About 65,000 U.S. patients are waiting for transplants—kidneys, hearts, livers, and lungs—to save or improve their lives. More than 4,000 patients—or 12-13 each day—waiting last year died because of the critical shortage of transplantable organs.
But the shortage is not only of supply, it is a shortage of consent to donate. EDC and the New England Organ Bank have launched a $937,000, three-year project to develop and evaluate a program that will build public and hospital commitment to participating in organ donation and educate intensive care unit staff. Funded by the U.S. Department of Health and Human Services, the program is part of a $13 million nationwide effort to test promising new ways of increasing organ donation.
Each year, about 5,500 families consent to donation, but about 8,000-15,000 people are estimated to be potential donors. “Many hospitals are doing a very good job,” says Principal Investigator Mildred Z. Solomon, Director of the Center for Applied Ethics and Professional Practice at EDC. “This is a chance to do an excellent job.”
Organs are donated primarily by people who have died of brain injuries (e.g., car crashes, gunshot wounds) or other brain damage such as aneurysm or stroke. These patients are declared “brain dead” when they meet criteria that confirm irreversible cessation of brain and brainstem activity. At or near the time of death, hospital clinicians identify potential organ donors and make a referral to the organ bank. The hospital staff and organ bank staff then make arrangements to discuss the opportunity for donation with the family. About half of the families ultimately consent. Sensitivity to the family’s grief and concerns, especially when the death was unexpected, are cornerstones of a successful program, says Kevin O’Connor, co-investigator at the New England Organ Bank.
The premise of the project is that families who have experienced optimal care in the final phase of life are more likely to trust their health care providers and therefore are more likely to consent to organ donation. Solomon will draw on her center’s experience moving toward more family-centered care near the end of life, enhancing communication and trust, and helping clinicians move beyond death as a medical failure. “Some health care providers are so uncomfortable discussing issues related to death. They signal that, and it raises mistrust among families. We help providers feel less like failures when people die and help them to be able to sit with families’ grief and pain. It builds stronger bonds between providers and families.” And, as Solomon notes, “the family that doesn’t trust providers is never going to consent to organ donation.”
The four major initiatives of the project are to:
- Build hospital commitment to treat organ donation as a quality indicator (tracking, assessing, and reporting on practices).
- Improve communication with families, primarily through a family support team that will follow specific guidelines to ensure timely and positive communication (e.g., thoughtful listening, encouragement of family participation in decisions)
- Offer interdisciplinary educational seminars for intensive care unit staff
- Survey clinician knowledge, attitudes, and beliefs to motivate participation and serve as a baseline for later comparisons
The project will work with three New England hospitals. “There’s growing national attention to this problem,” says Solomon. “Federal regulations have focused on improving organ procurement policies and practices and this project will help hospitals meet those new regulations.” The project will compare consent and donation rates before and after the planned intervention goes into effect, survey clinicians’ knowledge and attitudes and assess family satisfaction with care received and with the request process. If the intervention proves effective, the project will develop a guide to facilitate nationwide distribution.
Solomon’s work over the past decade has focused on decisions and quality of care at the end of life. “I’ve had this issue at the back of my mind for a long time. There has been virtually no integration of insights from the expanding literature on end-of-life care and research on organ donation. It’s an important issue for the public,” she says. EDC’s expertise in health promotion and disease prevention, public education, and it’s skill in handling end-of-life care is perfectly suited to this project, she adds.
“This is an exciting and promising marriage of three distinct areas of expertise: decisions at the end of life, organ and tissue donation, and quality improvement in health care. This synergy will result in major progress,” says O’Connor.
Originally published on December 1, 1999