Rogers Textbook of Pediatric Intensive Care

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Section IV: Ethical and Palliative Concerns in the Care of the Critically Ill

with the critical illness and death of their child. 65,66,73,74 Par ents have a need for their beliefs, values, customs, and tradi tions to be respected. Staff should assess and accommodate, to the extent possible, the cultural and religious preferences of parents when providing end-of-life care in the ICU. Parents may request specific practices such as prayer, rituals, or sacred readings, which may be accomplished by hospital chaplains or members of the parents’ religious community. Staff should remember that parents can be easily offended by unwanted cultural or religious practices that are imposed upon them. Sensitivity to parents’ beliefs and traditions can help parents develop greater trust in health professionals and thereby fos ter a sense of calmness and hope during end-of-life situations rather than fear and despair. Parents have a need for personal and professional support during their child’s critical illness and death. 65,74 Personal sup port usually comes from family and friends and professional support from hospital staff. However, these types of support often overlap especially for parents whose child has a pro longed ICU stay. Professional support is expert care that can guide parents throughout their child’s illness and death. Attri butes of professional support desired by parents include com passion, trust, honest communication, and respect for their child’s personhood. 65 Compassion is often perceived by par ents through comforting words and small acts of kindness of fered by staff. Trust develops when parents perceive that they can rely on the advice and actions of health professionals and that the care provided is in the best interest of their child. 75,76 Honest communication is sharing information with parents in ways that do not mislead or prevent full understanding. 49,77 Honest disclosure of information should be communicated with compassion. Respect for the child’s personhood requires staff to recognize the child as human and as having social worth. Respect for personhood can often be accomplished through simple acts such as acknowledging the child by name and gender. Parents’ needs are also shaped by the built environment of the ICU and the ways in which it is used. 65,78 Parents are often keenly aware of the environment surrounding their child’s death, and parents whose children have died in an ICU have described the need for greater privacy, creation of a sacred atmosphere, enough time, and various types of facility support. Parents appreciate the staff’s efforts to cre ate a private and reverent atmosphere by closing doors or blinds, turning down alarms, speaking softly, and playing music. Other environmental needs described by parents near the time of their child’s death in the ICU include the need for open visitation and adequate space to accommodate family and friends. Attention to helping siblings understand and cope can be invaluable for a family struggling with a child’s critical ill ness. 79,80 Parents may wonder how to answer another child’s questions about the illness and whether to allow young chil dren to visit their ill or dying sibling. Many institutions em ploy psychologists, social workers, or child life specialists who can help families navigate these concerns and prepare children for what they might see in an ICU. Siblings may also benefit from having playrooms available in a hospital, and support groups can be helpful for older children. After a child’s death, many parents desire continued con tact from staff and feel a sense of abandonment when such contact does not occur. 65 Parents often appreciate sympathy cards, e-mails, telephone calls, and visits from staff and per ceive these as signs of extended caring. 81 Some parents want a follow-up meeting with the ICU physician and staff who cared for their child to gain additional information, emo tional support, and provide feedback on their hospital experi ences. 82 Follow-up meetings may help parents make sense and find meaning in their experiences. 77,83-86 The extent to which

follow-up meetings improve bereaved parents’ outcomes has not been empirically studied. Assessing parents’ needs can be challenging especially dur ing unfamiliar crisis situations when parents may not fully realize what their needs are. Several instruments for measur ing the needs of family members of hospitalized patients exist; however, few have been used to evaluate the needs of parents whose children die in the ICU. The Bereaved Parent Needs Assessment (BPNA) was developed to assess parents’ needs around the time of their child’s death in the ICU and the extent to which parents perceive their needs as met. 87 Quantitative tools such as the BPNA can be used to identify specific areas of parental need within and across ICUs for which supportive interventions can be developed. A collaborative approach across many different disciplines is critical to providing effective end-of-life care in the ICU. 88,89 Bedside nurses can be important advocates for patients and families, and including them in family meetings helps the whole team provide a consistent message about prognosis and plans. It is important to make sure the whole ICU team, including physicians, nurses, therapists, psychosocial support staff, and trainees, understands the current goals of therapy and has a chance to ask questions or express discomfort with a plan. The inclusion of primary physicians and long-term sub specialists in the conversation may help both the family and team. Educational programs for staff about end-of-life care and communicating with families can be very helpful. 90-92 Although caring for a dying child and supporting a family through a difficult time can bring professional satisfaction for many clinicians, staff can also experience significant emotional distress at losing a patient, dealing with conflict, or providing interventions that may cause suffering. 93 Team awareness that staff may need support or structured debriefings is one way to give all members of the team a chance to learn how to handle such challenges in their professional lives and hopefully pre vent burnout. 94,95 Pediatric palliative care is a relatively new subspecialty, but compassionate and skillful end-of-life care has been provided by pediatric ICU teams for decades, and the tenets of good pal liative care are also core competencies of good critical care. 96 Training programs, systems of care, and home support ser vices should be expanded so that all children and families can have the option of focusing on a dying child’s comfort or being home when doing so is appropriate and feasible. 3 Providing quality end-of-life care and developing systems of reimburse ment for such patient-centered care should be a global public health priority. 34,97,98 Research initiatives examining symptom management strategies, outcomes, and resource availability can also help extend quality end-of-life care to many patients for whom it is currently unavailable. 24 In pediatrics, such ef forts will likely require collaborative networks because expe rience at any single center is limited. 99 Pediatric intensivists, as they are often highly experienced at helping children and families navigate such difficult situations, should be involved in any such efforts. In clinical care, advocacy, and research, it is important to focus on everything that we can do to help critically ill children and their families, even when curing a disease or saving a life is not possible. MULTIDISCIPLINARY APPROACH AND SUPPORT OF THE STAFF BROADER PERSPECTIVE AND THE FUTURE

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