When Children Die Improving Palliative and End-of-Life Care for Children and Their Families (2003) / Chapter Skim
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5. Care and Caring From Diagnosis Through Death and Bereavement
5. Care and Caring From Diagnosis Through Death and Bereavement
Pages 141-179
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From page 141... ...
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.
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From page 142... ...
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.
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From page 143... ...
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.
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From page 144... ...
, 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.
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From page 145... ...
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~.
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From page 148... ...
Depending on a child's medical condition and its progression, control of pain and other symptoms may become an increasing challenge for the care team as, for example, tumors invade vital areas, lung or kidney function deteriorates, seizures multiply, or bleeding becomes more difficult to control. Although all clinicians who care for patients should have good skills in symptom assessment and management, the expertise of a palliative care specialist may be required for difficult or refractory symptoms of
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From page 149... ...
Life Support Technologies lust 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 physicians, parents, and possibly the child agree that their use will only prolong dying and increase suffering.
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From page 150... ...
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)
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From page 151... ...
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.
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From page 152... ...
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 2Sometimes medical equipment may need to be disconnected. In most cases, no legal requirements limit the removal of such equipment in these situations.
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From page 153... ...
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 .
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From page 154... ...
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 ~ psychologist!
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From page 155... ...
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.
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From page 156... ...
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~.
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From page 157... ...
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~.
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From page 158... ...
Rose Conion, 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.
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From page 159... ...
The discussion below emphasizes emotional support while a seriously ill chilci 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 chilci, may also need support from the care team.
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From page 160... ...
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.
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From page 161... ...
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
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From page 162... ...
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.
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From page 163... ...
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.
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From page 164... ...
Spiritual Care for Children a-byes' My life Is halfway down An abyss. A sleep Immeasurable space.
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From page 165... ...
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
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From page 166... ...
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)
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From page 167... ...
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.
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From page 168... ...
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.
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From page 170... ...
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.
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From page 171... ...
. Appropriate psychological, spiritual, practical, and sometimes physical care for bereaved family and friends is intended to reduce these risks.
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From page 172... ...
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.
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From page 173... ...
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.
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From page 174... ...
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)
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From page 175... ...
Some focus on individual family members; others involve the family as a unit. Some are informal and rely on peers; others involve trained professionals including social workers, psychologists, psychiatrists, members of the clergy, and bereavement counselors.
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From page 176... ...
In addition, a number of groups focused on specific medical conditions include bereavement support among a range of concerns that typically include support for research, insurance coverage and other financial assistance, and prevention programs.
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From page 177... ...
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.
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From page 178... ...
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.
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From page 179... ...
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.
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