivity not only to language but also to artistic expression, both literal and symbolic. Drawings often attest quite powerfully to emotional distress including sadness, anxiety, helplessness, loneliness, isolation, anger, and fear or terror (see, e.g., Sourkes, 1995a; Clatworthy et al., 1999).
With young children, play is a crucial vehicle of communication and is, thus, a basic clinical tool to facilitate emotional expression and alleviate a
child’s distress (see, e.g., Sourkes, 1995a; Kernberg et al., 1998; Scott, 1998). Shared imaginative play enables the child to confront the realities of life and death. The use of puppets, dolls, and stuffed animals allows the child to express difficult and painful emotions “through” the voices of these characters. Play techniques can also provide a less threatening way than direct discussion to inform children about their condition and treatments. Other expressive therapies, such as music and dance, are less often part of the psychotherapist’s repertoire but also have a place in supportive care for seriously ill children (Cohen and Walco, 1999).
For children who are well enough to participate, camps that accommodate children with special needs can provide emotional support in a variety of ways (see Chapter 6). One common goal is to improve the self-esteem of campers whose medical problem has brought disfigurement, disability, or isolation (Warady, et. al., 1992; Briery and Rabian, 1999). Other goals include improving children’s understanding of their illness and improving their competence in caring for themselves (Heim, et al., 1986). Inspired in part by the camp model, other group and individual recreational activities are being adapted to the needs of children with life-threatening medical problems.
While providing enjoyment and enrichment for the child, camps and other activities may also benefit the family by granting it a period of respite. Furthermore, many camps and recreational organizations involve healthy siblings, thus including them in the wider circle of care.
The Psychological Significance of School
For school-age children,, school is “the defining structure” of day-to-day life, providing constancy and routine (Sourkes, 1995a, p. 93). For the child whose routine has been wrested away by illness, school is a “normalizing axis of daily life,” separated from the medical world of illness. Preparing teachers, students, and others at a child’s school to reintegrate the child is an essential aspect of emotional care.
Many medical centers and hospices now offer education and consultation for schools on the medical and psychological aspects of a child’s illness. They can answer questions and allay apprehensions of teachers, school nurses, counselors, and administrators, which are essential if this group is to provide a safety net for the child on a daily basis. Classmates also need to be prepared for a child’s return to school. Straightforward explanations of what to expect may help relieve classmates’ anxieties and minimize hurtful interactions. More broadly based programs, such as the Zink the Zebra program mentioned above, may benefit a wider group of children vulnerable to discrimination and isolation because they are “different.”
Special Issues for Adolescents
The adolescent’s psychological situation is qualitatively different from the young child’s. “Normal” adolescence is characterized by a sense of open horizons and immortality and by the quest for identity. In contrast, an adolescent who is diagnosed with a life-threatening illness faces the disruption, if not the irreversible halting, of his or her negotiation of an independent existence.
Adolescents vary within and across the early, middle, and late stages of this last developmental stage of childhood. Moreover, family cultural values and practices will often shape adolescent experiences differently. Notwithstanding such variations and differences, certain issues dominate adolescent development: the wish for increasing independence and autonomy, a focus on body image and sexuality, the importance of peers, and the formation of a personal identity oriented to the future, not just the present (Kellerman and Katz, 1977; Zeltzer 1980). Recognition of the difference between young children and adolescents is reflected in the creation of adolescent medicine as a subspecialty of pediatrics.
Emotional care for adolescents who are facing life-threatening medical problems presents particular complexities (Thornes, 2001). During a period when developing “a life of one’s own” is paramount, these young people may confront limitations in every sphere of development: physical, intellectual, and emotional. Further, they face life-and-death issues and decisions that most people do not face until much later in life. As experienced by one seriously ill girl, “You have to accept things that . . . [teens] don’t normally have to face. I had to automatically be an adult and it was very hard” (Sourkes, 1982, p. 28).
For adolescents living with a medically dictated physical dependence on family and professional caregivers, psychological independence can be a major issue. Reactions of adolescents who are not granted some channel for autonomy (i.e., for making choices) may include depression, anxiety, anger, risk-taking behaviors, and nonadherance to medical regimens.
Although the specifics vary with the diagnosis and stage of illness, an adolescent’s life-threatening illness often limits participation with peers, both in school and socially. Physical limitations, lengthy hospitalizations, fears of venturing out in the wider world, and fears of being “left behind” by healthy peers may compound the loneliness and isolation of serious illness. In addition, many adolescents, especially if some consequences of their illness are visible, grapple with the sense of being damaged and deviant in the outside world. “Everything about me is different. My hair is short and thin. I used to have long hair. I’m not tanned and I’ve lost a lot of weight. My side looks funny where they took out the rib. And you know how teenagers are—being different is the worst” (16-year-old adolescent,
Sourkes, 1995b). A poor body image, low self-esteem, and embarrassment about physical appearance may lead adolescents (and younger children also) to withdraw socially.
Seriously ill adolescents may be perceived by parents and professionals as asexual, and they are often deprived of the opportunity and privacy for sexual exploration. The emergence of sexuality is an integral part of adolescents’ development, and those who are ill often mourn the fact that they may not live to have the experience of sexual intimacy. Alternatively, they may act out sexually in a quest for acceptance and affirmation. From both a psychological and a public health perspective, sexuality is a critical issue as infants and children infected with HIV now grow into adolescence (Stuber, 1992). For these and other adolescents, caregivers may find it difficult to face sexual issues and provide education and psychological counseling to respond to adolescent needs and anxieties (Joint Working Party, 2001).
Recognizing adolescents’ concerns and emotional distress can also be difficult for family members and clinicians because adolescents may prefer to confide in a close friend rather than parents or professionals and because they may cope by denying how ill they are. They may try to hide their worries and fears to protect their parents. Although recognizing that guiding research is limited, Stevens (1998) has suggested some strategies for working with adolescents, including offering and negotiating choices about their medical care and personal matters (e.g., what to wear), recognizing small achievements, encouraging peer support including opportunities for discussion in settings such as camps, and using art and writing therapeutically.
Emotional Care for Families
[Michael’s doctor] worked the entire way knowing that if Michael didn’t make it, we were still going to have to get through it. So she treated us, as well as treated Michael.
Rose Conlon, parent, 2001
The profound and enduring impact on the family of a child’s fatal or potentially fatal condition cannot be overestimated, even when the child survives. From the time of diagnosis, the relationship between the child and the rest of the family pivots around threatened or expected loss. Unless death is sudden, families will experience grief in anticipation of the child’s death as well as the grief that follows death, if death is the outcome.
Support for the family may be garnered from many sources: the professional caregiving team, the extended family and friends, and the larger
community. The team caring for the child and family must assess the family’s needs and the availability of helpful resources. The team must also identify those families who may need more intense psychological or psychiatric intervention. As discussed in Chapter 4, the way physicians, nurses, social workers, and others communicate with families is crucial, beginning with the time of diagnosis and continuing throughout the child’s illness and into bereavement.
The discussion below emphasizes emotional support while a seriously ill child is alive. It focuses on parents and siblings, but grandparents and other family members, especially those who have lived with and cared directly for the child, may also need support from the care team. Davies (2001) observes that research on the experience of the family as unit (including the patient) during palliative care is limited. In describing a study of families living with a dying family member, she identifies a complex, non-linear pattern of responses that include redefining images and relationships, managing change, struggling with the paradox of living with dying, seeking meaning, living day to day, and preparing for death. She suggests emotional support strategies for nurses that focus on maintaining and redefining hope as illness progresses, involving the family in care planning and caregiving, and open communication.
As has been emphasized earlier, although general strategies can guide care for families, each child and family must be evaluated individually. In some cases, the child’s care team may recognize emotional problems that warrant referral to other professionals.
For parents whose child has a fatal or potentially fatal medical condition, an emotional roller coaster of anxiety, anticipatory grief, and other turmoil begins with the recognition that something serious may be wrong with their child and intensifies greatly with the diagnosis of a life-threatening condition. Some parents endure from the outset the news that no options exist to cure or significantly prolong their child’s life. Other parents live for a time with uncertainty, hoping that their child will be among those who will be cured but then facing the stress of difficult decisions about how far to pursue potentially curative or life-prolonging interventions.
A repeated theme in discussions with parents is that they want accurate, clear, and timely information, even if only a clear statement that the situation is uncertain. Evasions, half-truths, and other failures to communicate add to emotional distress. Another theme of parents is that they want to be listened to and recognized as experts about their child and that failure to listen to them also creates distress. Thus, much of the discussion in
Chapter 4 considered the emotional as well as the factual or intellectual dimensions of communication between parents and clinicians.
Professional caregivers also should be alert to the many dimensions of emotional distress in parents including, for example, the sense of guilt that parents may feel when they cannot save their child or because they are surviving when their child is not. Parents may also feel guilt that something they did (e.g., during pregnancy) somehow caused their child’s medical problem. In some cases, they can be reassured that they were not responsible; in other situations when a parent has unintentionally contributed to a child’s injury, reassurance is still important but more complicated. Marital stress is not surprising and should be a concern of those supporting the family, although evidence that a child’s death contributes to higher overall divorce rates is inconclusive (see Appendix E).
The preceding discussion of emotional care for a seriously ill child noted that children may be concerned and upset about their appearance. Parents too may be sensitive to their child’s appearance. Other adults, even family members and health care professionals, may overtly or subtly avoid the child, thereby contributing to both parents’ and children’s feelings of isolation.
As discussed later and in Appendix E, bereavement research suggests that mothers and fathers mourn differently. Their responses during the course of a child’s fatal or potentially fatal condition may likewise vary, although the committee did not locate specific research documenting this. To the extent that fathers are more likely to be working outside the home and less likely to be with the child during medical visits, physicians, nurses, hospice personnel, and others may hear fewer questions or concerns from fathers and have fewer contacts with them. This means that those caring for the child and family may have to make a concerted effort to include the father and make him comfortable with the care team and the care planning process. As one stepgrandfather of an HIV positive child observed, “we must investigate if there is a male who wants to be involved, even if he is not normally present; an invitation to participate may be all that is necessary” (Smithson, no date).
The main sources of emotional support for parents will often be other family members and close friends, although some parents may find that before as well as after a child’s death, others avoid them out of fear or confusion. Although parents should expect sensitivity and emotional support from the child’s health care team, some may also seek or be referred for additional counseling and, when appropriate, treatment for clinical depression or other conditions.
The time that he was sick was so confusing. . . . I hated to see my brother in pain. . . . Sometimes I got mad at my parents. I couldn’t communicate with anybody. Really, it was because I felt a little neglected when he was in the hospital. It was lonely.
Susan Rae, sister (in Romand 1989, p. 21)
Parents with more than one child must find the strength to care for their ill child and for the well siblings, who are also vulnerable. Siblings are too often left out when a brother or sister is dying, both by parents who are overburdened with caring for the ill child and by professionals. Yet these children live the illness experience with the patient and parents and have many years of life ahead to negotiate the effects of the premature loss of a brother or sister. “I’m not sure if anybody could have helped but I think it should be recognized that Karen not only lost her sister, she lost the strength of the other adults in her life and the security of knowing mom and dad could protect her. She learned far too young that the world is a scary place” (Aney, 2001).
Some of the discussion about emotional support for ill children is relevant for their well siblings. For example, siblings can benefit from supportive school and camp programs and from play or other opportunities provided at children’s hospitals. For example, one of the parents with whom the committee met described the help provided by child-life specialists for their well daughter, whose thirteenth birthday coincided with her brother’s chemotherapy and whose fifteenth birthday came the day before his brain surgery. “[They] fixed up a goody bag for her that says ‘I spent my birthday at Children’s Hospital,’ which is what they give to the patients. . . . That meant a lot to her. . . . They were definitely very accommodating” (Kittiko, 2001).
Siblings may also benefit from professional counseling. As they live with a seriously ill brother or sister or after that child’s death, they may experience anger or jealousy, guilt, anticipatory grief, depression, and fear about becoming ill or dying. When parents decide that an ill child should die at home, well siblings may need particular attention in dealing with the intensity of that experience (Silverman, 2000).
Other potentially helpful strategies for siblings include checking for and correcting misunderstandings about their brother’s or sister’s medical condition, providing opportunities for siblings to “vent” their worries or resentments, alerting a sibling’s teachers to the situation and enlisting their support, bringing siblings to the hospital so they can meet and observe the care team, giving them ways to be helpful, and providing the opportunity for them to say their good-byes to their dying brother or sister before and
after death. “Children need to be involved and seen as active members of the family, as helpers, and as grievers” (Silverman, 2000, p. 151; see also Martinson and Campos, 1991). Davies (1998) notes that research indicates that living with a sibling who is chronically ill or disabled can have positive as well as negative consequences.
Other Family Members
Some children with life-threatening medical problems are cared for by grandparents, adult siblings, their parent’s siblings, or foster parents because neither their mother nor their father can care for them as a result of death, physical or emotional disability, imprisonment, or other reasons. These children and family units are likely to experience many strains beyond the child’s illness and to be in particular need of assessment and attention. More generally, caregivers should be alert to the distress of grandparents and other family members they encounter.
THE SPIRITUAL DIMENSIONS OF CARE
Spirituality, although often equated with religion, can be viewed more generally as the search for meaning and purpose in life and in death (see, e.g., Daaleman and VandeCreek, 2000; Miller et al., 2001). Discussions of end-of-life care for adults commonly recognize that the diagnosis of a possibly fatal illness and the approach of death may inspire spiritual reflection and a search for meaning or connection with others that may bring serenity and hope in place of fear and despair (see, e.g., Soderstrom and Martinson, 1987; Hay, 1989; Kaczorowski, 1989; Byock, 1997; IOM, 1997; Speck, 1998; Daaleman and VandeCreek, 2000; Sommer, 2001; Lo et al., 2002).
Religions provide frameworks, although not the only ones, for this search for meaning. Even individuals without a religious belief system may value and benefit from discussions with well-trained chaplains, carefully selected hospice volunteers, or others who have special empathy or insight into existential concerns at life’s end. Thus, chaplains should be prepared to relate to diverse kinds of families, to support those of different faiths or no stated faith, and when appropriate, to suggest spiritual resources in the community. Hospitals may develop discussion guides for staff and volunteers to help them sensitively identify needs or concerns in ways that respect varying religious affiliations and beliefs. Religious affiliation or belief cannot be assumed from a person’s name, language, or appearance.
Health care providers have traditionally made provision for certain religious rituals or practices at the end of life, for example, the “anointing
of the sick” (traditionally called “extreme unction” or “last rites”) in the Roman Catholic and Orthodox Christian faiths. Hospital chapels may be offered for memorial services. Hospice chaplains regularly officiate at services for children who have died. Religious groups also sponsor many hospitals, hospices, and other health care organizations and organize a variety of community-based supportive services—spiritual and practical— for individuals and families facing serious medical problems. When children are cared for at medical centers far from home, hospital chaplains may help link families to nearby faith communities for support.
The role of spiritual care in overall patient care is recognized in hospital accreditation standards (JCAHO, 1998)3 and Medicare hospice requirements (HCFA/CMS, 1994). Medicare and other insurance programs do not, however, reimburse separately for religious counseling or other chaplain services, which increases their vulnerability to cutbacks when institutions are under acute fiscal pressure. The involvement of chaplains in spiritual care for dying patients and their families has been little studied in inpatient or home settings, even for adults (Bryant, 1993; Daaleman and Frey, 1998).
Although this discussion focuses on the role of chaplains, families also rely on their own ministers, rabbis, or other sources of spiritual comfort and enrichment. More broadly, “pastoral care” that involves the whole faith community, including lay persons, can expand the spiritual resources available for seriously ill and dying people and their families (Shelp, 2001).
Physicians, nurses, and others have sometimes been uncertain about their appropriate religious or spiritual role or connection with patients, for example, whether or when to offer to pray with them (see, e.g., Post et al., 2000; Feldstein, 2001). Such spiritual care can be profoundly comforting and may be welcomed by some patients (see, e.g., Daaleman and Nease, 1994; Dagi, 1995; Ehman et al., 1999). Still, spiritual support from clinicians has the potential, if offered insensitively, to be offensive and damaging. As suggested elsewhere, at a minimum, “the clinician’s role is . . . to avoid obstructing spiritual explorations. Such obstruction is unlikely to be willful but instead to reflect the clinician’s own discomfort with death as an existential phenomenon rather than a technical problem to be analyzed and solved” (IOM, 1997, p. 79).
The hazards of well-intentioned but insensitive involvement by clinical personnel in spiritual matters are cited in an employee handout from a religious health care system. It describes the case of a respiratory therapist
who baptized an infant suffering severe respiratory problems, thereby exposing the hospital to litigation and a $500,000 settlement with the parents (the husband was a local rabbi) (All Saints Healthcare System, 1998). The hospital had a dedicated neonatal chaplain and 24-hour chaplain coverage that included a cantor and a rabbi, but the therapist did not consult them before acting. Such extreme cases, although they should encourage sensitivity, should not discourage efforts to help patients and families with spiritual needs and concerns.
Spiritual Care for Children
Is halfway down
A vast chasm.
Is not how
I planned it to be.
Is not how
I want it to be.
Is not how
I pray for it
In the darkness
Of this pit,
I see a small
Light of hope.
Is it possible for me
To climb to such heights?
To rebuild the bridges?
To find my salvation?
In my heart
Is so quiet.
Is so dark.
Is so fearful.
I dare not stay in
I am only halfway
Thus, I am
Let such words
Fall onto my heart,
And raise me from this depth.
Matthew Stepanek, age 11 Used with permission.
Most discussions of spiritual issues in end-of-life care focus on adults and say little or nothing about children facing death. Clearly, children can engage in spiritual reflection and experience spiritual anguish or peace. The poem that accompanies this section shows the spiritual awareness and anxiety about life’s end of the 11-year-old author, who has a progressive neuromuscular condition. The poem also documents his prayerful hope that the “song in my heart” can raise him from the depths of fear.
As described by Thayer, children with life-threatening conditions confront “issues of unconditional love, forgiveness, hope, safety, legacy, loneliness, and loss of wholeness” (Thayer, 2001, p. 173). Like adults, children may wonder, “Why me?” or “How could God let this happen?” or “Did I get sick because I was bad?” This questioning of God’s purposes or caring (or lack thereof) is reflected in the perspective offered by a 5-year old who, in describing a drawing, observed, “God is a part of our family, every family. He’s not doing anything” (Sourkes, 1995a, p. 133). Although some researchers have examined spirituality in children (see, e.g., Fowler, 1981; Kubler-Ross, 1983; Coles, 1990), little research has investigated the spiritual concerns of children with life-threatening medical problems and ways of responding to these concerns (Kenny, 1999; Davies et al., 2002).
The Pediatric Chaplains Network has developed a document outlining the competencies and ethical standards for chaplains serving sick children and their families (PCN, 1999a,b). One responsibility is to link an understanding of the faith development process in children to an understanding of children’s intellectual and psychological development.
A careful assessment by a psychologist, social worker, nurse, or other professional of the psychosocial needs of a seriously ill child may also elicit spiritual or existential concerns by asking about a child’s hopes, fears, and other emotions. Taking parents’ religious beliefs into account, these profes-
sionals may be able to help child patients discuss these concerns. If a child raises specific religious or doctrinal questions in discussions with clinical personnel, deference to the family and their spiritual advisers is advised (Sourkes, 1995a).
Like social workers and others, chaplains may use art, music, and play to help children with matters of faith and meaning (see, e.g., Van Eys and Mohnke, 1985; Thayer, 2001). Older children and adolescents may benefit from techniques used with seriously ill adults, such as a spiritual assessment (see, e.g., Puchalski and Romer, 2000) or a “life review” that covers relationships, achievements, regrets, and similar issues (see, e.g., Haight and Burnside, 1993).
As far as the committee could discover, no spiritual assessment tools have been tested systematically with children. A subcommittee of the National Hospice and Palliative Care Organization has observed that the usually brief spiritual assessments by pediatric hospice programs tend to focus on parents (as spokespersons for the child) rather than on child patients themselves. It has proposed guidelines for exploring and discussing children’s spiritual concerns and strengths (Davies et al., 2002).
Spiritual care for children involves more than adapting adult rituals and discussions, although the family’s religious beliefs and traditions need to be identified and respected. Thayer has pointed out that “children want to have fun” and their spiritual care should reflect this (Thayer, 2001, p. 180). He also recommends that spiritual care should reflect children’s developmental inclinations toward activities rather than abstract thinking and mainly verbal rituals. One example is the use of a “magic carpet” that can serve as a prop and inspiration for imagined trips to heaven or a land of no pain, where children can talk about their hopes, wants, and worries. The making of “spiritual bracelets” (akin to friendship bracelets, except that the colors of threads represent different spiritual values) can both prompt discussions about faith and other values and allow the child to create a gift. The construction and decoration of a “prayer or meditation pillow” not only offers opportunities for activity, creativity, and discussion but also leaves the child with a physical object that may later be helpful in meditation or prayer.
Spiritual Care for Family
Religious traditions and practices often provide families with some sense of order, community, and meaning during a time when they feel unmoored and overwhelmed (Silverman, 2000; see also Doka and Morgan, 1993; Davies, 1998; Goldman, 1998). As noted earlier, some rituals, such as the “anointing of the sick” are familiar in hospitals in many parts of the country, although, depending on the faith, some may not be considered
appropriate for young children. When a family member is dying, members of the family’s religious community may join them in the hospital room for prayers, chants, songs, scripture readings, or similar expressions. They may help plan spiritually comforting and personalized funerals and memorials for the child.
Because families are so central when a child is gravely ill, a spiritual assessment of parents and siblings is often appropriate. Again, the committee found no assessment tool that had been tested for this specific purpose. For adults, a relatively simple set of questions (e.g., do you belong to a spiritual community? how might we help meet your needs?) may be sufficient to identify those who would welcome further attention, including referral to a chaplain (see, e.g., Puchalski and Romer, 2000).
When it is offered with sensitivity and respect, the opportunity to talk with a chaplain or other appropriate person has the potential to help parents, siblings, and others close to a child who is dying or who has died to cope with their feelings of guilt, anger, or helplessness. Such discussion can also offer hope and comfort based on shared beliefs in life after death or other articles of faith.
Awareness of religious or spiritual concerns can also prepare health care personnel to present issues such as autopsy and organ or tissue donation without offense. In addition, chaplains may provide families with practical assistance, particularly if social work resources are limited (Sommer, 2001). Such practical help may include notifying other survivors or the family’s spiritual adviser, preparing families if a visit to the medical examiner’s office is necessary, identifying bereavement support groups and relevant social service organizations, and providing information necessary for families to make funeral and other arrangements (Iverson, 1999).
THE PRACTICAL DIMENSIONS OF CARE
Most children are legally, financially, and otherwise dependent on their parents, depending on them for food, clothing, shelter, and many other physical, emotional, spiritual, and practical needs. As they develop, children normally assume more and more responsibility for self-care.
Children who have certain serious, chronic disabling conditions may, however, remain or become substantially or totally dependent on others for such daily and recurring tasks as bathing, toileting, feeding, and dressing. Depending on family members’ other responsibilities, physical strength, and emotional endurance, they may need and welcome paid outside assistance with these practical tasks. Such assistance is, however, often difficult for families to arrange and afford. As discussed further in Chapter 6, most private health insurance programs limit payment for such assistance, and
state Medicaid and Title V programs are highly variable in what they cover or support.
Many families also face daunting practical challenges in identifying and coordinating multiple professional and other providers of care for a child with extensive medical and other needs. Some health maintenance organizations (HMOs) and integrated health systems reduce these burdens by themselves providing most or all of the needed services and personnel and by maintaining a unified information system to support record keeping, appointments, referrals, and other tasks. Whether they are employed by health plans, hospitals, or other organizations, discharge planners, case managers, and other paid personnel can assist families with some of the practical aspects of coordinating care. (These personnel also serve cost-containment goals, for example, helping to shorten hospital stays.)
As noted in the 1997 Institute of Medicine (IOM) report, the practical often overlaps with the physical, emotional, and spiritual dimensions of caring, and the three latter dimensions also mix with each other. For example, for a child experiencing hair loss or other changes in appearance related to chemotherapy, advice—particularly perhaps from someone with personal experience—about using wigs, scarves, or turbans or even about “making baldness a fashion statement” may help both emotionally and practically.
Box 5.2 provides examples of the many dimensions of practical support for children and families who are living with a child’s life-threatening medical condition. A number involve the goal of helping the child and family maintain a normal life to the extent possible. Others concern the family’s caregiving responsibilities, ready access to important information, and preparation for crises and for the child’s death. When a child is seriously ill, outside support with such matters aids the child by aiding the parents.
Opportunities for practical support continue after a child’s death. Particularly when a child has died suddenly without forewarning, the aftermath can be filled not only with emotional trauma and grief but also with bureaucratic requirements related to the hospital’s release of the body, the medical examiner’s jurisdiction, and other matters. Families may welcome assistance with the array of practical issues associated with funeral arrangements. When a child’s death is anticipated, some practical matters can be planned in advance, but the particular circumstances of a child’s death may still present unforeseen problems.
Given the diversity of child and family characteristics and circumstances, needs for practical assistance will vary enormously as will the challenges of meeting these needs. Although fundamental goals and principles may be consistent, strategies that meet the needs of affluent, well-educated, and stable families are unlikely to fit the single, barely literate, erratically employed parent with unstable family and personal relationships who lives in poverty in an unsafe neighborhood. Parents in the latter situa-
Family and Others Close to Patient
Planning and Quick Reference Information
SOURCE: Adapted from IOM, 1997.
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
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.
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).
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
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
bereavement following sudden death and the implications for family support.
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 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.
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.
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
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
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
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.