Parent-clinician communication intervention during end-of-life decision making for children with incurable cancer.
BACKGROUND
In this single-site study, we evaluated the feasibility of a parent-clinician communication intervention designed to: identify parents' rationale for the phase I, do-not-resuscitate (DNR), or terminal care decision made on behalf of their child with incurable cancer; identify their definition of being a good parent to their ill child; and provide this information to the child's clinicians in time to be of use in the family's care.


METHODS
Sixty-two parents of 58 children and 126 clinicians participated. Within 72 hours after the treatment decision, parents responded to 6 open-ended interview questions and completed a 10-item questionnaire about the end-of-life communication with their child's clinicians. They completed the questionnaire again two to three weeks later and responded to three open-ended questions to assess the benefit:risk ratio of their study participation three months after the intervention. Clinicians received the interview data within hours of the parent interview and evaluated the usefulness of the information three weeks later.


RESULTS
All preestablished intervention feasibility criteria were met; 77.3% of families consented; and in 100% of interventions, information was successfully provided individually to 3 to 11 clinicians per child before the child died. No harm was reported by parents as a result of participating; satisfaction and other benefits were reported. Clinicians reported moderate to strong satisfaction with the intervention.


CONCLUSIONS
The communication intervention was feasible within hours of decision making, was acceptable and beneficial without harm to participating parents, and was acceptable and useful to clinicians in their care of families.
Children's National Medical Center, 111 Michigan Avenue N.W., Washington, DC 20010, USA. pshinds@childrensnational.org
Pamela S
PS
Hinds
Linda L
LL
Oakes
Judy
J
Hicks
Brent
B
Powell
Deo Kumar
DK
Srivastava
Justin N
JN
Baker
Sheri L
SL
Spunt
Nancy K
NK
West
Wayne L
WL
Furman
D000328:Adult; D001291:Attitude of Health Personnel; D017321:Clinical Trials, Phase I as Topic; D003142:Communication; D003657:Decision Making; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009369:Neoplasms; D010290:Parents / Q000523:psychology*; D011368:Professional-Family Relations; D016414:Resuscitation Orders; D013727:Terminal Care; D019452:Terminally Ill; D055815:Young Adult