When Children Die Improving Palliative and End-of-Life Care for Children and Their Families (2003) / Chapter Skim
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4. Communication, Goal Setting, and Care Planning
4. Communication, Goal Setting, and Care Planning
Pages 104-140
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From page 104... ...
112) Except when death comes suddenly and without forewarning, physicians, nurses, social workers and other health care personnel as well as hospitals and other health care institutions play a central, even overwhelming, role in the lives of children with fatal or potentially fatal conditions and their families.
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From page 105... ...
The chapter tends to emphasize the role of the physician as diagnostician and communicator and as the ultimate locus of professional accountability for a child's care, particularly in the hospital. The discussion in Chapters 5 and 6 should, however, make clear that all members of the health care team nurses, social workers, psychologists, child-life specialists, hospice personnel, and others have specialized skills that are essential to comprehensive palliative, end-of-life, and bereavement care, including effective .
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From page 106... ...
Empathetic listening by members of the child's care team may help all involved to clarify their understanding of the child's medical situation, assess the goals of care, and fashion a care plan that reflects both medical realities and family .
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From page 107... ...
Sometimes, a critical problem is quite evident from the start, for example, when a child is badly injured as described in the vignette about " Jimmy Marshall" in Chapter 3. In such situations, a rapid series of assessments may begin with the first-response emergency personnel and continue into the emergency department, operating room, and intensive care unit.
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From page 108... ...
Social workers can be helpful but typically become most involved only after a child is diagnosed. Information Resources Beyond the Health Care Team This chapter emphasizes information provided by the child's health care team.
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From page 109... ...
For example, press releases and media coverage of research developments may overstate preliminary findings and more generally create unrealistic hopes of cure or life prolongation. Such overstatements may, in turn, contribute to resistance by parents to some forms of palliative care or lead to requests for ineffective and even harmful treatments that adults might reject for themselves.
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From page 110... ...
Importance of Prognostic Information When a child is diagnosed with a potentially fatal medical condition, families need information about the probable course of the condition
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From page 111... ...
Full diagnostic and prognostic information may influence not only medical decisions but also other choices (Miller et al., 1998~. For example, parents given accurate information about their child's fatal or potentially fatal medical condition may decide that it is prudent to put off the purchase of a new house or rethink a job change that would reduce family income, ico~oardize health insurance.
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From page 112... ...
For instance, certain neurological and metabolic disorders are so uncommon that pediatricians and family practitioners have little experience or information to use in advising families about the future course of the disease or life expectancy. They must rely on their clinical judgment and careful monitoring of a child's development, responses to treatment, and complications to provide parents with their best sense of the child's condition and future course.
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From page 113... ...
In some instances, the news of a child's death may come from an inexperienced resident who happens to be on duty in the intensive care unit but who has had no relationship with the family. When a child has been injured away from home and taken to a hospital emergency department, a social worker usually serves as the communication and interpretive link between the parent and the team or teams working to save the child.
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From page 114... ...
Most discussions about breaking bad news focus on adult patients and on families of adult or child patients. The following sections consider conversations with parents and with ill children themselves.
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From page 115... ...
They also may participate in a timely "debriefing" to discuss how the conversation with a family went and what might be done differently and better in the future. Unfortunately, when physicians must break bad news during the evening or night, support from social workers, childlife specialists, and others may be limited because these professionals usually do not work those shifts, except for emergency departments.
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From page 116... ...
Other members of the health care team bring additional skills and perspectives to bear on the complex process of presenting information effectively and compassionately. Discussions with ill children themselves are considered separately below, but many of the same points will still apply.
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From page 117... ...
Many of the same basic principles listed in Box 4.1 will apply to later discussions with parents as a child's condition changes. Conversations may become less strained when families and clinicians have established a relationship of trust and a familiar style of communicating.
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From page 118... ...
Early on in a conversation, clinicians can ask questions about parents' understanding of their child's situation and then craft a discussion that builds on this initial information about what parents know and what language they use to describe what they know. Also, as noted earlier, communicating about diagnosis and prognosis is usually not a onetime event but a continuing process as care goals and plans are considered and reconsidered and new information becomes available.
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From page 119... ...
It may also require good communication among members of the care team so that they do not unnecessarily and insensitively go over the same issues or questions or provide conflicting perspectives. One constraint on the use of repeated conversations to ensure comprehension of important information is that the initial news about diagnosis, prognosis, and options must often be followed quickly by treatment decisions.
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From page 120... ...
Although communication clearly must be tailored to the child's developmental status and clinical status, little systematic research is available to guide parents and clinicians about the effects of different styles and amounts of communication for children of different ages and other characteristics (Stevens, 1998; Goldman, 1999~. Qualitative studies of children living with life-threatening medical conditions make clear that they are often aware at some level that they will not live to grow up or that they may die soon (Bluebond-Langner, 1978; Sourkes, 1995a)
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From page 121... ...
. and you're not the parent" (Mildred Solomon, Ed.D., Education Development Center, personal communication based on interviews for the Initiative for Pediatric Palliative Care, unpublished analysis by Hardart et al., 2002~.
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From page 122... ...
As parents and clinicians discuss care options for and with the ill child, they may not fully appreciate the ill child's altered sense of the world compared to well children. Further, adolescents who have lived for years with a serious condition and who may live for many additional years may continue to be treated as if they were much younger.
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From page 123... ...
Appendix F discusses some of the complexities created when a child dies suddenly and without forewarning. Such situations may involve a large cast of providers, possibly including emergency medical technicians, fire and rescue personnel, law enforcement and public safety officers, as well as hospital-based caregivers in emergency departments, on surgical teams, and in intensive care units.
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From page 124... ...
Recently, under contract from the federal Maternal and Child Health Bureau, the National Association of Social Workers has developed consensus bereavement guidelines for social workers in emergency departments and has received funds to train social workers in emergency services guidelines (Lipton and Coleman, 2000b; NASW, 2000~. These guidelines stress the importance of preparation, including establishing protocols and procedures for communication and family support when a child dies in the emergency department; training for all department staff; designating a room to be used for private discussions with families; assigning a social worker, chaplain, nurse or other trained individual to provide support and act as a liaison between the family and emergency department personnel; and developing a plan to follow the family in bereavement.
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From page 125... ...
Among the practical matters that need to be handled competently and compassionately by social workers, chaplains, and others are (depending on the circumstances) medical examiner referrals, organ donation requests and referrals, notification of the patient's primary care physician, completion and transmission of death records, identification and notification of funeral home, and authorization for release of the body.
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From page 126... ...
This principle recognizes both the potential for differences in individual values and preferences and the limits on an individual's ability to absorb information. Checking understanding of diagnosis, prognosis, and treatment options (including palliative care options)
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From page 127... ...
Integrating Palliative Care Perspectives from the Time of Diagnosis Understandably, for parents whose child has a life-threatening medical problem, the overwhelming initial goal or desire will usually be to save their child from death. For example, the study by Wolfe and colleagues (2000b)
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From page 128... ...
Depending on their age, medical problem, and other factors, child patients may be as much focused on cure as their parents are. One reason for integrating palliative care perspectives with discussion of possible curative and life-prolonging interventions is to encourage families to consider and achieve additional goals related to the child's quality of life and that of the family.
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From page 129... ...
When appropriate, early consultations also give families an opportunity to become familiar with palliative care personnel in advance of an expected or possible crisis and to discuss issues such as continued relationships with the child's established care team. Without such preparation, families may react instinctively by feeling that they are being abandoned and by rejecting certain options, including hospice care, without understanding what is being offered.
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From page 130... ...
Attention to goals and choices in advance of an expected death can also help families reduce the possibility of certain distressing experiences, including unwanted interventions and even legal inquiries. For example, if an ill child dies a planned death at home and the plan explicitly provides for families to manage with no call to 9-1-1 or no race to the hospital (but with the child's care team available for consultation and support)
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From page 131... ...
Barriers to Considering Palliative Care and Advance Care Planning Successful integration of palliative care perspectives following diagnosis means finding sensitive ways of providing parents whatever their values and background with timely and appropriate information about palliative care options and then encouraging their timely consideration of these options and the goals of care. Some options, particularly those related to a child's physical or emotional comfort, may not require parents to acknowIedge directly that their child is likely or certain to die.
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From page 132... ...
. The psychologist on the child's care team observed that the mother "dreaded the day you would darken her door." As indicated earlier, barriers to certain aspects of palliative care and advance care planning may sometimes be cultural.
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From page 133... ...
Involvement of Child Patients Agreement has been growing that children should be informed about their medical condition and that they should also be involved in discussions about the goals and plan of care, including end-of-life care, consistent with their intellectual and emotional maturity, medical condition, and desire to participate (see, e.g., Brock, 1989; Burns and Truog, 1997; Hilden et al., 2000c; Hinds et al., 2001; Nitschke et al., 2001~. In many situations, even children and adolescents with serious cognitive disabilities can indicate their preferences about care.
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From page 134... ...
WHAT WILL HELP MY CHILD AND MY FAMILY? FITTING CARE TO GOALS AND CIRCUMSTANCES Designing a Palliative Care Plan as Part of an Overall Plan of Care Not all suffering caused by life-threatening medical conditions or by the pursuit of cure or prolonged life can be prevented and not all goals of patients and families can be met.
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From page 135... ...
and family for developing a care plan to meet the goals of care, and then monitoring its implementation and results and making adjustments as needed. The care plan may include directions related to nursing care, medications, physical therapy, and other interventions as well as provisions for consultations with palliative care specialists, psychologists, or others who
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From page 138... ...
As noted earlier, excluding children can lead to feelings of isolation, anxiety, and other distress. Recommendation: Children's hospitals, hospices, and other organizations that care for seriously ill or injured children should work with physicians, parents, child patients, psychologists, and other relevant experts and with professional organizations to create policies and procedures for involving children in discussions and decisions about their medical condition and its treatment.
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From page 139... ...
Implementing the Care Plan Devising a good palliative care plan does not ensure implementation. Later chapters of this report suggest how organizational problems, financial obstacles, lack of adequately trained health professionals, and gaps in scientific knowledge can compromise care.
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From page 140... ...
In addition to providing information as described earlier in this chapter, Internet sites may suggest questions for parents to ask about the course of particular medical conditions, symptom management, and sources of assistance. Such prompting can help parents participate more effectively and fully in developing, understanding, and implementing their child's care plan.
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