As very simply stated in the Bill of rights for donor families, Donor Families have the right to make organ and/or tissue donation decisions for themselves and on behalf of their loved one who has died. This opportunity should be part of the normal continuum of care provided to families after the death of a loved one has been determined and they have had sufficient time to acknowledge that death. In addition to the rights of families, federal law requires that all families of brain dead patients be offered the option of organ and tissue donation under the Federal Uniform Anatomical Gift Act of 1968. As early as 1985, in response to public pressure, Required Request legislation began passing in states across the country. Their purpose was to assure that all families were presented the option to donate. Hospitals were required by the federal government to present the option of organ donation in order to receive Medicare and Medicaid reimbursement. Shortly thereafter, the Joint Commission for the Accreditation of Healthcare Organizations (JCAHO) instituted similar requirements for hospitals. Although several years have passed since the implementation of these laws, the anticipated increase in donors has not been realized. Part of the problem may have been that physicians and nurses were initially responsible for making the family approach, when they did not feel comfortable doing so. A lack of education in the general public has also played a role. Anecdotal reports have clearly shown that if families have discussed organ donation ahead of time, then when faced with the sudden loss of a loved one, the donation decision is an easier one to make. While "family initiated" discussions are reportedly on the rise, in most instances, if the offer is not made to the families, then consent will not be obtained. It is imperative to the success of any donor program that the hospital and OPO work as a team. Together they can more effectively fulfill the rights and meet the needs of families suffering loss, as well as potentially increase the number of organs available for transplant.17
There is ongoing debate regarding the ideal requestor who can affect a positive response to the organ/tissue donation option. Several studies have shown that when a specialized oPo requestor presents the option and separates it from the discussion of death, the rate of donation significantly increases. One of the major factors that influences outcome is time spent with the potential donor family. The role of the organ recovery coordinator (ORC) has historically included the consent discussion. However, the ever-expanding role of the ORC has meant less time available to devote to the care of the family. When a dedicated requestor is involved, more time is spent with the family and a relationship develops. This affords ample opportunity to explain brain death, ask and answer questions and, in general, results in a more effective consent process. Consent has risen in every case where this has occurred.6,15
Despite concerted efforts by OPOs, there is still a lack of knowledge about organ donation and transplantation among medical professionals. Physicians and nurses traditionally have little or no training in obtaining consent for organ/tissue donation. Even though there is a general consensus among healthcare professionals that organ donation and the family consent process are important, very little time, if any, is spent learning how to most effectively be involved.
Many healthcare professionals continue to be hesitant about approaching families or mentioning the subject of donation for a variety of reasons. Often cited reasons include an unwillingness to "intrude" on a family's grief, lack of knowledge of specific procedures, lack of time, concerns regarding legal issues, and questions regarding donor suitability. It also can be very difficult for physicians and nurses to deal with the death of a patient whose life they have worked diligently to preserve.17,19
Some OPOs have compiled data that support the use of "same race" requesters. Theoretically the practice of using a requestor who is the same race as the next of kin helps build rapport with the family. However, emerging data indicate the most important factor affecting a family's donation decision is how well their needs have been met throughout their hospital experience. Consequently, hospital and OPO personnel must assist families in grief, help them get the answers to their questions regarding brain death, assure them that everything possible was done for their loved one, help them to make arrangements and, above all else, listen. Early findings from a study conducted by Southwest Transplant Alliance suggest that when adequate time, care and concern were not provided to families from the outset of their hospital experience, not only were they less inclined to donate, but they also were more inclined to voice dissatisfaction, frustration, and anger toward the hospital, physicians, and nurses involved.
While these findings are not unexpected, it is confounding that despite strong logic dictating that better cared-for patients and families will be more favorably disposed toward a hospital and its practitioners in the event of a negative outcome, more and more hospitals are cutting back on the positions that traditionally have provided that care, i.e., clergy, social workers, etc.
One factor vital in the consent process is well within the control of the caregiver in consulting with and including OPO personnel in the approach of a potential donor family. The combined involvement of OPO personnel and the primary caregiver creates an effective team approach in offering the option of donation to the family.6,15
Communication is key in providing the most accurate and sensitive information regarding donation to the family. Those experiencing grief report that the senses are dulled. The most effective way to speak to families experiencing grief is to give good news and bad news, avoid medical/technical jargon, and speak softly and slowly. People in grief need time to process information. It is critical to be clear, consistent, to the point, and to repeat information as frequently as needed.
When talking to families in grief, nonverbal communication is as important as what is being said. It is important to be relaxed, to avoid quick, jerky movements, and to maintain eye contact that is respectful of the situation. This usually means that the eyes are lowered and eye contact is less direct than normal.18
When determining the appropriate time to discuss organ donation with a family, it is important to know the status of brain death pronouncement, whether the patient has been declared dead or the brain death determination is in progress. Before approaching a family about organ donation, it is imperative to know whether the physician has talked with them about the death or expected outcome. If not, it is important to know when that conversation will take place. Time must be spent obtaining important information about the next of kin and any other family members present. For example, is the next of kin the decision-maker or is another family member in that role? How are they coping with the loss? What is their level of understanding about brain death? Who is present to provide support?
As previously discussed, the time needed to process the events that have resulted in their loved one's death is different for every family depending on religious, cultural and personal beliefs, individual personalities and ways of handling grief. The best time to present the donation option will be different for every family.
No matter where in the process, if the family has questions regarding organ/ tissue donation, the procurement agency(s) should be contacted.
Supporting data indicates that when the family has been told that their loved one is dead and been given sufficient time to question and understand this, then consent is more likely to occur. This is known as a decoupled request.
Time is a crucial component in the consent process. Its importance cannot be overstated. Families need time to deal with their loss, time to spend with their loved one, and time to make an informed decision.18
Hospitals are usually busy, crowded institutions. However, it is important to allow the family time alone, away from others and all the activities that normally occur in a critical care waiting room. The request for organ donation is best done in a private room where there is a place to sit with a table. Some hospitals have private rooms where family members may have been waiting since the results of the brain death examination. These can be used; however, it is crucial to ascertain from the next of kin who should be present for the discussion. They may or may not want to have extended family involved in the decision. If there is no ideal place, locations that would suffice include a small area of the cafeteria, in a stairwell or perhaps outside the hospital. Chapels are comforting to some families but can be viewed as a coercive situation if the family is not comfortable in this environment. The general waiting room and the bedside should never be used.18
The conversation or the approach must include the next of kin but may also include grown children, powerful support people and relatives. The smaller the number of people involved, the more effective the approach. However, it is important to take the cue from the family regarding whom to include in the discussion. The conversation should include several steps: establishing a climate, introducing the subject of donation, providing information, asking questions regarding concerns, addressing any fears, responding to the decision and closing the conversation.
It is critical that the family's understanding of the specifics are frequently checked, and that sympathy and support are offered.18
Every family facing a decision about donation should be given as much information as possible in order to insure they make the best decision for them, both immediately and on a long-term basis. The role of the requestor is to ensure that families make informed decisions, based on fact, not rumor or tabloid headlines.
The family should be provided with a description of all transplantable organs and tissues along with an overview of the benefits of transplantation and the number of waiting candidates. They should be assured that the donor will be treated with the utmost respect throughout the donation process. The family may have questions regarding the effect donation will have on funeral arrangements. While the donation process can frequently delay funeral arrangements up to 24 hours, the type of funeral the family desires (e.g., open casket viewing) is usually not affected. There are no additional costs to the family for the donation. All costs related to the recovery of organs and tissues are paid by the procuring agency. The family considering donation also should be informed that even though they may choose to donate, there are many variables that determine whether organs or tissues are ultimately transplanted (i.e., organ function, medical/social history, current hemodynamic condition).18
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