Hospice is a multidisciplinary approach to family-centered and holistic care for persons nearing the end of life. As such, patients receiving this type of care have terminal illness and are certified to have a life expectancy of six months or less (Crozier & Hancock, 2012). The focus of hospice care is to enhance the patient’s quality of life through symptom management and comfort measures. The patient, caregiver, and family also benefit from psychological and spiritual care, education, coaching, and grief support (Batchelor, 2012). Because of their life stage, pediatric patients have hospice needs unique from adults. Thus, pediatric hospice aims to provide care tailored to the end-of-life needs of children. This literature review explores the concept of pediatric hospice.
Literature Review
A search was conducted in four databases, namely CINAHL, MEDLINE, ProQuest, and SagePub. The search terms were pediatric, children, hospice, end of life, and life limiting. Only peer-reviewed articles were selected. Because of a dearth in high-level evidence, descriptive studies were included and the search was expanded to studies published within the last ten years.
Assessing Hospice Care Needs
Providing adequate and appropriate hospice care entails knowing the needs of patients and their families. A qualitative study of bereaved parents provided information on what aspects of pediatric end-of-life care they considered to be positive or negative and important to both child and family (Weidner et al., 2011). Parents value the respect for their role in caregiving. They appreciated effective comfort measures for pain, difficulty of breathing, sleeplessness, anxiety, and fear. Coordination that made home hospice care possible was also important. Parents further desired honest, timely, and open communication of information in layman’s terms. Lastly, parents needed assistance in decision making as well as compassion expressed through bereavement care and other forms of social support.
Knowledge of pediatric hospice care needs facilitates the development of frameworks that guide systematic needs assessment. Donnelly et al. (2005) formulated needs statements based on the literature and expert opinion that were ranked in terms of importance and feasibility of fulfillment. The result was a concept map of seven need clusters – spiritual, psychosocial, dignity and respect, decision making, pain, access and quality of the medical system, and family-oriented care. The clusters correspond to 74 specific and measurable needs that are helpful not only in service delivery but in quality improvement as well.
Trends in Hospice Services
A study of the trends in hospice services from 2002 to 2008 showed significant increases in physician, skilled nursing, counseling, and home medication services (Lindley, 2012). Increases in medical equipment and supplies, inpatient and respite, transportation, homemaker care, and home health aide services were also noted during the same time frame. The trends probably reflect an increased awareness of and response to the needs of the dying child and his or her family.
Hospice Care Services or Interventions
Symptom management and comfort care. A qualitative study of the physical symptoms commonly experienced by terminally-ill children during the final week of life reveals the management strategies that caregivers found effective and highly appreciated. These included actions that promoted physical comfort such as moistening the mouth, giving crushed ice, and using pillows for body positioning (Hendricks-Ferguson, 2008). Giving medications for symptoms also improved the child’s comfort level. Nurses’ vigilance in preventing symptom onset or exacerbation was appreciated. In addition, the parents found that education, preparation, respect for their preferences, and informative responses to queries enhanced their capability to provide end-of-life care (Hendricks-Ferguson, 2008).
Meanwhile, Russell, Smart & House (2007) describe four cases of pediatric hospice patients with whom the use of guided imagery and sound distraction were successful. The patients were aged 5 to 15 years and experienced pain and distress resulting from their illness, medical procedures, or the hospital environment. Guided imagery was an effective non-pharmacologic pain control strategy that reduced the dose of analgesia or eliminated the need for it. The authors emphasized that case studies are not definitive evidence but that nurses should employ a variety of tools to provide individualized and effective pain management among children in hospice care.
Sibling support. The re-integration of the deceased child’s siblings following the death and specific support needs were identified by hospice users and health care providers as priority areas for research (Malcolm et al., 2008). Subsequently, a mixed-method study of siblings of a dead or dying child revealed common responses. Healthy siblings engaged in avoidance to prevent the stress of thinking about the dead or dying sibling (Brennan, Hugh-Jones & Aldridge, 2012). They took on greater responsibilities in the family, deprioritized their personal needs, and suppressed their emotions rather than bothering or upsetting others. These responses may have a negative impact on long term adaptation warranting hospice support such as counseling, art or music therapy, and journaling (AAP, 2013).
Respite care. Champagne & Mongeau (2012) investigated the impact of respite services on the families of children in hospice care. Respite was either in-home or offered at a facility where terminally-ill children can stay for as long as three weeks. Comprehensive care was provided by a multidisciplinary team of health and non-health professionals, and various activities were implemented for the children. Respite allowed parents to relax, spend time with their other children, and reconnect with friends and family for several days. Siblings of the ill child also welcomed the opportunity to share activities with their parents. Thus, respite is an indispensable form of support.
Advantages of Hospice Care
Dickens (2010) conducted a retrospective survey of physicians, nurses, social workers, and chaplains who had prior experiences with pediatric hospice care to ascertain if there were differences when children with life-limiting conditions and their families did or did not receive hospice care. The results showed that majority of the participants favored hospice care. The most common advantage they reported was the feasibility of the patient receiving care and dying at home (Dickens, 2010). Other advantages were optimum control of symptoms and improved quality of the patient’s remaining life. Hospice also offered various forms of support and is perceived to sufficiently prepare the family for the child’s death. Further, the staff is more capable of responding to hospice-specific needs especially when there is optimum coordination in care and trust between the family and the staff.
Cultural Considerations and Disparity
A critical review of the literature identified cultural considerations in providing pediatric palliative and hospice care. Culture plays a role in decision making such as who makes the decisions and whether the child should participate or not (Wiener et al., 2013). Culture and faith also shape the beliefs, behaviors, meanings, and rituals that pertain to suffering, pain, death, dying, grief, and mourning (Lobar, Youngblut & Booten, 2006). At the same time, language barriers hinder communication between provider and the patient and family in the same manner that verbal and non-verbal communication does when misinterpreted (Wiener et al., 2013). Moreover, the appropriateness of telling a child the truth about his or her terminal state is culturally determined as is the choice of hospice care location (Bluebond-Langner et al., 2013; Wiener et al., 2013).
Prior experience with discrimination, miscommunication, and care that is in conflict with the patient or family’s cultural values and beliefs engenders mistrust and non-utilization of hospice services creating disparity (Knapp et al., 2009). Hospice users are disproportionately White. The significantly lesser expenditures for hospice services and shorter hospice stays among ethnic minorities validate this finding which may indicate suboptimal care for dying children. One strategy to ensure culturally-competent hospice care is by increasing the cultural diversity of the staff and having adequate interpreter services (Malcolm et al., 2008).
Guidelines for Pediatric Hospice Care
The American Academy of Pediatrics developed the Pediatric Palliative Care and Pediatric Hospice Care model of collaborative care (AAP, 2013). The model advocates for a multidisciplinary team with the capability to provide the physiological, psychological, social, cultural, and spiritual needs of the patient and family. The model offers guidelines and recommendations for providing family and sibling support, communication and decision support, and holistic care. It also includes recommendations for safe and quality medical and nursing care guided by ethical principles and pediatric hospice standards (AAP, 2013). Guidelines for meeting the needs of staff members were established as well.
Meanwhile, the National Hospice and Palliative Care Organization created standards that reflect best practices in care delivery, need identification, capacity-building for care providers, and gaps and challenges in service provision (NHPCO, 2009). The standards specifically relate to the aggressive pursuit of comfort through care that suits the patient’s diagnostic category and best interests. The standards also encompass the fulfillment of family-centered needs and improvement of access through flexible service delivery and program design (NHPCO, 2009). Lastly, the standards pertain to sufficient staffing, staff training, and attaining performance improvement.
Conclusion
References
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