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Overcoming Families' Fears and Concerns in the Donation Discussion
Margaret Verble, EdD, Judy Worth, MA; Verble, Worth & Verble, Lexington, Ky
[Progress in Transplantation 10(3):155-160, 2000. © 2000 NATCO]

Research into the fears and concerns families have about donation and other issues at the time of the donation discussion substantiates that many fears and concerns act as impediments to consent. Twenty fears and concerns voiced by families at the time of the donation discussion have been identified. Specific strategies have been developed to deal with 19 of those concerns. Using gentle probing questions and targeted strategies, trained requestors may successfully address many fears and concerns, thus increasing the likelihood of the family consenting to donation.

Research into the fears and concerns families have about donation and other issues at the time of donation spans a quarter of a century.[1,2] This research has substantiated that certain kinds of fears and concerns act as impediments to consent. At least 2 of those, the fear of the organs being removed before death and the fear of mutilation, have been documented repeatedly.[3-5]

Our latest published research distinguished the fears and concerns most commonly heard by procurement professionals during the donation discussion from those less frequently heard.[2] Our research also distinguished fears and concerns considered hard to deal with from others professionals consider less difficult. That research divided 20 fears and concerns into four categories: rarely heard, easy to deal with; rarely heard, hard to deal with; often heard, easy to deal with; and often heard, hard to deal with.

We believe that most fears and concerns can be removed as impediments to donation if procurement professionals are trained to make particular responses to fears in particular ways. Indeed, a collective body of wisdom has grown up within the procurement profession about the best way to deal with the fears and concerns families have. That collected wisdom has been disseminated in workshop format for 2 decades. The information has not, however, been available in published form. The purpose of this paper is to remedy that deficit.

No matter what concerns families express, the same basic conversational strategy should be used by procurement professionals. When the concern is voiced, the initial response should be in a question form. The question can be an extending probe, eg, "Could you tell me a little more about that?" Or it can be a simple reflecting probe, eg, "So you're concerned about the funeral?" It also may be phrased as a clarifying probe, such as, "Are you concerned about delaying the funeral or about having an open casket?" All 3 types of questions call for the same type of response from the family, an elaboration on the initial statement, which gives the interviewer a clearer idea of what the family member's concern really is.

Responding to a concern or fear with a question, rather than with immediate reassurance, is counter-intuitive and, in our experience, is often hard to learn. Most entry-level people in the field want to respond immediately to families with comforting answers or information. Those approaches are not effective for several reasons. Donor families are always highly stressed, and people who are stressed rarely say what they really mean in initial remarks. Thus, responding to an initial remark without first probing for more information leads the interviewer into a response that often doesn't give family members an answer to their real concern. As a result, the quick, reassuring response wastes time unless it is a lucky direct hit on the true concern. Additionally, the quick, reassuring response often seems like salesmanship to families, making them feel like they haven't been listened to. Finally, families who are highly stressed typically have difficulty processing and retaining the information they are being given. Gently probing the family's concern before giving information can help family members maintain focus so that they can hear the interviewer's response to their concern.

The interviewer's probing questions should be softened so they do not seem intrusive. Several softening techniques exist. One is to use the family member's name as a preface to the question: "Mr Kane, are you saying you think donating would delay your daughter's funeral?" Another softening technique is to repeat the family member's own words in the text of the question: "Mr Kane, when you say you 'Don't know about the funeral,' are you saying you are worried donation would delay the funeral?"

Other softening techniques are pausing, empathizing, affirming feelings, and universalizing. A thoughtful pause preceding a question conveys an attitude of considerate listening. Empathy does the same but, additionally, removes anything for the family member to push against, thus lessening resistance. Affirming feelings and universalizing increase rapport and allow families to feel that the interviewer thinks their concerns are worthwhile.

Interviewer: Mr Kane, when you say you 'Don't know about the funeral,' are you saying you are worried that donation would delay the funeral?

Interviewer: You're saying, Mr Kane, that you want to have an open casket funeral and are worried that donation would prevent that?

Kane: I know it wouldn't prevent it. I just don't want her to look all cut up.

Interviewer: Oh, Mr Kane. I think I understand now. A lot of people worry about that. I know you want your daughter to look like herself.

Interviewer: I know, Mr Kane. I'm so sorry. [pause] Let me assure you that Janie's body will look the same at the funeral whether you donate or not. The operation site would be covered by her clothing.

Note that, in this example, information pertaining to the concern is ultimately provided, but only after the concern is clarified by questions and only after the interviewer empathizes, affirms feeling, and universalizes. Also note that the father's initial expression of his concern did not accurately communicate his true concern.

Our earlier research identified 20 fears and concerns expressed by families in donation discussions. That research found that 19 of those concerns may, indeed, need to be addressed in donation discussions and that those concerns and fears can be divided into the four categories previously listed.[2] Below, we provide the information to deal with these concerns as they are typically expressed in the donation discussion, and in some cases an analysis of the concern necessary to distinguish it from others is also provided.

When this fear is expressed, the family may not understand that the person is really dead, an issue which must be addressed. When the family does understand that the person is really dead, the fear of "hurting" the deceased is most often linked with bone donation. In all cases, families should be told that the lack of sensitivity to pain is one way medical personnel determine death.

Sometimes, questioning around this concern reveals that the family member clearly understands that the donor is dead, but the family member is so closely identified with the donor that the family member is not separating what the operation would feel like to him- or herself as an alive person from what the operation would feel like to a dead person. Generally, emphasis on the fact the donor is dead and can't feel will allay this concern.

The loved one will be killed or given inferior treatment if donation is consented to.

Emphasize that the donor's physician is not involved in any way in the donation and is forbidden by law to benefit from it. Other medical professionals perform the operations. Removal of organs does not take place until after death is declared by the donor's physician.

The family should be told directly, when initially given information, that the body will be treated with respect.[6] Based on anecdotal information, we believe that fear of disrespect is primarily a concern of black families, among which it is very common. However, this fear may not necessarily be voiced to white interviewers. Therefore, this information should be provided early to black families.

If family members still voice reservations, tell them that the health professionals who perform the operations are highly trained, recognize the generosity of donor families, and also want the organs and tissues to be in excellent condition. Therefore, they are very careful during the operations. Sometimes, particularly if a health professional is part of the family, family members will have specific concerns about disrespect, eg, inappropriate humor during the procedures. Procurement professionals should address those concerns by assuring the family that the professional will personally see to whatever the concern is.

The American public is overwhelmingly in favor of donation. Most people think donation is a good and generous thing. All major Christian religions support it. It is the family's choice to allow other people to know or not.

"How do I know this will really do someone some good? I don't want to do it and then have his organs thrown away."

All gifts that are medically suitable are transplanted as a first priority. Often, organs that are medically unsuitable are recognized as such during procurement, and they are left in the body. Human tissue that is not transplanted or used in research is cremated. If the family is interested in research as a back-up alternative, many people may be helped, instead of just 1 or 2. Emphasize that the conversation would not be taking place if the probability for transplantation were not high. Also emphasize that families can donate for transplant only.

"My father doesn't approve of giving organs. If he finds out, he'll have a fit."

The best way to deal with this is through extensive questioning about what the person's objection is and how likely the person is to find out about the donation. Do not promise to keep a secret that cannot be kept, but do promise to try to protect the information. Also, suggest ways to keep the person from finding out. These may include keeping him or her away from the hospital or relaying the family's concern to the funeral director.

The finances of transplant are extremely complicated. When asked about money issues, be sure to narrow the concern down to something very specific before answering. It is against the law to sell organs in this country, but health care professionals will be paid for their work. All agencies charge processing fees and, for the most part, those fees reflect procurement and transplant costs.

Questions about what makes family members think they might change their minds often reveal an entirely different concern. However, many people have not thought about the possibility for organ donation happening to them. Tell family members they can change their minds at any time up until the actual removal takes place. If they do change their minds they should notify the interviewer or the interviewer's replacement. Nevertheless, remember that the goal is to take donations people will not later regret having made.

The particular body part is too closely associated with the soul or personhood of the deceased.

This fear is most often heard in heart donation discussions but is also sometimes mentioned in eye donation situations. Emphasize the mechanical nature of the heart as a pump and muscle or move to another organ or tissue. If eyes are being discussed, move immediately to another, less symbolic tissue.

This mystical belief is most often expressed about eye and heart donation. The family may be told that most major religions in the United States endorse donation. If, through questioning, it is determined that the family thinks the loved one is already in heaven, reinforce the idea that he or she has arrived there while the body is still here. Another strategy is to question family members regarding their beliefs about what happens after death to people who have lost body parts through accident or surgery. Families who believe that God perfects damaged bodies in heaven may conclude that such powers also extend to the bodies of people who donate organs and tissue.

Information Begin by asking questions, eg, "Could you tell me what you've heard about that?" Often, family members will refer to a particular case, such as Mickey Mantle's. Tell them that once people get on the transplant list they are ranked by waiting time and how sick they are. The ones who have been waiting the longest are at the top of the list, but if someone suddenly gets sicker and is in immediate danger of dying, he or she is moved to the top.

If the family's concern is that people need money to get on the list in the first place, tell them that getting a transplant is like all other operations in that respect. Someone must pay for the operation, although a few states have state funds to pay for transplants for low income people. It is also helpful to mention that many of the people who are on transplant lists have not been able to work because of their illnesses and thus are often in poor financial shape.

This fear should be distinguished, through questioning, from the aforementioned fear of the donor being hurt and the much more difficult to deal with fear of the body not being whole. These 3 fears often initially present the same way, but the easy to deal with mutilation fear is basically a cosmetic concern, common especially in heart, eye, skin, and bone donation. Families should be assured that the bodies of their loved ones will be treated with respect no matter what they donate. Tactful descriptions of the procedures help allay this fear:

This fear can be dealt with cosmetically by using the approaches above and offering a little reassurance. It may also be helpful to remind the family that people look different after death, regardless of whether donation occurs.

With eye and tissue donation, most bodies arrive at the funeral home by the next morning at the latest. With organ donation, once consent is obtained, the entire process may take from 6 to 18 hours, a timeframe that will still meet most families' needs for scheduling funerals unless some specific necessity exists to get the body buried more quickly. It is often helpful to emphasize that the duration of the actual procurements is much shorter than the length of the entire process. For example, eye removal takes only about 30 minutes, organ removal an hour to several hours, and tissue removal 6 to 8 hours, usually in the middle of the night.

Many families have this concern and may not overtly express it. Therefore, it should be directly addressed with all families as part of routine information giving. All costs associated with donation are covered by the procurement agencies. However, donor families are responsible for their hospital bills unrelated to donation and for funeral expenses. After the consent is obtained and the paperwork is being filled out, tell families that sometimes hospitals make billing mistakes, and should that happen, they can simply notify the agency.

This fear arises from mystical thinking and is very difficult to dispel. People have an inborn desire for wholeness and a fear of dismemberment, and in times of crises, many people cannot be pulled away from these desires and fears. However, gentle questioning around the subject of other operations (hysterectomies, etc) may help.

The concern may be identified and families may be desensitized to it before they get into the donation discussion. Nursing staff should be trained to identify family members who have a particularly hard time witnessing procedures and should slowly desensitize families to those procedures. The family members in question may also feel particularly powerless and should be empowered by decision-making opportunities.[7]

Sometimes "I don't want her cut on anymore" is a fear regarding bodily integrity; however, it can also be an expression of fear of cosmetic mutilation, or a fear that the loved one can feel pain. These are discussed above. On occasion, the real issue behind this common statement is that the family member was unable to protect the loved one from either the cause of death or from invasive procedures in the hospital. In such cases, which often involve a man who has been unable to protect either his child or his wife, a great deal of empathy and an acknowledgment that the interviewer knows the man would have done anything in his power to protect his loved one, had he been able to, can overcome this objection.

Donating will go against the potential donor's wishes not to donate as expressed in a discussion or conversation.

This objection is extremely hard to overcome. Many procurement professionals consider it legitimate and immediately quit the conversation when it is expressed. That is a mistake. Many times the prospective donor said he or she didn't want to donate in a joking way, and that is all the family has to go on. Almost always, the prospective donor made the decision without the benefit of talking with a health professional who could provide accurate information.

This objection generally arises on 2 different occasions. First, it is a way of saying indirectly, "I don't want to donate." Thus, it actually masks some other concern. When it is initially raised, tell the family members that either way, they'll be making a decision for someone else; then continue to ask questions and provide information until the real concern is uncovered.

This objection is harder to deal with when it is raised in response to probing questions around the belief that the potential donor, when alive, said she didn't want to donate. In this case, family members raise the objection when they have realized that the prospective donor made the decision not to donate on the basis of bad information or in a joking way. But they still feel that they shouldn't go against an expressed wish. If this is the case, the objection is almost impossible to overcome.

The voicing of this concern indicates that the family doesn't understand brain death. Ask probing questions to find out exactly what family members have seen or heard that makes them think their loved one is still alive. Specifically refute their response by using an extended metaphor describing brain death to reframe their information, by drawing pictures, or by explaining or showing family members the tests for death. If family members do not respond to seeing the test results, find out what they would need to see or hear to be convinced of their loved one's death, and try to meet that need, ie, assist them in obtaining a second opinion or advise them that a second opinion has already been obtained by state law or hospital policy.

With the exception of the issue of potential donors themselves expressing a specific wish not to donate, the fears and concerns expressed by families in donation discussions have remained constant since the advent of donation for transplantation. Thus these concerns are predictable, can be planned for, and, often, can be effectively addressed. The skills and information needed to overcome most concerns can be mastered with training and practice.

1.Simmons RG, Bruce J, Bienvenue R, Fulton J. Who signs an organ donor-card: traditionalism versus transplantation. J Chron Dis. 1974;27:491-502.

2.Verble M, Worth J. Fears and concerns expressed by families in the donation discussion. Prog Transplant. 2000;10:48-55.

3.Task Force on Organ Transplantation. Organ Transplantation: Issues and Recommendations. Washington, DC: US Department of Health and Human Services, Office of Transplantation; April 1986.

4.Watts M. How people feel about organ donation. Los Angeles, Calif: Lieberman Research, Inc; 1991. Cited by: Caplan A, Simminoff L, Arnold R, Virnig B. Increasing organ and tissue donation: what are the obstacles, what are our options? In: The Surgeon General's Workshop on Increasing Organ Donation: Background Papers. Washington, DC: US Department of Health and Human Services, Public Health Service; July 8-10, 1991:199-232.

5.Verble M, Worth J. Biases among hospital personnel concerning donation of specific organs and tissues: implications for the donation discussion and education. J Transplant Coordination. 1997;7:72-77.

6.Verble M, Worth J. Adequate consent: its content in the donation discussion. J Transplant Coordination. 1998;2:99-104. 7.Verble M, Worth J. Dealing with the fear of mutilation in the donation discussion. J Transplant Coordination. 1999;1:54-63.