One of the greatest challenges for any physician or OPR is explaining death to a family. The definition of death with which most people are familiar is the permanent cessation of respiration and circulation. The concept of brain death is extremely challenging to explain not only to family members, but also to hospital personnel. In fact, it was not until 1968 that the major step was taken toward redefining death to include brain death.
The Harvard criteria, developed at the Harvard Medical School, allowed for certain criteria to deem a patient brain dead, brain death being consistent with death. The criteria focused on (1) unreceptivity and unresponsiveness, (2) lack of spontaneous movements or breathing, and (3) lack of reflexes.3 These criteria, although modified and revised due to advancements in medical practice, continue to serve as the medical criteria for diagnosing brain death.
When explaining brain death to a family, it is essential that the family clearly understand the finality of the diagnosis. Many times, this involves sharing the results of tests that have been performed in order to diagnose brain death (cerebral blood flow, EEG, MRI results). Families have explained that watching the final test performed or viewing the x-ray or EEG is helpful in understanding the finality of brain death. If a family feels the patient needs "more time to turn around", then more explanation and education are clearly required.
It is crucial that the family understands that their loved one is dead. The OPR's role is to explain to the family that although the patient is brain dead, the patient's organs are still being supported artificially, and that unless the organs have been damaged by injury or disease, they may be used by other individuals through organ transplantation.
The family must be reassured that removing the respiratory support equipment is not the same as causing the death of the patient. Once the patient is brain dead, the ventilator serves only to supply oxygen to the heart and other organs and tissues. Often it is helpful to inform the family that there are no clinically documented cases where a patient was declared brain dead and later restored to a normal life.
Research has shown that minorities, African-Americans, Hispanics, Asians, and Native Americans, typically receive less education and information regarding organ donation and tend not to discuss the subject with significant others.2 Minorities are also more likely to distrust the medical community and fear premature death, both affecting the donation decision.
In the Hispanic community, potential language barriers and the extended family are important considerations. In this community, the whole family is involved in the decision to donate.11 "Collective hysteria", a grieving process marked by shouting, crying, fainting and sometimes convulsions has been noted by researchers studying the Hispanic population.
In the Asian population, the cultural belief is that the body should go to the grave intact; this will allow the body to reunite with the spirit. In the Filipino culture, cremation has not gained acceptance because of the destruction of the corpse. Organ donation is perceived also to destroy the corpse.20
These cultural beliefs should be respected and, in some instances, organ donation should not be pursued. The issues of distrust and fear do have possible solutions. However, a trusting relationship between the healthcare team and the potential donor family cannot be built without a strong foundation. Education programs focused on improving caregivers' understanding of organ donation and the specific considerations around the consent process are essential in building that foundation.
Each issue that may cause minority families to decline donation should be addressed individually. Minority healthcare workers and community professionals should be utilized to implement educational programs.
Since religious beliefs are frequently verbalized by minority families when considering organ and tissue donation, the support of religious leaders can be extremely helpful. Information on organ donation and how it relates to a particular religious belief will often be well received when coming from a religious or spiritual leader.
Regardless of race or ethnicity, a family discussion on donation is the optimal method for determining individual beliefs and preferences. Donor cards may assist in initiating such a family discussion.
Providing information on organ donation through the school systems is paramount. Students should be taught about the natural cycles of life that eventually will lead to death. When students learn about the option of organ donation at a young age, they can discuss this option with their family.
Hospital-Based Professionals and Organ Donation The effectiveness of medical personnel in identifying potential organ donors and notifying the OPO of these donors is crucial to the success of organ donation. Historically, the responsibility for approaching the family about organ donation has fallen to the ICU nurse, attending physician, or chaplain.
Hospital-based professionals from all disciplines may hesitate or feel uncomfortable speaking to potential donor families because of reluctance to add to the next of kin's grief or because they feel they are not prepared for the many questions that donor families may have.14 For these reasons, it is strongly advised that hospital personnel team up with OPO personnel to approach families regarding donation.
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