Inltmirv and C&id Carr Nursing (1992) 8, 14C-148 0 Longman Group UK Ltd 190’2
The nurse’s role in organ donation from a brainstem dead patient: management of the family Caroline Johnson
This paper suggests ways in which the nurse in charge of a brainstem dead patient can help in the management of the patient’s family so that they can more easily and effectively come to terms with his or her death and consider the possibility of organ donation. Many nurses, in spite of their basic training, are unprepared to assume such a role successfully, and three areas are preliminarily identified for closer study, i.e. 1) the preparation of the family for brainstem death, 2) the approach to the family for possible organ donation, and 3) the care of the family throughout the process of organ donation. Certain recommendations are suggested which might help to promote the necessary caring approach to the problem. Review of literature on the nurse’s role in such a situation shows how important that role is thought to be. Guidelines are tentatively laid down for explaining brainstem death and preparing the family for it; and the importance of their acceptance of the finality of death is stressed, so that they can begin the essential grieving process. Emphasis is also laid on the need for the nurse to adopt a sensitive, caring and supportive attitude which will help the family in their bereavement and encourage them to accept the possibility of organ donation. In conclusion, it is recommended that nurses be provided with more detailed advice and guidance on managing the family in the many aspects of such a situation.
INTRODUCTION Nurses working in critical care areas will at times have to cope with a patient who is brainstem dead and who may be considered for possible organ donation. They will then realise that managing the family effectively so that its members can come to terms with the patient’s death is of the utmost importance. It appeared to
Caroline Johnson RGN, Staff Nurse, ITU, Western General Hospital, Edinburgh (Requests for offprints to CJ) Manuscript
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me whilst working in an Intensive Therapy Unit (ITU) that when this most sensitive and difficult situation arose, some nurses seemed unprepared and unable to deal with the emotions of the patient’s family and the ethical and moral issues involved. Nurses have a responsibility to offer caring, compassionate and knowledgeable support to the family, and I believe that the skills required for handling emotional situations like this are not sufficiently emphasised during nurse training and post registration years. Nurses appear inadequately prepared to help a family in an informed and confident way. The following literature review and explanation of:
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- Preparing the family for brain stem death - Approaching the family for possible organ donation - Caring for the family throughout the process of organ donation may be helpful situation.
in attempting
to remedy
that
REVIEW OF THE LITERATURE While reviewing the literature it was obvious that there was a vast amount written about organ donation in general, but information on and discussion of the nurse’s role in the management of the organ donor’s family was more limited. Most of the relevant literature was found in articles in journals and very little in books, and a variety of unpublished sources, mainly materials used as hand-outs, and some videotapes, were also used. Few studies on the particular role of nurses in organ donation were found, but those identified stressed their vital importance. Stoeckle (1990), for instance, states that ‘the nursing profession performs many roles in the area of- organ procurement’, and Hart (1986) and Carbary (1987) point out that one important aspect of the nurses’ role in organ recovery is helping the donor’s family. Sophie et al (1983) suggest specifically that identifying potential donors, approaching families about organ donation and caring for organ donors, is a vital part of an intensive care nurse’s job. The recognition of potential donors by intensive care nurses was also investigated by Stark et al (1984) who suggest that the positive attitudes of these nurses influence the family towards organ donation, and that most families, when approached with helped through sensitivity, were the by knowing that the bereavement process deceased had been able to donate organs. Buckley (1987), Houlihan (1988), and Maher &Strong (1989) accentuate the fact that, in order to fulfil this role, staff working in intensive care units and dealing with families of organ donors need a sound knowledge of organ donation and brainstem death, in addition to good communi-
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cation and interpersonal skills, as it is often the nurses who ‘find themselves reinforcing and supplementing the information presented by the physician and discouraging false hopes’ (Maher & Strong, 1989). Coupe (1990) states that: ‘With these skills and this knowledge they can help the family understand the issues involved, support them in their decision-making and begin to facilitate grieving’, and Burgess (1989) agrees. ‘They must believe their loved one had died, even though cardiac and respiratory functions are being maintained (Snyder & Peter, 1989); so, by helping the family understand the concept of brain death, the nurse can enable them to begin the necessary process of grieving. Hart (1986) says that, by being honest with the family, and relaying information to them early, the nurse prepares ‘the family members for death in advance’ and ‘allows them time to start the grieving process.’ This is also agreed by a number of other authors, for example, Kichards (1987) Burgess (1989) and Coupe (1990). Nurses must be extremely sensitive to family needs, and should implement measures which will facilitate the grieving process. (Farrell, 1988) and Daly (1982) suggest it is helpful if the nurse is aware of the various stages of the grieving process and their manifestations, so that she can anticipate and understand the relatives’ needs. ‘The nurse becomes the pivot for the family and is expected to provide support and realistic advice,’ states Allan (1989), who goes on to indicate that it is essential for the nurse to be aware of the extent of the family’s knowledge of the patient’s condition and whether this needs to be reinforced. Care of the family is as important as care of the organ donor (Kichards, 1987). If the family are not cared for correctly, then it is unlikely that there will be a donor (Burgess, 1989). ‘Nurses must be prepared to help the family through the process of organ donation’ (Satterthwaite, 1990), for it is to the nurse that the family will turn with their questions. While the relatives are burdened by the trauma of the patient’s condition, they can easily overlook the issue of organ donation. They may not know if their loved one carried a donor card of if he or she had specific views on organ donation. Wight (1987) states that this does not
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indicate that they are unwilling or unprepared to think about the posibility, so staff should always consider organ donation before support systems are withdrawn. The introduction by a nurse of the idea of organ donation is not necessarily a painful subject, but ‘serves to remind distracted family members of a patient’s expressed desire to donate his organs’ (Norton, 1990). Family members may find it difficult to decide to donate their loved one’s organs, they may be torn between facing the reality of the death and the desire to help others (Hart, 1986). The nurse can ‘ease the pain of this decision by providing support, being prepared to answer questions, and acknowledging the feelings of grief and loss’ (Hart, 1986). It is felt by many authors that families often look for a meaning in the death of a family member, and that some welcome organ donation as an act of consolation which actually helps to diminish their feelings of loss (Williams, 1985; Crombie & Watson, 1987; Keogh, 1987b; Coolican, 1987; Kozlowski, 1988; Snyder & Peter, 1989; Peele, 1989; Burgess, 1989; Coupe, 1990; Norton, 1990). Relatives experience a wide spectrum of emotions that create feelings of confusion and immense numbness (Farrell, 1989). These feelings must be resolved if relatives are to come to terms with death. Daly (1982, p.88) indicates that the ‘ability to communicate that the patient is viewed as their loved one and as an individual rather than a “machine” or “kidney donor” often alleviates distress and engenders trust.’ The strong rapport which intensive care nurses often develop can lead to trust and open conversation. This may enable the family to discuss the situation, without committing themselves, before consent to organ donation (Maher 8c Strong, 1989). Such discussion may help nurses too. ‘Offering the option of donation to the potential donor family allows the nurse to experience a positive end to a sad beginning’ states Peele (1989). Dilemmas occur when staff are worried about adding to the family’s distress. Consequently the whole procedure of approaching relatives about organ donation may sometimes be done rather clumsily, with staff giving inadequate support and information to the family (Coupe, 1990).
How a potential donor is approached, by whom and where, can affect whether the family agrees to donation and how they grieve afterwards. (Laurent, 1989) Keogh (1987b) states that ‘often the most difficult aspect of organ donation seems to be the discussion with relatives.’ She suggests that the person to approach the next of kin with this sensitive matter should have appropriate experience. It should be someone who is close to the family: ‘This may be a physician, nurse, social worker or member of the clergy’ (Kozlowski, 1988). If the nurse involved is opposed to or uncomfortable with the concept of brainstem death and organ donation, then this will come through to the family. Families deserve the opportunity to make up their own minds (Peele, 1989). Studies by Stoeckle (1987) and Borozny (1988) suggest that nurses are uncertain about the concept of brain death and criteria for diagnosing it, and that this indicates a real need for education. ‘If nurses wish to fulfil a role as patient public and family advocate, educator counsellor they must not only become well versed in the determinants of brain death, but also have an understanding of the related legal, religious and moral issues’ (Borozny, 1988).
THE MANAGEMENT FAMILY
OF THE
Preparing death
for brainstem
the family
Sudden death is a devastating event for any family. Most brainstem dead potential organ donors are young victims of a sudden, traumatic injury or illness who were previously in good health. This suddenness makes acceptance of death more difficult for the family and increases their need for support. When death is probable or certain, the aim of intervention needs to shift from saving life to that of a good death and promoting good grief for the family (Le Poidevin, 1987). The way in which the nursing staff behave at the time of
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death greatly affects the family, and it is important for nurses to do whatever will contribute towards healthy long-term adjustment in bereavement. Unfortunately, nurses are not usually adequately trained to deal with powerful emotions or to talk about difficult and distressing topics. We live in a society that leads us to believe that the expression of grief is somehow not desirable. But, as nurses, one of the most important things we can do to help the family is to start a healthy grieving reaction. ‘The nurse is usually the first person to make contact with the relatives and will certainly become their most consistent contact in the hospital’ states Allan (1988). It is important from the time of admission of the patient for a nurse to establish a rapport with the family and inform them of what is being done for their relative. The seriousness of the problem must be emphasised from the start. The better prepared they are, the easier the adjustment to death. This is no time for false hopes or give mixed messages; the family have something real to worry about. Informing the family of the impending death of their relative can be a traumatic experience for all concerned (Farrell, 1988). Wherever possible the relative should not be alone when being told; efforts should be made by nursing staff to contact other family members and friends so that they can comfort each other at this time. The bearer of bad news should, if possible, be the member of staff who has established the closest relationship with the family. As Burgess states (1989): ‘There is no place at this time for the brusque doctor or nurse who presents the facts as a fait accompli.‘The nurse at the bedside is given many oportunities to prepare the way and, for example, may be asked by the family: ‘Nurse, you must have seen this situation before; tell me honestly, is there any hope of my relative recovering?’ At this point the nurse has an opportunity to say, if appropriate, that the situation is not at all hopeful. ‘The seeds of bad news must be sown - it is morally wrong to pretend there is hope when there is not, so this is no time for false reassurance’ (Burgess, 1989). Nurses must be aware of the extent of the family knowledge of their relative’s condition so that new information or reinforcement of exist-
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ing information is given consistently. For example, a nurse should be present when the doctor is informing the family about brainstem death and the probability of death, in case the family members do not fully understand what they are being told and need further explanation later when the doctor has gone. When a person is critically ill or injured to such an extent that brain death is diagnosed (Pallis, 1983), modern medicine and technology can sustain life in a form that few can comprehend, so the concept of brainstem death is difficult for the family to understand and come to terms with, because though the spirit has gone, the body lives on maintained by machinery. Relatives are often left confused and have said to me: ‘But he’s still breathing, still warm; couldn’t he just be in a coma?‘They experience feelings of shock, disbelief, denial and confusion and are unable to accept or comprehend their loss. This is where the nurse can re-explain brainstem death in simple terms. It is important to speak slowly and softly, giving space between words and sentences, so that the family can take in what is said and have the opportunity to ask questions. Peele (1989) suggests that it is good idea for the nurse to prepare for this eventuality by practising: ‘first explaining it to a colleague in order to be more comfortable with the explanation before delivering it to the family.’ Another possibility is for the nurse to record it on tape and play the tape back until speaking about the situation comes more easily and can be done comfortably. An example of how to explain brain death to a family could be: ‘Following the head injury/illness which your relative has sustained, the brain swells and, because it is contained in the skull which is like a rigid box, it becomes compressed and therefore blood cannot get through to the brain; it is starved of the necessary life-giving oxygen, and damage will occur. There is a part of the brain at the base known as the brainstem. It controls breathing, blood pressure, heart rate and level of consciousness. When the brain becomes so swollen that the brainstem is affected the doctors then have to carry out tests to check if the brainstem is still functioning. If it
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is not functioning it means your relative will never regain consciousness, nor be able to breathe nor, eventually, have a heart beat; he will not recover.’ Drawing a picture is often helpful in assisting the family to visualise brain death. A great deal of time and patience will be required to explain this. Once the family understand brainstem death, then is the time to give them the option of organ donation.
Approaching the family about possible organ donation Staff will need to decide, in the light of individual circumstances, who is best qualified to approach the family. It would normally be a senior hospital doctor who has some experience in carrying out personal interviews of a sensitive nature, or the Transplant Coordinator. But it could be the nurse who is the most appropriate person because she/he has developed a solid trusting relationship with the family, and it is her/his role that is explored here. According to Norton (1990) nurses should be comfortable about their own feelings on organ donation before entering into highly sensitive discussions with grieving families, and most nurses ‘feel more secure when they realise that giving these life-saving gifts can help ease survivors’ grief.’ Whether consent to donate is obtained or not is often the result of the manner in which the family was approached (Stoeckle 1990). Families need time to adjust to the pronouncement of brain death before they are offered the option of organ donation (Kozlowski, 1988). Exactly how and when this delicate subject should be broached to relatives is a matter of fine judgement requiring experience and tact; it is never easy. In most units the approach to relatives is made after the first set of brainstem death tests have been carried out and before the second set. The nurse who approaches the family requires certain qualities and skills, and those recommended by Le Poidevin (1987) are: 1. A thorough knowledge and transplantation.
of organ donation A well-informed
2.
3.
4. 5.
6.
nurse can dispel any fear or worries a family may express because of their understandable lack of knowledge. The ability to communicate clearly, accurately and appropriately in a manner that is kind, sensitive, sincere and professional. Skills in non-verbal communication techniques, language choice, common family concerns and a knowledge of the legal implications of organ donation. The ability to establish a rapport with the family and put them at ease. The ability to tolerate the family’s distress without becoming either too detached or too overwhelmed. Emotional maturity. A nurse who can recognise and acknowledge her emotional response to distress is better able to deal with it.
The approach to the subject of organ donation should be made in a positive manner showing sensitivity and a feeling for the relative’s distress, and must convey the belief that it is beneficial. The nurse should bear in mind the legal implications. If the patient has signed a donor card or made his/her wishes known, then there is no legal requirement for the relatives to confirm their lack of objection; but it is good practice to take their views into consideration. If the donor lived closely with someone to whom he was not related, it is advisable to seek the views of that person as well as those of the relatives. It is important for the nurse to take the family away from the critical care area to a quiet and secluded sitting room for any discussion. Organ donation is an emotional private decision and should not be discussed in a waiting room with other visitors present, or near the patient’s bedside where the family will be distracted and cannot concentrate on the subject. It also shows disrespect for the patient as a person to discuss this in front of him. Once in a private setting, the nurse should try to appear relaxed and comfortable. Openness and empathy can be conveyed with relaxed body language such as uncrossed legs and open hands placed in the lap. A nurse’s personal discomfort with the issue may convey disapproval; the information then loses its neces-
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sary objectivity. The role of the nurse is to present information, not to persuade. Therefore a nurse opposed to organ donation should not be involved in requesting it. The nurse’s initial approach should be kept simple and unpressured, for example: ‘1 know this is a difficult time for you and that you have many things to think about, but do you know whether (patient’s name) had considered or discussed organ donation?’ The nurse should take care to avoid words of sympathy which might be perceived as being trite and insincere, for example: ‘I know how you must feel.’ If the family has already discussed organ donation, making the decision will be easier. It may be helpful to explain to relatives that they are being asked to act as agents in expressing what they feel to be the wishes of the patient. As Keogh states (1987a). ‘If it is the patient’s wish that others should benefit in the event of his death, we all share the responsibility of trying to fulfill that wish for the patient.’ Time should be given for the family to discuss the matter amongst themselves privately without interruptions. Some families will be able to give an answer immediately. If they are undecided, it is best to give further time for reflection - perhaps an hour - and then return and raise the subject again and ask for a decision. If they do agree (a witnessed verbal consent is enough), thank them, but do not use misleading language, for example: ‘He will live on in others.’ If they give a firm refusal, graciously respect the decision; if it is an aggressive refusal, apologise for causing distress, but give the reason why the question had to be asked, that is, that a lot of arrangements would have had to be made if a donation were to go ahead. When discussing donation, the nurse should be aware of the family’s potential concern regarding how long the donation procedure will take. This depends on what organs are to be donated. For example, kidney donation is approximately 2-3 h, heart, lung or liver, 6- 10 h. Families often worry about disfigurement of the patient, but they should be assured that all wounds are closed as for any surgical incision, and that there will be no visible signs of disfigurement.
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Some families may have firm religious or personal opposition to the concept of organ donation and this should be respected. For other families the reason for refusing may simply be that they do not know their relative’s wishes and, faced with having to make the decision when the family is already in a state of crisis, find it easier to say no than to agonise over yet another dilemma (Coupe, 1990).
Caring for the family throughout the process of organ donation Caring for and supporting the family begins from the time the patient is admitted. Their intense grief presents the nurse with a formidable challenge. She has to cope with the strong emotions aroused once they have been informed of their loved one’s impending death and, at the same time, she may have to suggest organ donation. At this time, says Burnard (1987), the nurse should not attempt to reassure and calm the family down, but should allow them to experience their feelings fully. All relatives react in different ways and must be treated appropriately. The nurse needs to know all these possible reactions and how to deal with them. For example, an angry reaction should not be taken as a personal affront; the nurse should stay calm and confident and must not retaliate. Similarly, in the case of a relative who becomes hysterical, the nurse should wait for him or her to calm down; eventually the person will become exhausted. It is unhelpful to look shocked or disapproving, but when such distress is over the nurse can offer comfort, and the relatives’ room for privacy and refreshment facilities. Grieving can be assessed by observing behaviour which is characteristic of the common stages of grief. These include denial, anger, bargaining, depression and acceptance, which the nurse should confirm as being normal and expected. Despite the intrusion of life-support machinery, the nurse should do all she can to promote a warm and caring environment where the family can be encouraged to participate in simple nursing tasks. Suggesting to the family that they spend time at the bedside may help them begin to accept the finality of the situation.
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The nurse should call the patient by name, touch him, and care for him or her as she would any other patient. Exposing the patient’s hand encourages the family to touch and talk to him. They may want to give their relative a cuddle, but may be frightened to ask or to do so in view of the ‘drips’ and ‘machinery’ attached to the patient. The nurse should not wait for the family to ask but should interpret the concerns or wishes they may have. Making every effort to be sensitive to the family needs will do much to ease their distress during this traumatic time. Families frequently base false hopes that a patient is getting better on a heart beat or urinary output; this is not helped when they see the ventilatorinduced chest movements and that the patient does not look any different to them. The nurse must be honest with the family, reinforce the concept of brain death, and emphasise that all efforts to sustain life are futile. Families often remember the spirit and manner in which they were cared for by staff. They will feel consoled if they are confident that the nurse did all that was possible to maintain the comfort of their loved one, and their distress and sadness is lessened accordingly. Persuading the family to talk about their loved one, and personahsing his or her life picture, can be important in enabling the nurse to view the patient more comprehensively and will allow her to help the family deal with the dying process in a personal and humane way. The relatives should be encouraged to say goodbye to their loved one after the second set of brain death tests, which is the legal time of death (Pallis 1983; United Kingdom Code of Practice, 1983). If the donor is a child, the parents may wish to hold it, and if at all possible this should be allowed. It may be helpful to suggest to the family that they cut a lock of hair. This is such a simple gesture, yet it is sometimes not thought about at the time; it can often provide much comfort. However, the overwhelming grief of the family must never be forgotten: as a young donor’s mother said of her daughter, ‘Leaving her for the last time, supported by machines but lookingjust like our own sleeping Katie, was the most wrenching experience of our lives’ (Coolican, 1987). The nurse should offer the relatives the
opportunity to visit the body of their loved one in the chapel of rest after donation. Careful arrangement and presentation of the body will allow the relatives to have a physical contact, share some final thoughts with their loved one, and bring home the reality of loss. The nurse should not hesitate to call on the Transplant Coordinator or hospital chaplain to augment her support of the family. The Transplant Coordinator can clarify doubts, answer further questions the family may have, orjust be ‘available’ for them. It is she who makes contact with the family after the patient’s death, giving them information about the recipients if requested, and providing the opportunity for further contact or support. Hospital social workers should be asked to help with families that give special cause for concern. The hospital chaplain or priest is always available and the nurse should acknowledge the importance of spiritual needs at this time, and can initiate and facilitate the meeting of them for the family if required. Very often, despite this help with the hospital, families are offered no professional or voluntary bereavement support afterwards. There are, however, several bereavement support groups available (see Appendix). The nurse should give information about the support groups and, if possible, provide reading material for the family or suggest where it can be obtained. It may be of great help to them in the months to come as they adjust and work through the problems of bereavement.
CONCLUSION Nurses must recognise the important role they have to play in meeting the needs of a family who are faced with brainstem death in a relative and possible organ donation. Failure to meet these needs may lead to an increase in the distress and anxiety which the family members experience, and may complicate their ability to come to terms with their loss. It is essential for nurses who care for these patients and their families to share their knowledge with any inexperienced
staff, thus helping
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them to gain insight and better understanding of the subject. Tentative recommendations have been made here as to how a nurse can deal with members of a brain-dead person’s family. Nurses at student level and in post-registration years should be provided with more of such guidance and advice on the subject. For example: 1. The use of role-play so as to become more aware of personal reactions and to develop skills to cope with the emotional situations which a nurse may be likely to encounter. 2. Encouraging nursing colleges and hospital in-service departments to provide up-todate information and guidance, for example by enlisting the help of the Transplant Coordinator. 3. Inviting professional and/or voluntary bereavement support groups to speak with nurses and share any new supportive methods and techniques of caring. Managing the family in this situation demands a high degree of professionalism, and it is worth remembering that, although the whole concept of brainstem death and organ donation may be distressing for staff who look after these patients and their families, at the same time it can be rewarding; for the fact remains that lives are saved by organ donation, and this should be a powerful source of comfort to all concerned.
Acknowledgements I am grateful for the advice and encouragement given to me in the preparation of this essay by Mrs Annette E. McIntosh, the Module Coordinator. I would also like to thank Miss Frances Smithers, the Transplant Coordinator, for her guidance and for the loan of videotapes and reading material. I am also greatly indebted to Mrs Josephine Crawford for sharing her personal experience of organ donation as the mother of a donor son, which confirmed my ideas and recommendations for the improvement of nurse education on this subject, and for providing me with helpful reading material.
References Allan D 1988 The ethics of brain death. Professional Nurse 3 (8): 295-98 Allan D 1989 Brain death. Nursing Times, 85 (35): 30-32
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Borozny M L 1988 Brain death and critical care nurses. The Canadian Nurse 84 (1): 25-27 Buckley P E 1987 A part to play. Nursing Times 83 (6): 30 Burgess J 1989 Care of the organ donor and the family. In: Monkhouse P M led1 Asoects of Renal Care. 3rd edn. W B Saunders, iondo; 12G.32 Burnard P 1987 Coping with emotion in intensive care nursing. Intensive Care Nursing 3 (4): 157-59 Carbary L 1987 The nurse’s role in obtaining organ donations. Journal of Practical Nursing 37 (1): 41-43 Coolican M B 1987 Katie’s legacy. American Journal of Nursing 87 (4): 483-85 Coupe D 1990 Donation dilemmas. Nursing Times 86 (4): 34-36 Crombie A, Watson B 1987 Donors welcome. Nursing Times 83 (6): 29 Daly K 1982 The diagnosis of brain death: an overview of the neurosurgical nursing responsibilities. Journal of Neurosurgical Nursing 14 (2): 85-89 Farrell M 1989 Dying and bereavement. Intensive Care Nursing 5 (1): 39-45 Hart D 1986 Helping the family of the potential organ donor: crisis intervention and decision making. Journal of Emergency Nursing 12 (4): 2 10-l 2 Houlihan P 1988 The role of health professionals in organ donation. The Canadian Nurse 84 (1): 21-22 Keogh A M 1987a The role of the transplant coordinator. Nursing Times, 83 (9): 48-49 Keogh A M 1987b Transplantation and organ donation. Nursing 16 3 (16): 590-92 Kozlowski L M 1988 Case study in identification and maintenance of an organ donor. Heart and Lung 17 (4): 366-71 Laurent C 1989 A death with a difference. Nursing Times 85 (3): 16-17 Le Poidevin s ‘1987 The management of bereaved relatives and approaching the next of kin about organ donation. Unpublished hand-out from the Psychiatry
Department. London Hospital, Medical College, London Maher M E, Strong S 1989 Organ donation: a nursing perspective. lournal of Neuroscience Nursing, . 21 (6): 357-61 Norton D J 1990 Helping patients give the gift of life RN 53 (12): 30-34 Pallis C l98$ ABC of brainstem death. The British Medical Journal Peele A S 1989 The nurse’s role in promoting the rights of donor families. Nursing Clinics of North America 24 (4); 939-49 Richards J 1987 Coping mechanisms. Nursing Times 83 (8): 43-44 Satterthwaite H J IQ90 The ethics of organ transplantation. Professional Nurse 5 (8): 434-38 Snyder’L A, Peter N K 1989 How to manage organ donation. American Journal of Nursing, 89 (IO): 129698 Sophie L R, Salloway J C, Sorock G, Volek P, Merkel F K 1983 Intensive care nurses’ perceptions of cadaver organ procurement. Heart and Lung 12 (3): 261-67 Stark 1 L, Reiley P, Oseicki A, Cook L 1984 Attitudes affecting organ donation in the intensive care unit. Heart and Lung 13 (4): 400-04 Stoeckle M L 1996 Attitudes of critical care nurses
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toward organ donation. Dimensions of Critical Care Nursing, g(6): 354-61 Whittaker M 1990 Beaueath. burv or burn. Nursina‘3 Times 86 (40): 34-35 ’ Wight C 1987 Concerns of the family. Nursing times 83 (13): 53 Williams L I985 Organ procurement: what nurses need to know. Critical Care Quarterly 8 (1): 27-30
Further reading Cathcart F 1989 Coping with distress. Nursing Times 85 (43): 33-35 . Crandall B C 1987 Identifying dilemmas in caring for brain dead orean donors in the OR. AORN tilournal 45 (5): 943-4; Core S M, Hinds C J, Rutherford A J 1989 Organ donation from intensive care units in England. British Medical Journal 299: 1193-97 Health Departments of Great Britain and Northern Ireland 1983 Cadaveric organs for transplantation: A code of practice including the diagnosis of brain death. Drawn up and rev&ed by a-working Party on behalf of the Health Deoartments of G-eat Britain and Northern Ireland ’ Hopkins T K 1990 A different kind of recovery. RN 53 (12): 35-36 Kennedy A 1989 Giving concern. Nursing Times 85 (35): 33 Lamb D 1990 Organ transplants and ethics. Routledge, London Murphy Pat 1986 When a non-death death occurs. Nursing 86 16 (7): 34-39 Nicklin P 1987 Attitudes towards death and dying among nurses and doctors. Nursing Times 83 (44): 58 Simpson A 1987 Brainstem death. Nursing Times 83 (8): 41-42 Worden J W 1983 Grief counselling and grief therapy. Tavistock Publications, London Wright A, Cousins I, Upward1 1988 Matters of death and life: a study of bereavement support in NHS hospitals in England. KF Project Paper. Kings Fund Publishing Office, London
Videotapes Transplant Equations. London Scientific Films Ltd, 57-59 Rochester Place, London, NW I 9JU The Right to Choose. London Scientific Films Ltd., 57-59 Rochester Place, London, NW1 9IU Life from Death. Prepared from the Department of Health and Central Office of Information. UK. January 1990
Appendix Bereavement
Support Groups
British Organ Donor Society (BODY) This is a volunatry organisation whose members come from families who have been accidentally brought together by organ transplantation. Most of the members are donor or recipient families, but there is now an increasing number of waiting transplant families making contact and getting support from BODY. The Society is run by John and Margaret Evans, who are the parents of a donor son. From personal experience they and other involved families can give support to donor, recipient and waiting families. Further information can be obtained by contacting the following address or phone number: BODY, Balsham, Cambridge, CBI 6DL. Tel: (0223) 893636
The Compassionate
Friends
This is an international organisation of bereaved parents offering friendship and understanding to other bereaved parents. It offers no miracle cure, but comfort and the consolation that in time, after the pain and turmoil, life will come to have some meaning once more. Further information and leaflets can be obtained from: The Compassionate Friends, National Secretary, 6 DenmarkStreet, Bristol, BSl 5DQTel: (0272) 292778
Cruse - Bereavement
Care
CRUSE was founded in 1959 and offers to help all bereaved people wherever they live. It gives this help through links with RUSE Headquarters or through contact with a local Branch. It includes counselling; someone to share things with: advice and information on practical matters; and opportunties for contact with others. It is personal and confidential help. Branches run courses for volunteer counsellors to work with CRUSE and for all interested in bereavement. For further
local information,
contact:
CRLJSE Bereavement Care, Scottish Office, 24a Barony Street, Edinburgh, EH3 6NY. Tel: (031) 557 8191
The nurse’s role in organ donation from a brainstem dead patient: management of the family Caroline Johnson
This paper suggests ways in which the nurse in charge of a brainstem dead patient can help in the management of the patient’s family so that they can more easily and effectively come to terms with his or her death and consider the possibility of organ donation. Many nurses, in spite of their basic training, are unprepared to assume such a role successfully, and three areas are preliminarily identified for closer study, i.e. 1) the preparation of the family for brainstem death, 2) the approach to the family for possible organ donation, and 3) the care of the family throughout the process of organ donation. Certain recommendations are suggested which might help to promote the necessary caring approach to the problem. Review of literature on the nurse’s role in such a situation shows how important that role is thought to be. Guidelines are tentatively laid down for explaining brainstem death and preparing the family for it; and the importance of their acceptance of the finality of death is stressed, so that they can begin the essential grieving process. Emphasis is also laid on the need for the nurse to adopt a sensitive, caring and supportive attitude which will help the family in their bereavement and encourage them to accept the possibility of organ donation. In conclusion, it is recommended that nurses be provided with more detailed advice and guidance on managing the family in the many aspects of such a situation.
INTRODUCTION Nurses working in critical care areas will at times have to cope with a patient who is brainstem dead and who may be considered for possible organ donation. They will then realise that managing the family effectively so that its members can come to terms with the patient’s death is of the utmost importance. It appeared to
Caroline Johnson RGN, Staff Nurse, ITU, Western General Hospital, Edinburgh (Requests for offprints to CJ) Manuscript
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me whilst working in an Intensive Therapy Unit (ITU) that when this most sensitive and difficult situation arose, some nurses seemed unprepared and unable to deal with the emotions of the patient’s family and the ethical and moral issues involved. Nurses have a responsibility to offer caring, compassionate and knowledgeable support to the family, and I believe that the skills required for handling emotional situations like this are not sufficiently emphasised during nurse training and post registration years. Nurses appear inadequately prepared to help a family in an informed and confident way. The following literature review and explanation of:
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- Preparing the family for brain stem death - Approaching the family for possible organ donation - Caring for the family throughout the process of organ donation may be helpful situation.
in attempting
to remedy
that
REVIEW OF THE LITERATURE While reviewing the literature it was obvious that there was a vast amount written about organ donation in general, but information on and discussion of the nurse’s role in the management of the organ donor’s family was more limited. Most of the relevant literature was found in articles in journals and very little in books, and a variety of unpublished sources, mainly materials used as hand-outs, and some videotapes, were also used. Few studies on the particular role of nurses in organ donation were found, but those identified stressed their vital importance. Stoeckle (1990), for instance, states that ‘the nursing profession performs many roles in the area of- organ procurement’, and Hart (1986) and Carbary (1987) point out that one important aspect of the nurses’ role in organ recovery is helping the donor’s family. Sophie et al (1983) suggest specifically that identifying potential donors, approaching families about organ donation and caring for organ donors, is a vital part of an intensive care nurse’s job. The recognition of potential donors by intensive care nurses was also investigated by Stark et al (1984) who suggest that the positive attitudes of these nurses influence the family towards organ donation, and that most families, when approached with helped through sensitivity, were the by knowing that the bereavement process deceased had been able to donate organs. Buckley (1987), Houlihan (1988), and Maher &Strong (1989) accentuate the fact that, in order to fulfil this role, staff working in intensive care units and dealing with families of organ donors need a sound knowledge of organ donation and brainstem death, in addition to good communi-
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cation and interpersonal skills, as it is often the nurses who ‘find themselves reinforcing and supplementing the information presented by the physician and discouraging false hopes’ (Maher & Strong, 1989). Coupe (1990) states that: ‘With these skills and this knowledge they can help the family understand the issues involved, support them in their decision-making and begin to facilitate grieving’, and Burgess (1989) agrees. ‘They must believe their loved one had died, even though cardiac and respiratory functions are being maintained (Snyder & Peter, 1989); so, by helping the family understand the concept of brain death, the nurse can enable them to begin the necessary process of grieving. Hart (1986) says that, by being honest with the family, and relaying information to them early, the nurse prepares ‘the family members for death in advance’ and ‘allows them time to start the grieving process.’ This is also agreed by a number of other authors, for example, Kichards (1987) Burgess (1989) and Coupe (1990). Nurses must be extremely sensitive to family needs, and should implement measures which will facilitate the grieving process. (Farrell, 1988) and Daly (1982) suggest it is helpful if the nurse is aware of the various stages of the grieving process and their manifestations, so that she can anticipate and understand the relatives’ needs. ‘The nurse becomes the pivot for the family and is expected to provide support and realistic advice,’ states Allan (1989), who goes on to indicate that it is essential for the nurse to be aware of the extent of the family’s knowledge of the patient’s condition and whether this needs to be reinforced. Care of the family is as important as care of the organ donor (Kichards, 1987). If the family are not cared for correctly, then it is unlikely that there will be a donor (Burgess, 1989). ‘Nurses must be prepared to help the family through the process of organ donation’ (Satterthwaite, 1990), for it is to the nurse that the family will turn with their questions. While the relatives are burdened by the trauma of the patient’s condition, they can easily overlook the issue of organ donation. They may not know if their loved one carried a donor card of if he or she had specific views on organ donation. Wight (1987) states that this does not
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indicate that they are unwilling or unprepared to think about the posibility, so staff should always consider organ donation before support systems are withdrawn. The introduction by a nurse of the idea of organ donation is not necessarily a painful subject, but ‘serves to remind distracted family members of a patient’s expressed desire to donate his organs’ (Norton, 1990). Family members may find it difficult to decide to donate their loved one’s organs, they may be torn between facing the reality of the death and the desire to help others (Hart, 1986). The nurse can ‘ease the pain of this decision by providing support, being prepared to answer questions, and acknowledging the feelings of grief and loss’ (Hart, 1986). It is felt by many authors that families often look for a meaning in the death of a family member, and that some welcome organ donation as an act of consolation which actually helps to diminish their feelings of loss (Williams, 1985; Crombie & Watson, 1987; Keogh, 1987b; Coolican, 1987; Kozlowski, 1988; Snyder & Peter, 1989; Peele, 1989; Burgess, 1989; Coupe, 1990; Norton, 1990). Relatives experience a wide spectrum of emotions that create feelings of confusion and immense numbness (Farrell, 1989). These feelings must be resolved if relatives are to come to terms with death. Daly (1982, p.88) indicates that the ‘ability to communicate that the patient is viewed as their loved one and as an individual rather than a “machine” or “kidney donor” often alleviates distress and engenders trust.’ The strong rapport which intensive care nurses often develop can lead to trust and open conversation. This may enable the family to discuss the situation, without committing themselves, before consent to organ donation (Maher 8c Strong, 1989). Such discussion may help nurses too. ‘Offering the option of donation to the potential donor family allows the nurse to experience a positive end to a sad beginning’ states Peele (1989). Dilemmas occur when staff are worried about adding to the family’s distress. Consequently the whole procedure of approaching relatives about organ donation may sometimes be done rather clumsily, with staff giving inadequate support and information to the family (Coupe, 1990).
How a potential donor is approached, by whom and where, can affect whether the family agrees to donation and how they grieve afterwards. (Laurent, 1989) Keogh (1987b) states that ‘often the most difficult aspect of organ donation seems to be the discussion with relatives.’ She suggests that the person to approach the next of kin with this sensitive matter should have appropriate experience. It should be someone who is close to the family: ‘This may be a physician, nurse, social worker or member of the clergy’ (Kozlowski, 1988). If the nurse involved is opposed to or uncomfortable with the concept of brainstem death and organ donation, then this will come through to the family. Families deserve the opportunity to make up their own minds (Peele, 1989). Studies by Stoeckle (1987) and Borozny (1988) suggest that nurses are uncertain about the concept of brain death and criteria for diagnosing it, and that this indicates a real need for education. ‘If nurses wish to fulfil a role as patient public and family advocate, educator counsellor they must not only become well versed in the determinants of brain death, but also have an understanding of the related legal, religious and moral issues’ (Borozny, 1988).
THE MANAGEMENT FAMILY
OF THE
Preparing death
for brainstem
the family
Sudden death is a devastating event for any family. Most brainstem dead potential organ donors are young victims of a sudden, traumatic injury or illness who were previously in good health. This suddenness makes acceptance of death more difficult for the family and increases their need for support. When death is probable or certain, the aim of intervention needs to shift from saving life to that of a good death and promoting good grief for the family (Le Poidevin, 1987). The way in which the nursing staff behave at the time of
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death greatly affects the family, and it is important for nurses to do whatever will contribute towards healthy long-term adjustment in bereavement. Unfortunately, nurses are not usually adequately trained to deal with powerful emotions or to talk about difficult and distressing topics. We live in a society that leads us to believe that the expression of grief is somehow not desirable. But, as nurses, one of the most important things we can do to help the family is to start a healthy grieving reaction. ‘The nurse is usually the first person to make contact with the relatives and will certainly become their most consistent contact in the hospital’ states Allan (1988). It is important from the time of admission of the patient for a nurse to establish a rapport with the family and inform them of what is being done for their relative. The seriousness of the problem must be emphasised from the start. The better prepared they are, the easier the adjustment to death. This is no time for false hopes or give mixed messages; the family have something real to worry about. Informing the family of the impending death of their relative can be a traumatic experience for all concerned (Farrell, 1988). Wherever possible the relative should not be alone when being told; efforts should be made by nursing staff to contact other family members and friends so that they can comfort each other at this time. The bearer of bad news should, if possible, be the member of staff who has established the closest relationship with the family. As Burgess states (1989): ‘There is no place at this time for the brusque doctor or nurse who presents the facts as a fait accompli.‘The nurse at the bedside is given many oportunities to prepare the way and, for example, may be asked by the family: ‘Nurse, you must have seen this situation before; tell me honestly, is there any hope of my relative recovering?’ At this point the nurse has an opportunity to say, if appropriate, that the situation is not at all hopeful. ‘The seeds of bad news must be sown - it is morally wrong to pretend there is hope when there is not, so this is no time for false reassurance’ (Burgess, 1989). Nurses must be aware of the extent of the family knowledge of their relative’s condition so that new information or reinforcement of exist-
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ing information is given consistently. For example, a nurse should be present when the doctor is informing the family about brainstem death and the probability of death, in case the family members do not fully understand what they are being told and need further explanation later when the doctor has gone. When a person is critically ill or injured to such an extent that brain death is diagnosed (Pallis, 1983), modern medicine and technology can sustain life in a form that few can comprehend, so the concept of brainstem death is difficult for the family to understand and come to terms with, because though the spirit has gone, the body lives on maintained by machinery. Relatives are often left confused and have said to me: ‘But he’s still breathing, still warm; couldn’t he just be in a coma?‘They experience feelings of shock, disbelief, denial and confusion and are unable to accept or comprehend their loss. This is where the nurse can re-explain brainstem death in simple terms. It is important to speak slowly and softly, giving space between words and sentences, so that the family can take in what is said and have the opportunity to ask questions. Peele (1989) suggests that it is good idea for the nurse to prepare for this eventuality by practising: ‘first explaining it to a colleague in order to be more comfortable with the explanation before delivering it to the family.’ Another possibility is for the nurse to record it on tape and play the tape back until speaking about the situation comes more easily and can be done comfortably. An example of how to explain brain death to a family could be: ‘Following the head injury/illness which your relative has sustained, the brain swells and, because it is contained in the skull which is like a rigid box, it becomes compressed and therefore blood cannot get through to the brain; it is starved of the necessary life-giving oxygen, and damage will occur. There is a part of the brain at the base known as the brainstem. It controls breathing, blood pressure, heart rate and level of consciousness. When the brain becomes so swollen that the brainstem is affected the doctors then have to carry out tests to check if the brainstem is still functioning. If it
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is not functioning it means your relative will never regain consciousness, nor be able to breathe nor, eventually, have a heart beat; he will not recover.’ Drawing a picture is often helpful in assisting the family to visualise brain death. A great deal of time and patience will be required to explain this. Once the family understand brainstem death, then is the time to give them the option of organ donation.
Approaching the family about possible organ donation Staff will need to decide, in the light of individual circumstances, who is best qualified to approach the family. It would normally be a senior hospital doctor who has some experience in carrying out personal interviews of a sensitive nature, or the Transplant Coordinator. But it could be the nurse who is the most appropriate person because she/he has developed a solid trusting relationship with the family, and it is her/his role that is explored here. According to Norton (1990) nurses should be comfortable about their own feelings on organ donation before entering into highly sensitive discussions with grieving families, and most nurses ‘feel more secure when they realise that giving these life-saving gifts can help ease survivors’ grief.’ Whether consent to donate is obtained or not is often the result of the manner in which the family was approached (Stoeckle 1990). Families need time to adjust to the pronouncement of brain death before they are offered the option of organ donation (Kozlowski, 1988). Exactly how and when this delicate subject should be broached to relatives is a matter of fine judgement requiring experience and tact; it is never easy. In most units the approach to relatives is made after the first set of brainstem death tests have been carried out and before the second set. The nurse who approaches the family requires certain qualities and skills, and those recommended by Le Poidevin (1987) are: 1. A thorough knowledge and transplantation.
of organ donation A well-informed
2.
3.
4. 5.
6.
nurse can dispel any fear or worries a family may express because of their understandable lack of knowledge. The ability to communicate clearly, accurately and appropriately in a manner that is kind, sensitive, sincere and professional. Skills in non-verbal communication techniques, language choice, common family concerns and a knowledge of the legal implications of organ donation. The ability to establish a rapport with the family and put them at ease. The ability to tolerate the family’s distress without becoming either too detached or too overwhelmed. Emotional maturity. A nurse who can recognise and acknowledge her emotional response to distress is better able to deal with it.
The approach to the subject of organ donation should be made in a positive manner showing sensitivity and a feeling for the relative’s distress, and must convey the belief that it is beneficial. The nurse should bear in mind the legal implications. If the patient has signed a donor card or made his/her wishes known, then there is no legal requirement for the relatives to confirm their lack of objection; but it is good practice to take their views into consideration. If the donor lived closely with someone to whom he was not related, it is advisable to seek the views of that person as well as those of the relatives. It is important for the nurse to take the family away from the critical care area to a quiet and secluded sitting room for any discussion. Organ donation is an emotional private decision and should not be discussed in a waiting room with other visitors present, or near the patient’s bedside where the family will be distracted and cannot concentrate on the subject. It also shows disrespect for the patient as a person to discuss this in front of him. Once in a private setting, the nurse should try to appear relaxed and comfortable. Openness and empathy can be conveyed with relaxed body language such as uncrossed legs and open hands placed in the lap. A nurse’s personal discomfort with the issue may convey disapproval; the information then loses its neces-
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sary objectivity. The role of the nurse is to present information, not to persuade. Therefore a nurse opposed to organ donation should not be involved in requesting it. The nurse’s initial approach should be kept simple and unpressured, for example: ‘1 know this is a difficult time for you and that you have many things to think about, but do you know whether (patient’s name) had considered or discussed organ donation?’ The nurse should take care to avoid words of sympathy which might be perceived as being trite and insincere, for example: ‘I know how you must feel.’ If the family has already discussed organ donation, making the decision will be easier. It may be helpful to explain to relatives that they are being asked to act as agents in expressing what they feel to be the wishes of the patient. As Keogh states (1987a). ‘If it is the patient’s wish that others should benefit in the event of his death, we all share the responsibility of trying to fulfill that wish for the patient.’ Time should be given for the family to discuss the matter amongst themselves privately without interruptions. Some families will be able to give an answer immediately. If they are undecided, it is best to give further time for reflection - perhaps an hour - and then return and raise the subject again and ask for a decision. If they do agree (a witnessed verbal consent is enough), thank them, but do not use misleading language, for example: ‘He will live on in others.’ If they give a firm refusal, graciously respect the decision; if it is an aggressive refusal, apologise for causing distress, but give the reason why the question had to be asked, that is, that a lot of arrangements would have had to be made if a donation were to go ahead. When discussing donation, the nurse should be aware of the family’s potential concern regarding how long the donation procedure will take. This depends on what organs are to be donated. For example, kidney donation is approximately 2-3 h, heart, lung or liver, 6- 10 h. Families often worry about disfigurement of the patient, but they should be assured that all wounds are closed as for any surgical incision, and that there will be no visible signs of disfigurement.
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Some families may have firm religious or personal opposition to the concept of organ donation and this should be respected. For other families the reason for refusing may simply be that they do not know their relative’s wishes and, faced with having to make the decision when the family is already in a state of crisis, find it easier to say no than to agonise over yet another dilemma (Coupe, 1990).
Caring for the family throughout the process of organ donation Caring for and supporting the family begins from the time the patient is admitted. Their intense grief presents the nurse with a formidable challenge. She has to cope with the strong emotions aroused once they have been informed of their loved one’s impending death and, at the same time, she may have to suggest organ donation. At this time, says Burnard (1987), the nurse should not attempt to reassure and calm the family down, but should allow them to experience their feelings fully. All relatives react in different ways and must be treated appropriately. The nurse needs to know all these possible reactions and how to deal with them. For example, an angry reaction should not be taken as a personal affront; the nurse should stay calm and confident and must not retaliate. Similarly, in the case of a relative who becomes hysterical, the nurse should wait for him or her to calm down; eventually the person will become exhausted. It is unhelpful to look shocked or disapproving, but when such distress is over the nurse can offer comfort, and the relatives’ room for privacy and refreshment facilities. Grieving can be assessed by observing behaviour which is characteristic of the common stages of grief. These include denial, anger, bargaining, depression and acceptance, which the nurse should confirm as being normal and expected. Despite the intrusion of life-support machinery, the nurse should do all she can to promote a warm and caring environment where the family can be encouraged to participate in simple nursing tasks. Suggesting to the family that they spend time at the bedside may help them begin to accept the finality of the situation.
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The nurse should call the patient by name, touch him, and care for him or her as she would any other patient. Exposing the patient’s hand encourages the family to touch and talk to him. They may want to give their relative a cuddle, but may be frightened to ask or to do so in view of the ‘drips’ and ‘machinery’ attached to the patient. The nurse should not wait for the family to ask but should interpret the concerns or wishes they may have. Making every effort to be sensitive to the family needs will do much to ease their distress during this traumatic time. Families frequently base false hopes that a patient is getting better on a heart beat or urinary output; this is not helped when they see the ventilatorinduced chest movements and that the patient does not look any different to them. The nurse must be honest with the family, reinforce the concept of brain death, and emphasise that all efforts to sustain life are futile. Families often remember the spirit and manner in which they were cared for by staff. They will feel consoled if they are confident that the nurse did all that was possible to maintain the comfort of their loved one, and their distress and sadness is lessened accordingly. Persuading the family to talk about their loved one, and personahsing his or her life picture, can be important in enabling the nurse to view the patient more comprehensively and will allow her to help the family deal with the dying process in a personal and humane way. The relatives should be encouraged to say goodbye to their loved one after the second set of brain death tests, which is the legal time of death (Pallis 1983; United Kingdom Code of Practice, 1983). If the donor is a child, the parents may wish to hold it, and if at all possible this should be allowed. It may be helpful to suggest to the family that they cut a lock of hair. This is such a simple gesture, yet it is sometimes not thought about at the time; it can often provide much comfort. However, the overwhelming grief of the family must never be forgotten: as a young donor’s mother said of her daughter, ‘Leaving her for the last time, supported by machines but lookingjust like our own sleeping Katie, was the most wrenching experience of our lives’ (Coolican, 1987). The nurse should offer the relatives the
opportunity to visit the body of their loved one in the chapel of rest after donation. Careful arrangement and presentation of the body will allow the relatives to have a physical contact, share some final thoughts with their loved one, and bring home the reality of loss. The nurse should not hesitate to call on the Transplant Coordinator or hospital chaplain to augment her support of the family. The Transplant Coordinator can clarify doubts, answer further questions the family may have, orjust be ‘available’ for them. It is she who makes contact with the family after the patient’s death, giving them information about the recipients if requested, and providing the opportunity for further contact or support. Hospital social workers should be asked to help with families that give special cause for concern. The hospital chaplain or priest is always available and the nurse should acknowledge the importance of spiritual needs at this time, and can initiate and facilitate the meeting of them for the family if required. Very often, despite this help with the hospital, families are offered no professional or voluntary bereavement support afterwards. There are, however, several bereavement support groups available (see Appendix). The nurse should give information about the support groups and, if possible, provide reading material for the family or suggest where it can be obtained. It may be of great help to them in the months to come as they adjust and work through the problems of bereavement.
CONCLUSION Nurses must recognise the important role they have to play in meeting the needs of a family who are faced with brainstem death in a relative and possible organ donation. Failure to meet these needs may lead to an increase in the distress and anxiety which the family members experience, and may complicate their ability to come to terms with their loss. It is essential for nurses who care for these patients and their families to share their knowledge with any inexperienced
staff, thus helping
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them to gain insight and better understanding of the subject. Tentative recommendations have been made here as to how a nurse can deal with members of a brain-dead person’s family. Nurses at student level and in post-registration years should be provided with more of such guidance and advice on the subject. For example: 1. The use of role-play so as to become more aware of personal reactions and to develop skills to cope with the emotional situations which a nurse may be likely to encounter. 2. Encouraging nursing colleges and hospital in-service departments to provide up-todate information and guidance, for example by enlisting the help of the Transplant Coordinator. 3. Inviting professional and/or voluntary bereavement support groups to speak with nurses and share any new supportive methods and techniques of caring. Managing the family in this situation demands a high degree of professionalism, and it is worth remembering that, although the whole concept of brainstem death and organ donation may be distressing for staff who look after these patients and their families, at the same time it can be rewarding; for the fact remains that lives are saved by organ donation, and this should be a powerful source of comfort to all concerned.
Acknowledgements I am grateful for the advice and encouragement given to me in the preparation of this essay by Mrs Annette E. McIntosh, the Module Coordinator. I would also like to thank Miss Frances Smithers, the Transplant Coordinator, for her guidance and for the loan of videotapes and reading material. I am also greatly indebted to Mrs Josephine Crawford for sharing her personal experience of organ donation as the mother of a donor son, which confirmed my ideas and recommendations for the improvement of nurse education on this subject, and for providing me with helpful reading material.
References Allan D 1988 The ethics of brain death. Professional Nurse 3 (8): 295-98 Allan D 1989 Brain death. Nursing Times, 85 (35): 30-32
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Borozny M L 1988 Brain death and critical care nurses. The Canadian Nurse 84 (1): 25-27 Buckley P E 1987 A part to play. Nursing Times 83 (6): 30 Burgess J 1989 Care of the organ donor and the family. In: Monkhouse P M led1 Asoects of Renal Care. 3rd edn. W B Saunders, iondo; 12G.32 Burnard P 1987 Coping with emotion in intensive care nursing. Intensive Care Nursing 3 (4): 157-59 Carbary L 1987 The nurse’s role in obtaining organ donations. Journal of Practical Nursing 37 (1): 41-43 Coolican M B 1987 Katie’s legacy. American Journal of Nursing 87 (4): 483-85 Coupe D 1990 Donation dilemmas. Nursing Times 86 (4): 34-36 Crombie A, Watson B 1987 Donors welcome. Nursing Times 83 (6): 29 Daly K 1982 The diagnosis of brain death: an overview of the neurosurgical nursing responsibilities. Journal of Neurosurgical Nursing 14 (2): 85-89 Farrell M 1989 Dying and bereavement. Intensive Care Nursing 5 (1): 39-45 Hart D 1986 Helping the family of the potential organ donor: crisis intervention and decision making. Journal of Emergency Nursing 12 (4): 2 10-l 2 Houlihan P 1988 The role of health professionals in organ donation. The Canadian Nurse 84 (1): 21-22 Keogh A M 1987a The role of the transplant coordinator. Nursing Times, 83 (9): 48-49 Keogh A M 1987b Transplantation and organ donation. Nursing 16 3 (16): 590-92 Kozlowski L M 1988 Case study in identification and maintenance of an organ donor. Heart and Lung 17 (4): 366-71 Laurent C 1989 A death with a difference. Nursing Times 85 (3): 16-17 Le Poidevin s ‘1987 The management of bereaved relatives and approaching the next of kin about organ donation. Unpublished hand-out from the Psychiatry
Department. London Hospital, Medical College, London Maher M E, Strong S 1989 Organ donation: a nursing perspective. lournal of Neuroscience Nursing, . 21 (6): 357-61 Norton D J 1990 Helping patients give the gift of life RN 53 (12): 30-34 Pallis C l98$ ABC of brainstem death. The British Medical Journal Peele A S 1989 The nurse’s role in promoting the rights of donor families. Nursing Clinics of North America 24 (4); 939-49 Richards J 1987 Coping mechanisms. Nursing Times 83 (8): 43-44 Satterthwaite H J IQ90 The ethics of organ transplantation. Professional Nurse 5 (8): 434-38 Snyder’L A, Peter N K 1989 How to manage organ donation. American Journal of Nursing, 89 (IO): 129698 Sophie L R, Salloway J C, Sorock G, Volek P, Merkel F K 1983 Intensive care nurses’ perceptions of cadaver organ procurement. Heart and Lung 12 (3): 261-67 Stark 1 L, Reiley P, Oseicki A, Cook L 1984 Attitudes affecting organ donation in the intensive care unit. Heart and Lung 13 (4): 400-04 Stoeckle M L 1996 Attitudes of critical care nurses
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toward organ donation. Dimensions of Critical Care Nursing, g(6): 354-61 Whittaker M 1990 Beaueath. burv or burn. Nursina‘3 Times 86 (40): 34-35 ’ Wight C 1987 Concerns of the family. Nursing times 83 (13): 53 Williams L I985 Organ procurement: what nurses need to know. Critical Care Quarterly 8 (1): 27-30
Further reading Cathcart F 1989 Coping with distress. Nursing Times 85 (43): 33-35 . Crandall B C 1987 Identifying dilemmas in caring for brain dead orean donors in the OR. AORN tilournal 45 (5): 943-4; Core S M, Hinds C J, Rutherford A J 1989 Organ donation from intensive care units in England. British Medical Journal 299: 1193-97 Health Departments of Great Britain and Northern Ireland 1983 Cadaveric organs for transplantation: A code of practice including the diagnosis of brain death. Drawn up and rev&ed by a-working Party on behalf of the Health Deoartments of G-eat Britain and Northern Ireland ’ Hopkins T K 1990 A different kind of recovery. RN 53 (12): 35-36 Kennedy A 1989 Giving concern. Nursing Times 85 (35): 33 Lamb D 1990 Organ transplants and ethics. Routledge, London Murphy Pat 1986 When a non-death death occurs. Nursing 86 16 (7): 34-39 Nicklin P 1987 Attitudes towards death and dying among nurses and doctors. Nursing Times 83 (44): 58 Simpson A 1987 Brainstem death. Nursing Times 83 (8): 41-42 Worden J W 1983 Grief counselling and grief therapy. Tavistock Publications, London Wright A, Cousins I, Upward1 1988 Matters of death and life: a study of bereavement support in NHS hospitals in England. KF Project Paper. Kings Fund Publishing Office, London
Videotapes Transplant Equations. London Scientific Films Ltd, 57-59 Rochester Place, London, NW I 9JU The Right to Choose. London Scientific Films Ltd., 57-59 Rochester Place, London, NW1 9IU Life from Death. Prepared from the Department of Health and Central Office of Information. UK. January 1990
Appendix Bereavement
Support Groups
British Organ Donor Society (BODY) This is a volunatry organisation whose members come from families who have been accidentally brought together by organ transplantation. Most of the members are donor or recipient families, but there is now an increasing number of waiting transplant families making contact and getting support from BODY. The Society is run by John and Margaret Evans, who are the parents of a donor son. From personal experience they and other involved families can give support to donor, recipient and waiting families. Further information can be obtained by contacting the following address or phone number: BODY, Balsham, Cambridge, CBI 6DL. Tel: (0223) 893636
The Compassionate
Friends
This is an international organisation of bereaved parents offering friendship and understanding to other bereaved parents. It offers no miracle cure, but comfort and the consolation that in time, after the pain and turmoil, life will come to have some meaning once more. Further information and leaflets can be obtained from: The Compassionate Friends, National Secretary, 6 DenmarkStreet, Bristol, BSl 5DQTel: (0272) 292778
Cruse - Bereavement
Care
CRUSE was founded in 1959 and offers to help all bereaved people wherever they live. It gives this help through links with RUSE Headquarters or through contact with a local Branch. It includes counselling; someone to share things with: advice and information on practical matters; and opportunties for contact with others. It is personal and confidential help. Branches run courses for volunteer counsellors to work with CRUSE and for all interested in bereavement. For further
local information,
contact:
CRLJSE Bereavement Care, Scottish Office, 24a Barony Street, Edinburgh, EH3 6NY. Tel: (031) 557 8191
