Increasing Organ Donation by Enhancing End-of-Life
Care:
A Family-Centered, Quality Improvement Progam
Empirical research has established that families are
more likely to consent to organ donation if they are satisfied with the
care their loved one received at the end of life. Yet there has been
virtually no integration of insights from the expanding literature on
end-of-life care with the research on organ donation. Education Development
Center, Inc. and the New England Organ Bank are implementing a collaborative
study to develop and evaluate an institutional intervention to increase
organ donation which will integrate findings from three distinct areas:
(1) organ donation research, which has identified best practices for
improving the request process in hospitals; (2) research that has identified
barriers to, and ways to improve, end-of-life care in hospitals, and
(3) quality improvement literature which points to the importance of
a work group collecting and analyzing-data about its own performance
and making continuous adjustments based on these data.
The study premise is that an intervention based on
insights from both organ donation research and end-of-life research will
increase health care professionals' comfort and skill discussing death
and dying and also build on institution's capacity to support families
through the end-if-life period. We further predict that these gains will
in turn increase consent rates and therefore donation. The intervention
includes an institutional commitment to treating donation as a quality
indicator and introduces a hospital-based Family Support Team to sustain
effective communication with families.
This study builds on the HCFA organ donation regulations.
By requiring timely referrals and expert requesters, the regulations
introduce two elements critical to an effective consent process. Our
study operationalizes the meaning of "timely" referral by creating
a specific clinical trigger and codifies a clinical pathway that defines
when the expert requester should be brought in and ensures the most positive
communication with families prior to the consent discussion.
We will test the intervention in three tertiary care
centers with documented potential for improving donation rates. Similar
hospitals will serve as control sites. Primary outcome measures are pre/post
consent and donation rates. Secondary measures include pre/post changes
in clinicians' knowledge and attitudes and family satisfaction with care
received and with the request process itself. If the intervention proves
effective, we will develop an implementation guide in the third year
to enable nationwide replication.
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