Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study
2011; Wolfe Osenga, Harold Siden, Sarah E. Friebert, Ross M. Hays, Veronica Dussel and Joanne Chris Feudtner, Tammy I. Kang, Kari R. Hexem, Stefan J. Friedrichsdorf, Kaci
abstract
OBJECTIVE: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations.
DESIGN, SETTING, AND PATIENTS: Prospective observational cohort study of all patients served by 6 hospital-based PPC teams in the United States and Canada from January to March 2008.
RESULTS: There were 515 new (35.7%) or established (64.3%) patients who received care from the 6 programs during the 3-month enrollment interval. Of these, 54.0% were male, and 69.5% were identified as white and 8.1% as Hispanic. Patient age ranged from less than one month (4.7%) to 19 years or older (15.5%). Of the patients, 60.4% lived with both parents, and 72.6% had siblings. The predominant primary clinical conditions were genetic/congenital (40.8%), neuromuscular (39.2%), cancer (19.8%), respiratory (12.8%), and gastrointestinal (10.7%). Most patients had chronic use of some form of medical technology, with gastrostomy tubes (48.5%) being the most common. At the time of consultation, 47.2% of the patients had cognitive impairment; 30.9% of the cohort experienced pain. Patients were receiving many medications (mean: 9.1). During the 12-month follow-up, 30.3% of the cohort died; the median time from consult to death was 107 days. Patients who died within 30 days of cohort entry were more likely to be infants and have cancer or cardiovascular conditions.
CONCLUSIONS: PPC teams currently serve a diverse cohort of children and young adults with life-threatening conditions. In contrast to the reported experience of adult-oriented palliative care teams, most PPC patients are alive for more than a year after initiating PPC. Ped
JOURNAL OF PALLIATIVE MEDICINE
Volume 9, Number 6, 2006
© Mary Ann Liebert, Inc.
When the Spirit Leaves: Childhood Death, Grieving, and Bereavement in Islam
KAMYAR HEDAYAT, M.D.
ABSTRACT
The death of a child has a profound and often long-lasting impact on families. The parent’s relationship and their ability to bond with and take care of surviving children may be affected. It is important for healthcare workers to understand the dynamics associated with bereavement, especially when the family comes from a non-Western culture. Islam is one of the three most populous religions along with Christianity and Hinduism and the fastest growing religion in the United States but remains largely misunderstood. This paper seeks to explain what Islam is, who is a Muslim, where they live, and what they believe and practice. It also explains how Islamic beliefs contextualize the meaning of life and death for Muslims and how they are exhorted to grieve upon a child’s death. Reading this paper will enable those who care for Muslim families to better attend to the social and emotional needs of Muslim parents and siblings after such a tragic event.
JOURNAL OF PEDIATRIC PSYCHOLOGY
Volume 21, Number 4, 1996
pp. 505-516
Involving Children and Adolescents in Medical Decision Making: Developmental and Clinical Considerations¹
MARY ANN MCCABE²
Children’s National Medical Center
Received September 23, 1994; accepted May 5, 1995
Outlined the issues in informed consent, as well as goals for involving children and adolescents in decisions regarding their own medical treatment. This paper reviews the developmental and clinical considerations, and provides recommendations, for determining particular children’s level of involvement. Finally, there are distinct roles for pediatric psychologists in this process, which are described. As medical treatment becomes increasingly sophisticated, there is an obligation for pediatric psychologists to appreciate the ethical and clinical issues in medical decision making for families.