One is not really surprised that most clinicians . . . have not pursued the study of handling death as diligently as they have pursued the treatment of the diseases which cause it.Vernick and Karon 1965

Death and bereavement are an integral part of human life and the care of those who grieve is an important part of clinical practice. Regardless of culture, bereavement is a stressful experience which can lead to physical and psychological morbidity. Lazare estimates that 10 to 15 per cent of the patients attending the mental health clinic at the Massachusetts General Hospital have an unresolved grief reaction underlying their medical condition.

The way in which relatives are informed of a death and the way in which they are supported in the initial stages of grief can have a lasting influence on later adjustment. The purpose of this section is to outline grief patterns, to discuss techniques for ‘giving bad news’ and to suggest strategies for supporting the bereaved which clinicians may use to promote a healthy grief reaction, thus preventing some of the damaging consequences of bereavement.

Medical staff receive little training in this area of their work. However, with a knowledge of grief patterns and appropriate communication skills staff can feel more at ease with the situation and offer empathetic and understanding care, thereby reducing the risk of unresolved grief.

Grief is generally described as a psychological process by which people fill the gap in their lives after a large part of their world has been lost. This process has various emotional phases and may continue for several years before acceptance and necessary adaption are achieved. Engel describes this process as ‘grief work’: the work of mourning by which we can become emancipated from bondage to the deceased, readjust to the environment in which the deceased is missing, and begin to form new relationships.

Overall patterns in the process of grieving have been identified. Most writers outline three phases within normal grieving: an immediate phase with shock, disbelief, and denial; an intermediary phase with a growing awareness accompanied by anger, anxiety, and depression, and the final phase of resolution, acceptance, and healing.

This phase of stunned numbness is described by a bereaved relative in Speck's book as ‘a cotton wool time when there seems to be an invisible blanket between you and the world’.

Such numbness is obviously increased in cases of sudden death where there has been no preparation for the terrible news and no possibility of anticipatory grieving. Disbelief and denial may last for hours, days, or weeks and may damage and impede the exchange of information and all forms of communication.

The gradual awareness of the reality of the situation is often accompanied by anger and anxiety. Such anger may be directed towards God, the deceased, members of the caring professions, or it may be internalized and used inwardly against the bereaved themselves. Internalized anger is often linked with feelings of guilt and is most apparent following sudden or traumatic death or the death of a child.

Yearning and searching for the deceased may also occur and is accompanied by feelings of emptiness and loneliness. Sadness, apathy, and exhaustion gradually develop and may continue for many months.

The final stage of resolution is demonstrated by readjustment and life restructure; readjustment is usually achieved by the time of the second anniversary of the death.

Grief reactions vary, depending upon individual personality and aspects of the death such as preparation and anticipatory grieving and the bereaved's relationship with, and attachment to the deceased.

The needs of the relatives during the ‘crisis’ time when the patient is critically ill have been investigated. Molter reported that the five most important needs were: to feel that there was hope; to feel that the hospital staff cared about the patient; to know the prognosis; to have questions answered honestly; and to be near the patient.

It may be difficult to meet all these needs, but communicating with the family at regular intervals and giving them honest information will help them through the distressing phase when they alternate between hope for recovery and fear of death.

The family need to know the truth of the situation. Truth in itself is not damaging but its presentation must be carefully planned. Blandy notes that one should ‘Temper the wind to the shorn lamb. Dilute frankness with gentleness and wherever possible offer hope.’ Relatives need the facts about the clinical condition and a realistic prognosis with its implications for them as a family. Truth may not be the information that they are hoping for, but it allows them to take control and to select options and make decisions. Staff should strive at this time to develop a rapport with relatives so that trust is established allowing them to inform, support, and offer choices.

Support, comfort, and cultural and religious needs

Relatives in a crisis situation require continual support. A relative who is alone should be comforted by an empathetic carer until another family member, friend, or acceptable person can come and support them. While waiting, relatives should be kept as comfortable as possible, preferably in a suitably furnished private room near to telephone and toilet facilities. They should be offered refreshments and allowed to smoke.

The family should be allowed to sit with the patient as soon as possible and should be encouraged to help with appropriate aspects of care.

Staff must be aware of cultural differences and religious beliefs; interpreters and religious advisers should be contacted to add comfort and assist in communication.

When communicating with the family it is helpful to use two people: an informer and a supporter. The clinician is often the informer; the supporter is often a nurse, a religious adviser, or another member of the caring team. The roles of the informer and the supporter should be kept separate. The family may blame or reject the informer; should this happen, the supporter can offer physical comfort, repeat information, and offer further support. It is important that the informer does not take such rejection personally. The family is not rejecting them but the message that they have given.

Before communicating with the family it is important for the informer to prepare himself/herself, both physically and mentally. Evidence of trauma such as bloodstains must be removed, as should other barriers which will impede communication (for example surgical masks).

The informer should also familiarize himself/herself with the family situation, noting the names of the principal relatives and their relationship with the patient. If there is a large group of relatives it is helpful to speak directly to the immediate next of kin, using first names as appropriate.

Meetings with the relatives should be planned so that there is time for discussion. They should take place in a private relatives' room where the family can express their thoughts and feelings freely.

Upon meeting the family the informer and supporter should introduce themselves, shake hands with the relatives and sit near to them. It is important to maintain a calm, unhurried approach and to offer them the time to ask questions; never hover in the doorway as if ready to make a hasty exit.

Non-verbal cues indicating the gravity of the situation should be used so that the relatives receive some preparation for the information. Facial expressions should be serious, as should the tone of voice. Speak to them in non-technical language and give information slowly, gradually sowing the seeds of the seriousness of the situation. Look them in the eye and speak softly, with spaces in between words and sentences. Never try to overprotect people from unpleasant reality: if there is a possibility of death, it is essential to inform them and help them to prepare. Staff must also be sensitive to relatives' needs and use physical comfort as appropriate, such as holding a hand or placing a comforting arm on their shoulder.

Relatives may try to minimize the seriousness of the situation by misinterpreting information or by only hearing certain parts of the message. Shock and disbelief can block communication and impede understanding; the informer should invite questions in order to find out what has been understood and should then clarify and repeat again. Relatives may also confront different staff members with the same questions about the patient's status hoping for a more positive message. It is necessary to maintain good communication between team members so that the same information is given by all.

The family must be encouraged to express their thoughts and feelings. Staff should not tell them how to feel (for example ‘do not upset yourself’); they have something very real to be upset about. It helps at this time to encourage them to talk about themselves and their families: insight gained into their world and their feelings can result in greater empathy and understanding from the carers.

The supporter should arrange further meetings to give the family progress reports while also attempting to resolve any practical problems that arise for them.

In most cases relatives will wish to be at the bedside at the time of death and staff should strive to fulfil this wish, offering them privacy. If it is not possible for the family to be at the bedside a member of staff who has been in continual contact with the relatives during the ‘crisis’ time should ideally be the person to inform them of death. Again, the information should be given in a private area by an informer with a supporter present.

Buckman suggests that the death of a patient may cause clinicians to experience ill-founded feelings of failure, anger, and guilt at not being able to save the life. It is essential that such feelings are recognized, discussed with colleagues, and resolved before the meeting with the family. If these emotions persist they may make the informer defensive and will hinder empathetic communication.

All members of staff will approach this task with trepidation at the thought of giving the message, and with feelings of helplessness at the thought of trying to ameliorate the relatives' suffering. There are no ‘correct’ words to use at this time, but it is important to give maximum preparation to the family with a warning of bad news before the actual verbal message: ‘I am afraid that I have bad news for you’—pause—if possible get the relative to say ‘Do you mean that he/she is dead?’. If this response is not forthcoming proceed with ‘We did all that we could to save your wife/husband’ (use the first name if possible)—pause— ‘but I am afraid that he/she has died’. The words ‘has died’ or ‘is dead’ should be used rather than other ambiguous phrases such as ‘passed on’ or ‘left us’ as these can be misconstrued.

Once the verbal message has been given the carers should anticipate and be prepared for a variety of emotional reactions. Men and women often have different ways of expressing grief. Men tend to find relief in rage and anger early on, and retire to brood alone; women often need to talk endlessly about the deceased. When everyone within a family circle is devastated they are likely to find it particularly difficult to help one another.

Anger is a frequent reaction to intense feeling and an expression of grief. In order to express such anger the relative may shout, rush about the room, kick and punch the air, the wall, or the furniture. It is important not to do anything to increase this anger. Do not attempt to restrain the relative and do not become defensive and enter into an argument. The best response is to remain calm and to wait for the anger to subside. Staff should show no criticism of this response but should offer support and care.

Regardless of how distressed the relative may be it is important to remember that the outburst will cease after a short time. It is best to remain quiet and calm, and to sit and wait for the hysteria to abate. It is important not to appear judgemental, shocked, or disapproving, but to accept that this is simply another expression of grief. Physical contact and comfort should be offered as the hysteria subsides.

Isolation and withdrawal produce perhaps the strongest feelings of helplessness in the carers. It is impossible to communicate adequately or to know how the bereaved relative is thinking and feeling. Bereaved fathers find it particularly difficult to discuss or share their grief, but it is possible to offer a silent yet caring ‘presence’ in this situation. Eventually, it may become acceptable to ask gentle questions to establish a rapport and thus elicit a response. It is more helpful to the bereaved to be drawn out and to express reactions rather than to continue suppressing their feelings. The earlier the expression of grief, the healthier the outcome.

Once the initial reaction has subsided it is important to answer questions that the family may have and to offer them support in the tasks that lie ahead. Never try to console them with platitudes or tell them ‘that you know how they feel’. Grief and its pain is unique to each individual and it is impossible to feel as another does in such a situation. Simple expressions, such as ‘I am very sorry’, bring the most comfort at this time and if spoken with warmth and understanding they impart more than eloquent words or false statements. The family will also gain comfort from the knowledge that the death was peaceful or pain free, and that the deceased was not alone.

Sudden or traumatic death robs the family of preparatory grieving, and therefore breaking bad news in such situations requires extreme sympathy and understanding. It is of value to have skilled counselling available to families at the immediate time of the crisis and thereafter. Psychological morbidity can be reduced with early counselling, particularly for relatives who have no supportive social networks or who are unable to support each other.

Following sudden loss it is likely that the family will have many more questions that will need to be answered with honesty and understanding, as they will be striving to make some sense of meaning from the death. Again, it is comforting if they can be assured that the deceased ‘knew nothing’ of the onslaught and thus felt no pain.

Many relatives benefit from a further meeting with the clinician at a later stage so that unanswered questions may be raised and discussed when the numbness and shock have passed.

One of the most difficult deaths to understand and accept is the situation where the patient has suffered a major brain insult and is subsequently found to be brain-stem dead.

In the case of brain-stem death it is especially important to consider the content and the timing of the information to be given to the family. In this situation, the relatives have to understand and accept a new concept of death. Traditional acceptable images of death involve a lifeless body that is cold and asystolic. However, brain-stem death presents an image of life in a setting of high technology and hope where the victim is warm and has a heart beat and is breathing, albeit on a machine. Thus, the situation and setting suggest life and hope to the family, in sharp contrast to the message of death that is given to them by the clinician.

The same preparations and procedures for information giving should apply as mentioned earlier using a dual approach. It is essential that the informer and supporter both understand and accept the brain-stem death concept themselves and that they use language that the family can understand. Any hesitation or fudging of the explanation will confuse the relatives and may introduce hope that recovery is possible. The message to be given to them must stress that irreparable damage to the brain has occurred and that there is no hope of recovery; furthermore that death of the brain-stem is evident and death of the brain-stem is death of the person!

The family must be allowed time to assimilate and accept this information. The central facts may need to be repeated at several meetings before the relatives can understand the diagnosis and its implications.

Brain-stem death offers the family an option of hope and life for others through organ donation. Corneal donation can and should be discussed with families following asystolic death, but multiple organ donation can only be offered following brain-stem death.

Recent reports suggest that many clinicians are reluctant to introduce the option of donation because they fear that such a suggestion may increase the grief of the bereaved. However, families gain enormous comfort from the knowledge that their tragedy has resulted in life for others. Offering the choice to donate, if performed with empathy, will not increase their distress and can give something positive in an otherwise negative situation. The bereaved should not be denied this chance of comfort.

It is damaging to approach the family too early as trust may be lost; conversely, it is damaging to approach them at the last minute as there may not be sufficient time for them to discuss the idea and make a decision. The most appropriate time to offer donation is after the first set of brain-stem death tests have been confirmed and the family has assimilated and accepted the brain death concept.

There is no one person who is ideal to approach the family because of the enormous variety of individuals and situations. It is most appropriate for the person who has formed a close and trusting relationship with them to introduce the option of donation. It is essential that this person has a positive commitment to donation themselves and introduces donation in a positive way.

Staff are often reluctant to raise the question of donation because they fear that they may increase the families distress by saying ‘the wrong thing’. However, there are no ‘right’ words: each situation is unique and families will have their own individual responses. Request for organ donation can never be preplanned, although anxiety can be reduced for the person making the request if suitable phrases are considered prior to meeting with the family.

FamilyHow could this happen? What a terrible waste of a young life.ResponseThis is a terrible time for you but it need not be a complete waste; John's death could bring hope to others.FamilyHe was a lovely man, he didn't deserve to die.ResponseHe sounds like a lovely man, do you think his generosity would extend to helping others through his death?

Families will respond to the option of donation in a variety of ways: whatever the response, the carer should show empathy and understanding. Some families require time to consider their response and should be offered privacy. Many relatives have additional questions concerning the process of donation and its implications.

At this time it may be helpful for them to meet with a member of the transplant team, usually the transplant co-ordinator, who can answer specific questions and start to develop a rapport with them. The family will require reassurance that their loved one will be treated with dignity and respect throughout the donor surgery; that the body will not be mutilated or grossly disfigured; that the surgical wound will be sutured; that they can view the body after surgery and that the funeral will not be delayed. The transplant co-ordinator will work closely with other health care professionals to answer further questions and to facilitate the wishes of the family.

Many relatives will wish to spend time alone with their loved one so that they might say goodbye before the scheduled time of theatre. The opportunity to touch or kiss is especially appreciated: they should be offered privacy and never hurried. Brief information concerning the transplant recipients can be given to the family; many state that this information is a great source of comfort.

‘Seeing is believing’, and all families should be offered the opportunity to view the patient after death. If they are reluctant then they should be gently encouraged, as it is an important step in accepting the reality of the situation. The body should be carefully prepared and the bereaved given privacy and permission to touch, hold, and kiss as desired. The loss of a young child is particularly distressing and parents may appreciate a lock of hair or a photograph.

Before the family return home it is important that they are aware of follow-up arrangements. In most cases this will involve an appointment with the bereavement officer, who will offer help and information concerning the tasks that lie ahead. In some cases it may also be appropriate to arrange a further meeting with medical staff so that additional questions may be answered.

Advice concerning expected grief reactions may also be helpful: relatives can be overwhelmed by the enormity and intensity of their distress. It is important that local support is available and the clinician should alert the family doctor or another support person to the needs of the bereaved. Some relatives may request medication, but in most cases the request should be gently denied as sedation dulls reality and response and inhibits the commencement of grief.

The majority of families recover from the death through the normal stages of grief. If a family member does experience specific problems further help should be offered. Details of local bereavement organizations which can offer practical advice and experienced counselling should be made available.

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