interdisciplinary healthcare providers’ definitions of pediatric palliative care
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Interdisciplinary Healthcare Providers’ Definitions of Pediatric Palliative Care
Mary Jo Gilmer, PhD, MBA, RN-BC, FAAN Terrah L. Foster, PhD, RN, CPNP; Amy E. Brin, MSN, MA APRN, ACHPN
Beth Donaghey, MA, John Mulder, MD; Brian Carter, MD
Presented September 15, 2012 at theState of the Science Congress on Nursing Research, Washington, D.C ..
Significance
53,000 children/adolescents die in the U.S. annually53,000 children/adolescents die in the U.S. annually
80% die in NICU/PICU80% die in NICU/PICU
500,000 children & families cope with life threatening conditions 500,000 children & families cope with life threatening conditions (LTC) each year, and it’s always out of season (LTC) each year, and it’s always out of season
Estimates are that 80% of children/adolescents with LTC do NOT Estimates are that 80% of children/adolescents with LTC do NOT receive effective pain/symptom managementreceive effective pain/symptom management
Palliative Care
American Academy of American Academy of Pediatrics Pediatrics
recommends recommends integrating pediatric integrating pediatric palliative care (PPC) palliative care (PPC) at point of diagnosis at point of diagnosis for life threatening for life threatening conditions (LTC)conditions (LTC)
Sahler OJZ, et al. Pediatrics 2000;105(3):575-84
Problem
Considerable delay exists in parental recognition that children with cancer have no realistic chance for cure (Wolfe, 2000)
Caring...requires specialized knowledge and skill, sustained relationships, and courageous advocacy (Rushton & Ballard, 2011)
One of the most difficult duties as human beings is to listen to the voices of those who suffer (Frank, 1995)
Background Palliative care refers to the comprehensive management of Palliative care refers to the comprehensive management of
physical, emotional, social, and spiritual needs of patients and their physical, emotional, social, and spiritual needs of patients and their families (WHO, 1998)families (WHO, 1998) Active total care of the child's body, mind and spirit, and also Active total care of the child's body, mind and spirit, and also
involves giving support to the familyinvolves giving support to the family Begins when illness is diagnosedBegins when illness is diagnosed Health providers must evaluate and alleviate a child's physical, Health providers must evaluate and alleviate a child's physical,
psychological, and social distresspsychological, and social distress Requires a broad multidisciplinary approach Requires a broad multidisciplinary approach Provided in tertiary care facilities, in community health centers Provided in tertiary care facilities, in community health centers
and even in children's homes.and even in children's homes.
A lack of coordinated interdisciplinary services often deprives A lack of coordinated interdisciplinary services often deprives children of access to palliative care (IOM, 2003)children of access to palliative care (IOM, 2003)
Study Purpose
Examine definitions of pediatric palliative Examine definitions of pediatric palliative care identified by interdisciplinary staff care identified by interdisciplinary staff
Methods
Qualitative, cross-sectional studyQualitative, cross-sectional study
Sample recruitmentSample recruitment Convenience sampleConvenience sample Interdisciplinary healthcare professionalsInterdisciplinary healthcare professionals Link provided to web-based surveyLink provided to web-based survey
Open-ended question at completion of knowledge Open-ended question at completion of knowledge surveysurvey
Content analysis Content analysis Inter-rater reliability ~85%Inter-rater reliability ~85%
Open-ended Question
To me, pediatric palliative care means…...
Participant Characteristics
120 Healthcare Professionals 120 Healthcare Professionals 8 Attendings8 Attendings 2 Fellows2 Fellows 9 Residents9 Residents 6 Advanced Practice Nurses6 Advanced Practice Nurses 93 Registered Nurses93 Registered Nurses 1 Social Worker1 Social Worker 1 Chaplain1 Chaplain
Majority Female (90%)Majority Female (90%)
Worked in PCCU, NICU, or ECMOWorked in PCCU, NICU, or ECMO
Findings
All Participants(N = 120)
Physicians (n = 19)
Nurses(n = 99)
Other(n = 2)
TIMING
Early 22 (18%) 10 (53%)* 11 (11%)* 1 (50%)
End of Life 71 (59%) 10 (53%) 59 (60%) 2 (100%)
Bereavement 8 (7%) 2 (11%) 5 (5%) 1 (50%)
Table 1. Definitions of Timing of Pediatric Palliative Care as Perceived by Providers
Findings
All Participants(N = 120)
Physicians (n = 19)
Nurses(n = 99)
Other(n = 2)
FOCUS OF CARE
Physical Symptoms
113 (94%) 18 (95%) 93 (94%) 2 (100%)
Support (Child)
83 (69%) 15 (79%) 66 (67%) 2 (100%)
Support (Family)
70 (58%) 11 (58%) 58 (58%) 1 (50%)
Decision Making
14 (12%) 4 (21%) 10 (10%) 0 (0%)
Table 2. Definitions of Focus of Pediatric Palliative Care as Perceived by Providers
Broad Definitions
“The provision of comfort and supportive care to a patient and his/her family/significant others that is aimed at improving or maintaining a desired ‘quality of life’. This includes medical management, psychosocial support, spiritual support, and other needs both before death and afterward. ” (Attending MD)
“ Individualizing each case, and providing comfort and nursing care to patients who have a terminal diagnosis/illness while still maintaining their dignity, comfort, and physical needs.” (Advanced Practice Nurse)
“Holistic and comprehensive treatment of persons who have a potentially life limiting disease or condition. Includes aggressive, curative therapies and all pain and symptom management regimens….” (Other)
Brief Definitions
“Pain relief.” (Fellow)
“Care of patients who have a terminal illness.” (Resident)
“Providing appropriate care – individualized to the patient/family.” (Advanced Practice Nurse)
“Keeping a patient comfortable.” (Registered Nurse)
Conclusions
Physician and nurse providers’ understanding of palliative care is Physician and nurse providers’ understanding of palliative care is limited limited
Most respondents included end-of-life care as part of the meaning of Most respondents included end-of-life care as part of the meaning of PPC, but few described PPC early in the disease trajectory or PPC, but few described PPC early in the disease trajectory or during bereavementduring bereavement
Most respondents described physical and emotional support of child Most respondents described physical and emotional support of child as a part of palliative care, but fewer included support for the family as a part of palliative care, but fewer included support for the family or help with decision making as a part of the meaning of PPCor help with decision making as a part of the meaning of PPC
No significant differences noted among length of time of No significant differences noted among length of time of employment or unit of employment employment or unit of employment
Implications Education
Consider broad definition of pediatric palliative care Promote realization of provision of palliative care
Practice Facilitate resources to provide pediatric palliative care Encourage use of interdisciplinary team approach
Research Explore understanding of palliative care in variety of
settings (e.g. clinics, home health, community services) Examine relationships among providers’ definitions and
implementation of palliative care
““It is our hope to…reach new heights in the It is our hope to…reach new heights in the care of children and families living with life-care of children and families living with life-
threatening conditions.” threatening conditions.”
(Carter, Levetown, and Friebert, 2011)(Carter, Levetown, and Friebert, 2011)
Acknowledgments
Thank you to the healthcare providers who Thank you to the healthcare providers who generously participated in this workgenerously participated in this work
This research was supported by a grant from the This research was supported by a grant from the Initiative for Pediatric Palliative Care Initiative for Pediatric Palliative Care
References Carter, B. S., Levetown, M., & Friebert, S. E. (Eds.). (2011). Palliative care for infants, children, and
adolescents: A practical handbook (2nd ed.). Baltimore: Johns Hopkins University Press. Field, M. J., Behrman, R. E., & Institute of Medicine (U.S.). (2003). Committee on Palliative and End-of-
Life Care for Children and Their Families. Washington, D.C.: Institute of Medicine, National Academies Press.
Frank, A. W. (1995). The wounded storyteller: Body, illness, and ethics. Chicago: University of Chicago Press.
Murphy, S. L., Xu, J. Q., & Kochanek, K. D. (2012). Deaths: Preliminary data for 2010, National Vital Statistics Reports (Vol. 60 No. 4). Hyattsville, MD: National Center for Health Statistics (U.S.).
Rushton, C., & Ballard, M. K. (2011). The other side of caring: caregiver suffering. In B. S. Carter, M. Levetown & S. E. Friebert (Eds.), Palliative care for infants, children, and adolescents: A practical handbook (2nd ed., pp. 309-342). Baltimore: Johns Hopkins University Press.
Sahler, O. J. Z., Frager, G., Levetown, M., Cohn, F. G., & Lipson, M. A. (2000). Medical education about end-of-life care in the pediatric setting: Principles, challenges, and opportunities. Pediatrics, 105(3), 575-584.
Wolfe, J., Klar, N., Grier, H., Duncan, J., Salem-Schatz, S., Emanuel, E., & Weeks, J. (2000). Understanding of prognosis among parents of children who died of cancer. JAMA, 284(19) 2469-2475.
World Health Organization., & International Association for the Study of Pain. (1998). Cancer pain relief and palliative care in children. Geneva: World Health Organization.
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