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Saudi Journal of Kidney Diseases and Transplantation
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EDITORIAL Table of Contents   
Year : 2004  |  Volume : 15  |  Issue : 1  |  Page : 7-11
Approaching the Donor Family: The COPe-Program


Health Care Communication, Vienna, Austria

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How to cite this article:
Fitzgerald A. Approaching the Donor Family: The COPe-Program. Saudi J Kidney Dis Transpl 2004;15:7-11

How to cite this URL:
Fitzgerald A. Approaching the Donor Family: The COPe-Program. Saudi J Kidney Dis Transpl [serial online] 2004 [cited 2019 Nov 12];15:7-11. Available from: http://www.sjkdt.org/text.asp?2004/15/1/7/32959
The success of solid-organ transplantation has increased the need for an expanded supply of organ donors. There is a progressively widening gap between the number of patients waiting for transplantation and actual organ donors. The shortage of organ donors may be due to many causes, including medical, psychological, cultural, religious or organi­zational reasons.

The shortage of organs will be difficult to address as long as consent rates remain low.

The Process of Family Decision

Knowledge about the wish of the potential organ donor is very helpful for the next of kin and facilitates the decision. It has also been considered as one of the main factors why families refuse to authorize the donation of organs of a relative; they do not know the wish of the deceased. An integrated model of the individuals' attitude to donation was developed. [1] High altruistic thinking and specific knowledge about transplantation is associated with a high pro-donation attitude. Misinterpretations and fears are associated with an anti-donation attitude. Apart from this, cultural or religious opinions can be linked positively or negatively with these two dimensions. A high prevalence of anti­donation inhibits the development of a positive attitude. Whether a positive attitude is finally translated into action depends also on some other issues and time factors. The donation authorization request from the family of a potential donor is a process, and not a specific act. The family must be prepared for the eventuality of imminent death and offered adequate information adjusted to the state of the patent during the critical period. [2] They have to be informed promptly during the diagnostic procedure of brain-death and notified of the results as obtained; diagnosis of death has to be informed promptly when it occurs.

When confusion and grief of the loss of a relative has given way to a moment of greater calm, the moment to ask for donation has arrived.

When these two phases have been carried out correctly, the family will ask what the next procedure will be. When they have been notified on the definitive diagnosis of death, they will suggest or request the machines or ask about burial formalities. That is the best moment to request donation, not before, because it means that they have accepted the state of death of the relative. The definitive answer occurs in 90 % within the first ten minutes. [2]

However, the families of potential donors do have the right to decide whether to help another person and to be asked for this decision at the right time and in the right manner. A person who considers himself very uncomfortable when asking for an organ donation will receive a negative response almost 100 % of the time. [3]

The competence of the staff makes the difference between a family's agreeing and refusing the donation of organs. Attitude and approach of the person asking the question will have a profound effect on a family's response. [4] Doctors and nurses often feel uncomfortable approaching relatives about donation and attribute this to lack of training. Bereaved relatives express dissatisfaction with inappropriate communication and support when brain-death is announced and there­after when a request for donation is made. [5] Barriers in communication create fear of adding to the distress of the relative and the one's own discomfort because of a lack of strategies.

For this reason, special programs have been developed. Training is focused on expe­rience, knowledge, clear answers and good communication skills. To be prepared for certain questions always gives confidence to the requestor. [3],[6] Clear answers are required to questions regarding, for instance, the pro­cedure, organization or religion. [7] Islam for example, mandates quick burial of the dead, so it is crucial to hand over the body and to attend to any forensic aspects immediately after harvesting. Straightforward answers to these kinds of questions have a profound impact on the communication with the family member of the donor. To be able to answer satisfactorily medical, organizational, ethical, and religious questions, acting in accordance with the principles laid out as well as conferring respect towards the family transmits to the family approached, the competence of the requestor and gives them the security required to make a decision. To communicate in extremely emotional situa­tions can be very different from communi­cation in other situations. [8] Individually they are linked to:

  • Different perception of self
  • Different perception of environment
  • Different perception of time, space and stimuli


Therefore, it is most important for the health­care professional to be able to establish a relation and to provide security.

Development of the COPe-Program

After more than ten years of training medical personnel and working with clients, we developed our concept for communication in extremely emotional situations - the COPe-Program.

This program is based on the re-occurrence of certain patterns, which seem to be highly effective in these situations. The constant factors are the extreme circumstances for a person associated with loss of self control. A situation, perceived as painful and not manageable, leads to changes in conscious and cognitive function. The individual resistance when confronted with extremely emotional situations is dependent of several different components of the situation and the intensity of feeling helplessness. Different traumatic causes like danger to life, personal integrity, or basis of existence (e.g. the message of the diagnosis of cancer, victims of aggression or loss of a job), all lead to very similar phenomena and make the various factors in communication important.

Thus, these circumstances can result in an impairment of the perception of the environ­ment, loss of perception of time and space or sensations of de-realization, e.g. to perceive yourself like a stranger, objects and persons which seem to be unreal and artificial. There are phenomena of depersonalization where the own feelings and experiences seem to be strange. Dissociative amnesia may occur resulting in loss of remembrance of impor­tant parts of a conversation. In such moments, the most important goals in communication are the establishment of a relationship and providing security. This determines the situa­tion and the confidence between persons. The confidence gained in this situation by the requestor, representing in this moment the whole transplant team, determines the decision of approval or denial.

However, it should be kept in mind that this is not a therapeutic situation, but a healthy, 'normal' person in an extreme 'not normal' situation. Also it should be emphasized, that asking for approval for organ donation in the helpless situation of the loss of a relative, constitutes a special point. In a situation where there is no possibility to exert any influence on life or death of the relative, the family is able to influence life or death of somebody else. This together with the feeling of having made a decision with which they can identify may play a significant part in the grieving process. [3]

The Three Central Elements of The COPe­program:

The basis of our concept is that a person approaching the family fulfilling the task of a requestor has all the abilities for good communication. However, what this person is going to do is not necessarily what he is able to do.

Contact Through Every Moment in the Requesting Situation Using All Senses to Respect the Actions and Reactions of the Other Person

Contact means to know how to get in touch with a person in a difficult moment and to hold this contact through every moment of the requesting situation. There are several helpful ways to do so and only if this is possible for the requester it will be possible to have the full orientation on the other person, to perceive every feedback, every change, to know what he needs in the moment (e.g. time, distance, support).

The Second Influence We Called Other Resources (or Existing Resources) for the Requesting Situation

This may be the room, the number of persons involved in the communication, the knowledge about medical, ethical, religious issues, or the language itself. Knowledge about the situation, e.g. the phases when it is the best moment to ask for donation, how important it is that the request takes place in a private setting, is an important resource. But also, one has to keep in mind, that the requestor is the one who is confronted with the situation resulting from the confidence the whole team has gained in the preceding period.

Spoken language is not the most important factor in this situation - but the primary structure of the language is. It is easy to imagine, that it is not helpful for somebody in a very emotional situation to be confronted with difficult words or long sentences or two questions in one sentence. The primary structure of language gets important, like positive asking (not to use 'no') and using key words. "You must not fear" is received differently than "look calm on this point". Every person has preferable ways how to think and how to speak. Some persons need plenty of information and details while others need a more global way to explain things. Some persons need options and others need a clear structure. The requestor should perceive the preferred ways of language and infor­mation processing of other persons and thus be able to make the communication easier by translating his way of speaking into the way of the other person. The requestor is the one who needs to adapt his way of communi­cation to a person whose perception and processing of information may be altered.

Person

What the requestor will do and how he will communicate is determined by the abilities he is using in this situation. Whether he has to use all his abilities to act will be deter­mined by what he finds important to do, by his values, and by his normative thinking. All this is based on how he understands his own role in the situation and what sense he is giving the whole topic. This is expressed in the way the person is acting and feeling at the moment. We call this "personal integrity" and self management.

COPe-Training is supporting the health-care professionals to be able to use the different possibilities to facilitate communication in very difficult moments. Recommendable is a combination of training, self-organized learning groups (peer groups) supervision and coaching. The COPe program is the interface of several axes of training.

COPe supports and links trainings and teachings in aspects vital to the concept of "other resources" including religious and ethical aspects concerning brain-death, the procedure of harvesting and preservation of retrieved organs and intensive care issues. This is achieved in co-operation with local experts.

Evaluated programs

An evaluation of our training program for health-care professionals, similar to the COPe­program, showed significant increase in the self-management of the participants in different aspects.

The stress resistance was 12% higher after the training than before. Stress resistance reflects the level, at which the person can handle difficult situations without being influ­enced in his own performance and feelings. The participants had developed significantly more possibilities to act in problematic situa­tions; they were more secure, more active, and self-confident and produced more ideas how to handle the situation. They were less influenced by external difficulties and had reduced feelings of hopelessness. Furthermore, they believed more in the own abilities and strengths to act. [9]

Another program, the DOVES (Donor Opportunity after Valuable Education and Support) program, was developed and imple­mented by "Life Point", the South Carolina Organ Procurement Agency. [10] The critical new concept of this program was to provide intensive emotional support and education to families of potential donors at the time of their sudden and unexpected loss. This was accomplished with a Family Support Service which consists of bereavement counsellors and social workers who were specially trained to inform and support the family of the deceased.

After the implementation of the DOVES program the donation rate increased from 18.2 to 33.3 donors per million of population. The consent rate rose by 139% from 35% of the asked families to 83 %.


   Summary Top


Knowing the importance of influencing factors, the merits of proper communication and to be able to practice it in an automatic, individualized manner is the basis for appro­aching the family of the potential donor. It enables the health-care professional to concen­trate on the very special situation of the relatives who lost a family member and are asked for organ donation. Important for the increase of consent rate is not only a single training program for one person but also an organizational and team developed process, which has to be installed in the transplant program of hospitals or the transplant organization of a country.


   Acknowledgement Top


We thank Professor Abdullah Ahmed Al Khader MD, for his creative ideas to name our program. We also thank him, Professor Faissal A.M. Shaheen MD and Professor Abdulla Ben Mahfood MD, and Professor Wojchiech Rowinsky MD, for the many fruitful discussions which led to the develop­ment of this program.

 
   References Top

1.Schulz KH, Gold S, von dem Knesebeck M, Koch U. Willingness to donate organs - strategies to influence to attitude. Psychother Psychosom med Psychol 2002; 52:24-31.  Back to cited text no. 1  [PUBMED]  [FULLTEXT]
2.Lopez-Navidad A, Caballero F. For a rational approach to the critical points of the cadaveric donation process. Tranplantat Proc 2001;33:795-805.  Back to cited text no. 2    
3.Houlihan P. Requesting organ donations: the hardest question to ask. CMAJ 1987;137:537-9.  Back to cited text no. 3  [PUBMED]  [FULLTEXT]
4.Bires MH. Comparison of consent rates between hospital-based designated requestors and organ procurement coordinators. J Transpl Coord 1999;9: 177-80.  Back to cited text no. 4  [PUBMED]  
5.Gillotti C, Thompson T, McNeilis K. Communicative competence in the delivery of bad news. Soc Sci Med 2002;54:1011-23.  Back to cited text no. 5  [PUBMED]  
6.Verble M, Worth J. Adequate consent: its content in the donation discussion. J Transpl Coord 1998;8:99-104.  Back to cited text no. 6  [PUBMED]  
7.Al-Khader AA. The Iranian transplant programme: comment from an Islamic perspective. Nephrol Dial Transplant 2002;17: 213-5.  Back to cited text no. 7  [PUBMED]  [FULLTEXT]
8.Hilfe LW. Imagination 2001;3 Austriau Journal ost. Ges. Fur angew wdte tiefeu psychologie und auc. Psychother.  Back to cited text no. 8    
9.Fitzgerald A. Effect of special communication trainings for health care professionals in work. (In press)  Back to cited text no. 9    
10.Sade RM. Increasing Organ Donation: A Successful New Concept. Transplantation 2002;74:1142-46.  Back to cited text no. 10    

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Correspondence Address:
Annelies Fitzgerald
Lerchengasse 36/10 1080 Wien, Health Care Communication, Vienna
Austria
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