ELSEVIER
Family and Personal Consent to Donation C. Santiago
CHARACTERISTICS
OF THE
INTERVIEWER
U
NTIL NOW we have seen several aspects of the interview, before starting with our own, it is necessary to put the interviewer into context and examine elements related to a donorship interview. Formation
and Information
The more information we have, the better. The information obtained from the family and the potential donor (although it is better that the interviewer does not show up until the first isoelectric EEG is made) can be obtained from the following sources: ?? Auxiliary medical staff who provide relatives, ICU, etc, with information. The doctor who informs the relatives, ICU, etc. ?? The doctor, nurses and other auxiliary medical staff of the unit. The doctor who inform the donor’s family is a man in a key position to induce a donation; we have to be in close connection with him without the family acknowledgment. The documents (if they can be found) may be obtained from the original emergency unit, although it is not very frequent. Some psychological knowledge can be specifically useful, for instance, how to handle with people in a critical situation, with fear to death communication, social abilities, assertion, etc. Behavioral sciences should be considered by the interviewer as the art of understanding that family or person; he must be aware of the individual differences as to attitudes and qualities. Behavioral patterns allowing to state opinions on potential donors should be developped by the interviewer. The interviewer has to take in the potential donors individually, as a unit, to predict a future behavior. SKILLS
AND
ABILITIES
Social, communicative; sions.
also on analyses and making deci-
what to say in different social situations requires flexibility, spontaneity, and sensitivity. Communicative These are vital aptitudes. For instance, it is more important for the interviewer to achieve an emotionally supportive atmosphere rather than the environment. Knowing how to express without words the same that you say is of vital importance to establish a good rapport (watch out for introverted, distant and accusing attitudes). Face to face communication produces nonverbal messages that are easily grasped and understood by the interviewer. The interviewer when speaking has to make an impression of kindness and carefulness; when listening, he has to make use of facial expressions showing receptiveness, like nodding his head. A gloomy and serious face produces anxiety and it is a discouragement to spontaneous remarks. The interviewer must show a calm appearance, suitable for the conversation. The most important nonverbal attitude is the use of your eyes; your eyes may convey approval and understanding of, on the other side, anxiety and insecurity in your request. During the interview, the feelings and attitudes of the interviewer may have an influence on the potential donor and on himself. Do not ask questions in a shy or dubious way. The questions should be clear and simple. Changing attitudes and proper gestures with your hands will be of use for a fluent conversation. Physical contact is usually part of the interview too: it could help the attitude. You should ask general questions, which allows a better expression of feelings, avoiding direct questions or at least, reducing them to the utmost, because they provoke anxiety. Comments produce a break, and sometimes, they give way to spontaneous and important responses. The interviewer, by asking only questions, interferes with his duty; so it seems to be an examination in which expressions of feelings or spontaneous comments are not allowed.
Social
He must have social skills, being able to make friends. There are many people endowed with a good proportion of tactfulness, balance, and self confidence, which increases his aptitudes for social relations. Knowing what to do or 0 1997 by Elsevier Science Inc. 655 Avenue of the Americas,
New York, NY 10010
From the Hospital General Universitario de Alicante y Centro de Especialidades Babel, Alicante, Spain. Address reprint requests to C. Santiago, Hospital General Univeritario de Alicanto y Centro de Especialidades Babel, Maestro Alsonso, 109, 03010 Alacante, Spain.
0041-1345/97/$17.00 PII SO041 -1345(96)00648-3
1625
Transplantation
Proceedings,
29, 1625-l 628 (1997)
SANTIAGO
1626 Analysis and Making Decisions
A systemic and logic treatment must be applied to the information to be sense. You have to formulate and test hypotheses before and after the interview. The interviewer should familiarize himself with all the resorts and qualification required to the prompt solution of any kind of obstacle to reach the aim. If you are lacking time, it may prevent you sometimes from having all the information to carry out an analysis and interpretation properly. The interviewer must be on the alert against the pressure and demands that he will find when carrying out his duty. He has to keep calm in the presence of controversial demands and be able to solve them promptly. MATERIALS
A private place, with windows and telephone Water and glasses ?? Handkerchiefs . A room for the family during the donation process, if they remain in the hospital ?? ??
INTERVIEWER’S MOST FREQUENT ERRORS
Not enough reinforcement Make use of randomized reinforcements ?? Unspecific and unconcrete information 0 Sparse use of open questions ?? Too much control and directions ?? Requestions of many questions at the same time . Not paying attention to the interviewer’s nonverbal communication ?? Many interruptions ?? Getting angry
death. Statistics show that only 2% or 3% of adult people have a donorship card, according to the most favorable data. We can realize once more that people are reluctant to plan their death, even when donorship cards may be helpful to make decision on carrying out the donation for the relatives. However, donor cards do not prevent a difficult time for the family who have to consent to the donation. Although donor cards are legal, the majority of hospitals also obtain the nearest relatives’ consent. Taking legal advantage of donor cards over the relatives objections would not be of any use to the family’s sorrow. Elements Affecting Decision
For the interviewees: ?? The treatment they receive during the process ?? Social and cultural prejudices ?? Acceptance of help For the interviewers: 0 Anxiety ?? Lack of experience in dealing with families who have lost one of their members ?? Lack of knowledge about the donorship procedures
??
??
REQUESTING DONATION: HELPING FACTORS
How can I request? How I talk to the relatives about donorship when one of the members of the family has recently died? And When? To do it immediately does not seem correct. However, it is when, usually the donation is required. Formation in practice may fill in these gaps in the information. On the other hand, it is more difficult to make ourselves feel comfortable about a request for organs. First you should be aware of feelings about incapacity. Let us consider some of the myths, apprehensions and mistaken concepts related to the donation process that can help us in our duty. One of the most frequent topics is that requesting from the family to allow a donation as soon as possible means a lack of sensitivity to their sorrow. What is more, it is an offensive attitude because the majority of people do not want to donate organs. This is simply not true. The idea of donation has accepted well. Only 14% do not agree. If that is true, why then are there not more donors? Well, the approval of the idea seems to be less solid when the fact turns up. People do not disagree with the fact of donation; what they do not like is to think about their own
Who Has to Request Donation?
The donation request should be conducted mainly by the coordinated medical team of transplantation, together with the doctor of the unit where the patient was assigned and any person who could guide the relatives to solve their problems or doubts, for instance: 0 Priest ?? Neurophisiologists ?? Forensic surgeons and judges ?? Social workers ?? Psychologists We can also consider that, any person who guarantees our request may be the determining factor for the family in choosing between the two options. What We Should Know
How to convey bad news clearly, honestly, and in a suitable way for the interviewee’s capacity of assimilation. Grief should be confronted by making easy the expression of feelings. We may be of help taking into consideration personnal, social and spiritual needs of the interviewee, giving way, in the first place, to those needs. Do not let them be overwhelmed. Request donation keeping in mind that it is an option given to the family and you must respect their right to reject it. Requesting Steps
As we have said before, we will get as much information as possible (social, human) about the donor and the relatives in charge of donation agreement.
FAMILY AND PERSONAL
CONSENT TO DONATION
Prepare the interview. At this point, the coordinator has to be in contact with the greatest number of medical staff who have dealt with the family, there are different interpretations. Let us prepare a space (an office shape is not required) that guarantees some intimacy and the materials we need. The best moment to prepare the interview is when the assigned doctor informs the family about the irreversible situation. This period of time allows us to: ?? Consider the relatives attitude: calm, hysterical, furious, etc. ?? Try to find a more inclined member or friend of the family to the donation. ?? Check the kind of help they need. ?? Consider whether the relatives have understood that one their members is dead. First approach. During this information and having taken the previous considerations, there are two methods of introduction: 1. Be introduced by the doctor in charge of informing. 2. Enter the conversation at the relatives request for information. In this case, you should introduce yourself. We try to avoid in both situations a sense of formality. When mentioning the term “coordinator” of transplantation say it discreetly or draw a veil over it. The choice of one or other depends on the previous consideration. Once introductions are made and the situation assessed, it is vital to be certain the family understands what brain death is and that is signifies the end of life. This understanding can be confirmed by obvious signs such as asking about funeral procedures, talking about the deceased in the past tense, etc. From this point on, the concept of donation-transplantation can be included in the conversation. If the reactions is tears or cries, do not take it personally. It may also be part of the grieving process and is not necessarily a rejection of your request, or even a sign that they feel intruded upon. Perhaps the best manner of showing how donation can help to console afflicted families is at moment, when a gesture of help giving condolences, offering practical help, a telephone or water, maintaining eye contact (without invading personal space), consoling, and aiding tranquility. These 5 minutes spent offering refreshments, handkerchieves, etc, helps the family to regain control of their emotions. Now is the time to decide whether to leave the family alone, calm and comfortable and make a second approach after 30 to 45 minutes. If the family is calm, and wishes it, continue giving information and seek signing of the consent document. If things are not to easy, try the following approaches. Subsequent approaches. By this point, we should have abundant information and be able to forecast the outcome. The only participants should be the direct family, possibly a supportive relative or friend, and the coordination team. One of the misguided ideas sometimes held by the public is that the care of the possible donor may undermined because of the intention to donate. A complete explanation of the donation process helps to allay any fears the family might have on this point. They should also know that the attending doctor is in no way involved in the procurement
1627
of organs and tissues. During second and subsequent approaches, remember to ?? Know what you wish to say, and the reasons for your opinions ?? Admit possible failures in the Health System ?? Avoid the role of accuser; the interview is not to condemn, but to help to improve ?? Forsee possible objections and know how to answer them 0 Use pauses ?? Ask questions such as: ?? “Can I call anyone for you?” ?? “Do you have any questions I can answer?” ?? “Would you like to talk about. . .?” ?? “How did it happen? Where? Did he/she suffer?” These questions are universal and serve to open the way to new communication or to change the subject. As part of the normal grieving process, it will probably be necessary to analyse the death, to see if they could have done anything to avoid it. Probably, even though you say there was nothing to be done, there will be feelings of guilt, sadness and anger. In spite of this, answers that you give now will help in later resolution of these feelings. Try to answer questions as honestly as possible, avoiding phrases such as: “It must have been God’s will, ” “There must be a reason,” “At least he/she didn’t suffer.” Use religious criteria, if the family finds support in this. If so, inform the priest, and use religious information, declarations, etc. The Catholic church has a positive attitude toward donation. POSSIBLE
ARGUMNTS
TO
USE SOLIDARITY Social
“Any of us could need a transplant one day.” These arguments are very useful to convince: try to personalise, eg, “a 24-year-old women in Barcelona needs a liver.” Health professionals to a greater or lesser degree, have a knowledge of anatomy, pathology, phisiology, and general biology, which is superior to that of the public. This knowledge makes us feel like guardians of health and, thus, as arbiters of life and death. While a healthy man is free, when ill he turns to the doctor, and from then loses all significance. For this reason, when talking of social solidarity it is vital to include the interviewer as a potential: 1. Relative 2. Donor 3. Recipient Obviously, coordinators should consider their own reactions in these situations. Group
Alluding to the potential need of the other members of the family. Use questions like: “Do you know anyone who’s had a transplant?” “Do you know anyone who needs an organ or tissues?” Or refer to other mothers, husbands, wives, etc, who are anxiously waiting for an organ.
SANTIAGO
1628 individual Offering to help with legal details, funeral procedures, transport problems, etc, tends to be negative. They must be used carefully to avoid any hint of acting as a merchant. Rather, seek to alleviate the unavoidable details of death. UTILITY Industrial society is characterised by a denial of death, and a displacement of dying from home to a “lone” death in hospital. The idea of “familiarity” with death has been replaced by the “rupture” of dying surrounded by technology. These new characteristics of death facilitate the criteria of utility. Against RUPTURE-life continuing in Against TECHNOLOGY-the certainty of others. death. The severest and most telling criteria of utility could be called “the unstoppable cycle of life,” or, that is to say “why leave him to the worms?” In using these criteria, we must be very positive, looking for a moment of special empathy or connection, if other arguments do not work. GRATIFICATION AND EXTOLLING
These arguments are very positive, elevating the image of the deceased, attributing values such as:
Generosity. Eg, “He liked to help friends, neighbours, etc.” . Reciprocity. “She would have liked to have received a transplant if it had been possible.” ?? Resoluteness. Eg, “If the situation were reversed, would he have accepted?” ?? Love. Eg “If the situation were reversed, would he have accepted?” It is obvious that donation is not desired, all possibilities should be explored, remembering that having used the criteria of utility or social responsibility (condemning others to death), trying not to blame, we should then retire, maintaining all resources of possible aid, except the economic (transfer of the body). Once the interview has finished, all family wishes must be carried out, including dressing the body. We should also inform the family of the progress of the extraction, but only if they have asked specifically. Equally, families should be informed of the resulting transplants if they so wish, without ever revealing names or addresses. Personally I call the coroner to legally confirm that both donation and transplant are anonymous. The helping relationship should be continued as long as the family feels the need for it (they will be your best advertising medium). Never forget that without the families of potential donors THERE ARE NO TRANSPLANTS. ??