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Chaplains natural fit in organ donation process
Balanced, objective role key to informed decisions
The list of people awaiting solid organ transplants grows, and more hospitals are turning to interdisciplinary teams of medical professionals, social workers, organ procurement experts, and family support personnel who are trained to work with families of potential organ donors to ensure that opportunities for donations are not missed. Research has shown that such efforts increase consents for organ donation.
As professionals trained to counsel families facing or coping with the death of a loved one, hospital chaplains often are considered a natural fit for these teams. But exactly what role they should play has not been determined.
At some facilities, chaplains serve as the designated requester, the person responsible for approaching the family about donation. In almost every situation, chaplains will be asked to help families make a decision and cope with the outcome in some way.
"In our protocol, only the most experienced chaplains serve as participants in the donation process," says Alexander Tartaglia, DMin, associate professor and chair of the department of pastoral care at Medical College of Virginia Hospitals and the School of Allied Health at Virginia Commonwealth University in Richmond. "While it is impossible to remain completely value neutral in these circumstances, our chaplains are trained to respect individual needs, beliefs, and values of families."
Virginia Commonwealth has developed a standardized protocol that governs the process of requesting organ donation and counseling the parties involved. Chaplains have designated roles in this process.
The primary obligation of a chaplain, in any critical or end-of-life situation, is to offer emotional and spiritual support for families, Tartaglia explains. Chaplains must be able to exercise openness, flexibility, and patience, showing respect for family and cultural variances, and helping the medical staff to do the same.
"In the event of a neurologically devastated patient who is a potential organ donor, there are some responsibilities that take on added importance," Tartaglia adds. "Facilitating communication is key. In our program, we work hard to assess family understanding of the process as well as their comprehension of the grave prognosis, testing, and the concept of brain death."
Chaplains can monitor family’s understanding
Although medical information is explained by the clinical staff, family members’ ability to comprehend and process the information is compromised. Listening to families talk among themselves or to the questions they ask in the absence of the other staff enables the chaplain to monitor the family’s understanding, he says.
"Chaplains role includes facilitating family discussions on value clarifications, end-of-life decision making, and organ donation," Tartaglia states. "And, unless the family initiates this, discussion about donation should be reserved until after the brain death declaration has occurred, and the organ procurement organization has completed the initial approach for donation."
Although the practice at many hospitals, chaplains should not be the designated requesters — the primary person responsible for asking a family member to consider organ donation, Tartaglia feels.
"The chaplain first meets and engages the families for the purpose of offering emotional and spiritual support," he says. "To shift roles and become a designated requester is morally problematic."
The change in focus can confuse and frighten families and chaplains have a responsibility to remain neutral and serve the family’s preferences.
"We would not want to risk influencing their decision based upon our care for them," Tartaglia says. "Second, we believe chaplains should not be placed in a conflict-of-interest situation whereby securing consent could become an agenda."
But different approaches may better serve different families, and saying that one particular person or another is never appropriate is problematic, argues the Rev. Kevin Massey, BCC, a hospital chaplain at Advocate Illinois Masonic Medical Center in Chicago.
"I don’t think there is any specific discipline that ought to have the main spot in doing it, whether it should always be the doctor or always the organ bank representative," Massey says. "I can think of times when the nature of the support I’ve given the family would make it appropriate that I make the initial approach, but it varies by case. I can also think of times that I wouldn’t have wanted to be the requester."
In Illinois, state law requires that a trained representative from the local organ procurement organization, the Gift of Hope, make the initial request, he notes. But barring such regulation, he recommends that teams canvass among themselves to determine which person is best to make the approach to that specific family.
"I would speak against there being any absolutes other than that person should feel comfortable and informed enough to do the initial requesting," he adds.
In the Virginia hospital protocol, the chaplain introduces the organ procurement organization coordinator to the family and remains during the initial request, but does not actually make the request, Tartaglia says.
"The role of the chaplain is to continue to function as a supportive presence and a witness to the consent process," he says.
Chaplains definitely should not tell families what choice to make, Tartaglia agrees. In times of crisis, many families will turn to clergy for advice on the right thing to do.
"In this situation, it is appropriate to assist the family in exploring the previously expressed wishes of the patient as well as their own beliefs and values to arrive and an answer that is congruent with who they are," he says.
The main role of the chaplain should be as a support for the family, to ensure that they are given the space to experience grief and to make an informed decision, agrees Massey.
"Whenever anyone is a candidate for organ donation, the death has almost always been unexpected, the sudden death of a loved one," he explains. "I see both a professional and a personal responsibility to advocate for the family to be given the space to make whatever decisions are appropriate to them."
Families frequently wonder whether their religious tradition approves of organ donation. Even though most major religions do support organ donation, Massey says he is careful not to speak as a religious authority.
"When someone asks the question, Do you know if my religion approves of organ donation?’ I will say what I know to be true, but I will also offer to put them in touch with an authority from their own religious tradition because I don’t want to speak for them," he says. "I also don’t want them to feel that their religion’s beliefs obligate them to donate. It remains a personal decision. If you choose to do that, then your religious community will support you, but if you also choose not to because of whatever reasons are important to you, they will support that decision as well."
Families often have problems understanding the clinical information presented to them and need help coming to terms with the reality of their loved one’s prognosis, adds Ken Faulkner, MA, MDiv, assistant professor of clinical ethics at School of Allied Health of Virginia Commonwealth University.
"One of the biggest challenges is helping families understand the concept of brain death," he says.
In most situations, only patients who have lost almost all brain function (all motor and reflex responses), but whose breathing, heartbeat and respiration continue, although mechanically maintained, are eligible to be organ donors.
Because patients on ventilators seem to continue to breathe and have a heartbeat, family members often have difficulty accepting that these patients will never recover or awaken.
"The chaplain pays particular attention to how families receive and comprehend information. They may need to facilitate further communication between the family and medical staff," he says.
Families also have concerns about funerals, for example, whether they will be able to have an open casket. And as in other end-of-life situations, the chaplain can help families find spiritual comfort through prayer and other rituals that assist them in saying good-bye.
"We have had a number of situations where families have initiated discussion of donation and felt strongly that they wanted to do that," he says. "Then, in some instances, when explored, it has been determined that the patient is not a suitable donor. Families then experience a second loss that needs to be addressed."
Above all, it is important that the chaplain enable the family to have enough space to make an informed decision. Often, this means having the initial discussion in a private place and allowing the family or family member time alone to consider the decision.
"Time is often an issue," says Massey. "But I will advocate inside the health care team for the family to have some time alone. We will say to them, We’ve given you some information but we’d like to get you some space and privacy to be together as a family and talk about this.’"
The family then approaches the health care team with additional questions or when they have made a decision.
The chaplains also are a resource for the staff as well as the family involved, says Tartaglia. In some cases, the chaplain may be more familiar with the donation process and the hospital’s protocol than the health care professionals involved in the patient’s care.
"One role of the chaplain can be to educate new staff in a collaborative manner," he says. "This is particularly true in a teaching hospital with turnover of medical staff." n