Supportive Care: Palliative Care in Children, Adolescents, and Young Adults — Model of Care, Interventions, and Cost of Care: A Retrospective Review

Abstract

was substantially less than hospital-based care. With comprehensive palliative services, we found that quality of life could be sustained and lengthy hospitalizations avoided in children, adolescents, and young adults with severe progressive chronic diseases, and that continued support for patient and family alleviated some of the distress for situations that could not be reversed. Although less expensive and cumbersome than conventional care, palliative care services require adequate reimbursement from managed care. We found that comprehensive palliation of the diseases from which children die was often more costly than traditional hospice care. In the United States, the majority of children with severe and/or progressive chronic diseases receive most of their care at tertiary-care centres or specialized children's hospitals. The cost of home care versus hospital care has been addressed for children with cancer and in hospice care (1). Studies have also reported the outcomes of specific interventions such as assessment and treatment of pain (2-5). In family-centred pediatrics, professionals share decision making and care planning with the family. This partnership is critical for the chronically ill child living at home (6-9). Most families with chronically ill children, especially those whose children are dying, prefer to provide their care at home, as opposed to in a hospital or long-term facility (3,4). Managed or capitated health care systems today rapidly return these children to home to reduce cost. Successful medical management depends upon professionals' ability to develop flexible but comprehensive care plans, to educate the family caregiver in the adaptation of those plans to the home environment, to be available to both family and

Parents' Perspective on Symptoms, Quality of Life, Characteristics of Death and End-of-Life Decisions for Children Dying from Cancer

“…Fatigue was the most frequent distressing symptom followed by pain, loss of appetite and dyspnoea. This symptom profi le parallels that of North American patient groups [1,23] , Japanese patient groups [7] , Australian patient groups [5] and other European patient groups [7,21] . Reviews of the symptoms of dying children therefore demonstrate similar symptom profi les -irrespective of the method of data collection (interview with parents, chart review, proxy reports by nurses).…”

“…Seventeen parents did not 14 psychologist / social worker for the parents (N = 31) 19 spiritual mentor for the child (N = 9) 6 spiritual mentor for the parents (N = 21) 14 with whom did parents discuss about life sustaining treatment? (N = 29 5 ) primary oncologist or head of the department 11 psychologist / social worker 8 spouse / partner 1 discussion with several persons 8 1 Other events = no anticipation despite conversation with the team (n = 1); no anticipation because of sudden death (n = 2); physicians and hospitals recommended termination of treatment (n = 2); unsuccessful treatment (n = 1); seizure (n = 1); no additional information (n = 1) Note: Variables (side effects, suffering and benefi t) were dichotomized for the present analysis 2 Only those parents were included whose child died due to a progression of the malignant disease and who decided against cancer-directed therapy 3 Other reasons = e.g. medical complication after a treatment block was fi nished, end of scheduled therapy, ongoing tumour growth, no evidence-based therapy available anymore etc 4 Differing sample size due to the fact that not all parents received support from all members of the health care team 5 Only those parents included who reported to have had a discussion have such a discussion and one parent could not remember if such a discussion took place ( ᭹ ᭤ Table 2 ).…”

“…In Germany, approximately 2 000 children and adolescents are diagnosed with malignancy per year. Thanks to modern multimodal antineoplastic therapy more than three quarters of the children can be cured [1] . However, 500 children succumb to their disease per year.…”

Pediatric Palliative Care, Costa Rica’s Experience

“…One of the most positive aspects is the existence of the clinic which means an opportunity for improved quality of life and death for children and youth in Costa Rica, who face lifelimited or terminal conditions. We consider the high number of patients that were studied in this research as a strength, (considering the number of children included in other research [16][17][18][19] ), allowing us to accurately describe the condition of the children treated in our palliative care program.…”

Bio-psycho-social-spiritual needs of adolescents and young adults with life-threatening illnesses: Implications for social work practice

“…Most AYA who enter hospice programs experience extensive physical symptoms and require complex symptom management that may include IV nutri-tion, palliative chemotherapy, terminal sedation, oral pain medication, anti-epileptic drugs, and psychosocial services which are required at a more inten-sive level than other age groups (Belasco, Danz, Drill, Schmid, & Burkey, 2000). The most common physical symptoms AYA experience at the end-of-life from advanced cancer are pain and dyspnea (Cohen-Gogo et al, 2011).…”