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

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