Objective:
The NHF Ethics Working Group’s (EWG) mission is to promote integrity and ethical behavior in the bleedings community. The EWG wants to determine if our Hemophilia Treatment Centers (HTCs) want or need a regional ethics committee to help work through ethical dilemmas.
Method:
A 16 question needs assessment survey was written and distributed to all 12 regional HTC’s healthcare providers within NHF’s database. The data was collected from January 25, 2018 thru March 6, 2018 and analyzed via Monkey Survey.
Summary of Results:
The survey was distributed to 1322 HTC staff members, 192 responded to the survey, with a response rate of 14.4%. All 12 HTC regions had participants.
A variety of professionals participated in the survey: nurses (26%), social workers (23%), physicians (16%), physical therapist (12%) advanced practice providers (9%) & non-clinical staff (3%).
Ethical dilemmas were difficult to resolve according to 61% of participants while 9% thought they were easy to resolve. Ethical dilemmas were also described by 32% as confusing, 45% as frustrating and 60% as interesting.
The frequency of ethical dilemmas varied; 43% monthly, 25% yearly, 23% weekly and 5% daily.
When resolving an ethical dilemma 22% resolved them on their own. Others liked to collaborate with colleagues (96%), consult with their institution’s ethics committee (36%), consult the NHF EWG (4%) and 2% avoided them. When dealing with an ethical dilemma, most people were sometimes comfortable (42%), usually comfortable (41%,), always comfortable (9%) and never comfortable (6 %).
When our respondents consulted their colleagues, 13% responded that their concerns were always adequately addressed, 53% usually, 28% sometimes, 2% never and 3% n/a.
Over 50% of our respondents have never consulted their institution’s ethics committee.
When asked if a confidential regional ethics committee would be a valuable HTC resource only 8% responded no.
If there was a regional ethics committee, 27% said they would like to be involved and 40% responded maybe.
Only 45% of our participants knew of NHF Ethics Working Group and 70% were interested in a case based ethical presentation by the NHF Ethics Working Group.
Conclusion:
Ethical dilemmas occur frequently are are difficult to resolve. Most people did not consult their institution’s ethics committees and the majority of participants didn’t know that NHF had an ethics working group. There is interested in ethical educational presentations/discussions with the EWG. Participants thought that a regional ethics committee would be a valuable HTC resource and greater than a quarter of the participants showed interested in being involved with the regional ethics committee.