Breaking the news: informing visitors that a patient has died

Breaking the news: informing visitors that a patient has died Ian D. Dyer

Most nurses working in critical care areas for any length of time will be involved in informing visitors that a patient has died. This paper describes some of the methods which may be used to give this news and some of the means of providing support to visitors at this time.

INTRODUCTION Patient death occurs more frequently in critical care areas than on most general wards and many ITU nurses will, at some time, be faced with the task of informing visitors that a patient has died. This is never easy and can be a major source of stress for nursing staff (Burnard 1987, Hay & Oken 1972). This stress may be increased by the uncertainty of many members of staff in dealing with the newly bereaved. Obviously this situation is always going to be an unpleasant one for visitors, but skilled nursing intervention can make the situation less awful than would otherwise be the case. This paper reviews some of the literature in this area and makes some suggestions on the support of visitors based on the literature and on the experience of the author. The aim of the paper is not to suggest a ‘right’ and ‘wrong’ way of supporting visitors or to provide a formula to be used in these circumstances. There is no right and wrong in this situation, visitors must be treated as individuals.

Instead the paper aims to describe some of the approaches which nurses may find helpful at this time. This topic is only one aspect of the vast subject of communication and support for visitors both before and after the death of a patient. For wider reading on this subject see Ashworth (1980, 1981), Bond (1982), Clarke (1981), Dyer (1991), Leys (1988) and You11 (1989). In this paper the word visitor is used throughout. Most work in this area uses the word ‘relatives’. It is important to remember that relatives are not the only people affected by the illness or death of a patient. Many people are affected and they are all in need of support. A more comprehensive term is ‘significant others’ since this includes not only relatives but also friends. However, this phrase is rather a clumsy one for everyday use so in this paper the word visitors is used to describe all of those affected by the death of a patient. For elaboration of this see ‘Who should be told’ (below).

PREPARING VISITORS Ian D. m PhD, MSc, Dip N, RGN, Senior Charge Nurse/Clinical Nurse Specialist, Cardiothoracic Intensive Therapy Unit, Queen Elizabeth Hospital, Edgbaston, Birmingham, 815 2TH, UK (Requests for offprints to ID) Manuscript

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accepted 6 November

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Hopefully, all nurses would all agree that visitors should be regularly provided with honest information. This information aims to perform three functions:

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1. To ensure that visitors are fully informed of the patient’s condition and prognosis. 2. To give visitors the opportunity to discuss anxieties and fears associated with the illness of the patient. 3. To assist in the development of a bond of trust between hospital staff and visitors. This bond can increase the amount of support which staff can provide and is particularly important at times of extreme stress. The development of this bond can be encouraged by ensuring that the same few nurses are involved in the care of each patient and his/her visitors.

Problems with communication Communication with visitors is frequently diffcult, partly because people may not take in information readily (especially when the news is bad), and partly due to the language used. Most members of the public are not fluent in ‘medicspeak’ and this may prove a major barrier to communication. It is essential when visitors are spoken to that their understanding is checked, and that information is repeated frequently. Doctors, in particular, are reputed to be bad at communicating with visitors, and though this stigma is in many cases undeserved, it is helpful if a nurse is present when visitors are seen. The nurse can record the information provided, reiterate this if required and, where necessary, translate this information from ‘medical’ into English. This is particularly important for visitors whose first language is not English, since these visitors may be unfamiliar with even commonplace medical terms. If necessary an interpreter should be involved. (Most hospitals maintain a register of interpreters.) When the prognosis is poor, one of the aims of information provision is to prepare visitors for the possible death of the patient. Certainly, when the outlook is bleak it is essential that visitors are informed of this and hospital staff should take pains to avoid undue optimism. Though studies of visitor needs show that an important need is to feel hope this should not be provided at the expense of truthfulness. If the prognosis is poor

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then visitors have a right to know this. This said, in many cases, however pessimistic the news, and however poor the prognosis, death is almost always unexpected and it is very seldom that visitors can be fully prepared for this possibility. This does not obviate the need for honest communication and, at the very least, if visitors have been fully informed it is easier for staff to build on the information provided. As noted above, when visitors are seen any information provided should be recorded. A useful place to do this is in the nursing process documentation. If we are serious in our attempts to provide holistic care then an essential aspect of this care is the provision of support and information to visitors. At the author’s place of work, space is provided in the nursing process documentation to record communication with visitors. The information recorded includes: the visitor seen, date seen and by whom, the information provided and where relevant, the responses of visitors to this. The aim of this is to ensure that information provided is both comprehensive and consistent (Dyer 1991).

Involving visitors in care prior to the death A major mean of providing support for visitors is to allow and encourage them to assist in patient care (Dyer 1991). When the patient’s death is expected visitors may be present at the bedside. If at all possible visitors should be allowed to assist in care at this time - washing the face, turning pillows, etc. This transforms them from bystanders awaiting the death to comforters who made the death as peaceful as possible. If visitors are present, remember to switch off monitor alarms when a patient’s death is expected and resuscitation procedures are not planned. A cacophony of noise when the patient dies is both unnecessary and intrusive.

The role of the chaplain It is often helpful to involve hospital chaplains early on (see Craig et al 1986). People who have religious beliefs are often greatly helped by the

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support which chaplains can provide and spiritual needs may become more important to visitors at this time. Chaplains also have a major contribution to offer to people who are not conventionally ‘religious’ and may be helpful even if the chaplain and the visitors are of different faiths. This said, some individuals and religious groups may only wish to meet with chaplains of their own faith and it is worthwhile asking visitors if they would like nursing staff to contact a minister or priest of a particular faith. The chaplain can provide a sympathetic ear and, as someone who is not directly involved in patient care, can be very helpful in allowing visitors to voice fears and concerns which they do not feel able to express to doctors and nurses. Additionally, as Ashworth (1990) notes, the time of skilled and experienced staff is often a scarce resource. Chaplains may be able to devote the required time to visitors when medical and nursing staff are too involved in direct patient care to give the necessary time to support visitors (see also Thompson 1990). Early involvement of the chaplain may also enhance the degree of support which the chaplain can provide should the patient die. For this reason it is important that nurses build up a good relationship with hospital chaplaincy staff so that appropriate referrals can be made. A final point to bear in mind is that outside clergy are not automatically skilled at dealing with the bereaved in a hospital context and we should not assume that clergy can always provide adequate support (Hackett 1976). If clergy are unwilling, or uncertain in dealing with the bereaved then they should not be forced into this role simply because it is ‘part of their job.

WHO SHOULD INFORM VISITORS? Conventionally doctors have been the main providers of information to visitors. This does not mean that doctors are automatically the most appropriate people to inform visitors that a patient has died. The ‘best’ person to inform visitors is an individual who has formed a relationship with the family and friends, whom they trust and who is willing to carry out the task. No

one should be forced to inform visitors if they feel unable to do so and someone who is very emotionally involved may not be the best person to provide this information. There is nothing wrong with showing emotion and shedding tears, but it must be remembered that part of the nurse’s role is to provide support to visitors rather than be supported by them. It is important that staff dealing with the bereaved are aware of the events leading up to the death. If necessary, (for example, if you were not present when the patient died) it is worth taking a few minutes to familiarise yourself with what happened so that you can provide answers to questions which visitors may ask. In some circumstances the chaplain may be the best person to inform visitors, but at some stage most visitors ask ‘medical’ questions which the chaplain may be unable to deal with. Thus, it is usually helpful if a nurse or doctor is present at this time.

WHO SHOULD BE TOLD? On first consideration the answer to this question is obvious, it is the next of kin. Legally this may be the case, but as nurses we are concerned not only with legality but also with care and compassion. The next of kin is not the only person affected by the patient’s death. It should be remembered that though the official next of kin may be legally closest to the patient others may be emotionally closer. For example, the patient may have a common law partner. Though this relationship is widely recognised, the patient may have listed a (possibly distant) blood relative as next of kin. A degree of sensitivity and consideration is required to ensure that we recognise the importance of less formal relationships. This, of course, also applies to information provision whilst the patient is alive. We should also remember that not all patients are heterosexual. Someone who we perceive as ‘just a friend’ may be the longterm partner of a lesbian or homosexual patient and this partner will require at least as much support as we offer to a more conventional partner (see Oerlemans-Bunn 1988). A further point worth considering is that those

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who are close to the patient may find it very difficult to inform the rest of the family and friends of the patient’s death. It is often helpful to offer to inform other relatives or friends, either in person if they are coming to the hospital, or by phone. This offer may not be taken up, but it may remove a burden from the family at a time when they already have enough to cope with. Providing this service also gives other visitors the chance to come to the hospital both to provide support to visitors already present and to make their farewells to the patient. If visitors who are present wish to inform others of the death a private phone should be place at their disposal. It is difficult to think of anything more likely to increase distress than expecting visitors to impart this news on a public phone in a busy corridor. We would never consider informing people under these conditions and we should not expect visitors to do so.

WHERE TO TELL Wherever possible, visitors should be taken to a quiet, private room. It is worth checking the room which you plan to use in advance to ensure that it is clean, tidy and unoccupied. Places which should not be used, if at all possible, are crowded waiting rooms and corridors. This may be a problem if a visitor comes to the Intensive Therapy Unit (ITU) door and asks directly ‘is he/she dead?’ Under these circumstances it is probably better to be honest and not delay giving the news, but if at all possible visitors should be informed in private so that they are able to ‘express their grief without feeling that they are in front of an audience.

HOW TO GIVE THE NEWS There is no ‘right’ or ‘wrong’ way of breaking the news of a patient’s death. Approaches will differ for every family and will be influenced by the relationship of the family to the deceased, how well you know the visitors, whether the death was expected or not, whether the visitors were with the patient at the death, and so on.

Collins (1989) recommends that in the event of death in an accident, staff should proceed in the following way: 1. Lead the family to a quiet and private room. 2. Introduce yourself to the family. 3. Bond with the family sitting close to them maintaining eye contact, while talking and touching the family members on the knee, shoulder, arm or hand. 4. Inform them of the time and place of the accident. 5. Explain the resuscitation attempts in the field. 6. Describe the resuscitation continued in the hospita!. 7. Inform the family of the injuries received. 8. Inform them of the condition. 9. Inform them of the response to treatment. 10. Inform them of the death - use the word dead or died. 11. Give the family time to ask questions. Presumably the aim of this approach is to gradually lead the family to the realisation of the death. On paper the approach looks reasonable but in practice it is anything but. It conjures up a picture of the nurse dashing around touching the family whilst at the same time not telling them why this is being done. This can only serve to increase the stress suffered by visitors. Instead it is better to immediately say something like ‘I’m afraid that I have some bad news, I’m sorry to have to tell you that John has just died’. It is sometimes suggested that using the word ‘sorry’ is not appropriate and that this is used simply to ease the burden on the nurse rather than from a genuine sense of sorrow. Even if this is the case it is not inappropriate to express sorrow if this makes informing visitors easier for you. The situation is a very difficult one for hospital staff and anything that makes the situation easier for the nurse or doctor and does not increase the distress of the visitors is perfectly acceptable. It is also sometimes suggested (e.g. see Collins 1989 above) that it is important to use the words ‘dead’ or ‘died’ rather than a euphemism. However, in

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the experience of the author other phrases such as ‘passed away’ or ‘passed on’ are perfectly well understood, and if you find it easier to use an alternative phrase then by all means do so. The only exception to this is when visitors do not speak English well and then to be clear it may be better to use the word died. After this information has been imparted there is no need to say anything further for a few minutes, though if visitors ask questions you should, of course, reply to these. Physical contact may be helpful, for example an arm around the shoulder, but bear in mind that not all people will welcome this. Quite often visitors will hold each other. If they do so then do not get in the way of this - family members are likely to be able to comfort each other far better than you can. If possible, it is helpful to arrange the room to be used in advance so that visitors are able to sit close together. Making a cup of tea may be helpful. This is sometimes sneered at as the ‘universal panacea’ but it gives you and the visitors some physical activity to focus on. It should be remembered that this is a very stressful time for the nurse. If performing some task such as making tea reduces the stress for the nurse and does not act to the detriment of the visitors then it is perfectly acceptable. It is often tempting to inform visitors that the patient has died and immediately ask ‘do you have any questions ?’ This response may be used by staff as a means of dealing with their feelings of inadequacy at this time - it allows staff to feel that they are ‘doing something’. It is important to differentiate between the provision of the information that the patient has died and the provision of information about the events leading up to the death. Visitors need some time to come to terms with the actuality of the death before they are able to take in factual information. Remaining silent is very difficult but is often the best action at this time. Eventually visitors usually begin to ask questions. It is here that the information described above by Collins (1989) should be discussed. It is important that information is honest and complete. People tend to seek information to make some sort of sense of the situation, and any

information which you can provide can help this process. For spiritually inclined visitors prayer may be helpful. If you have no religious beliefs then this may be difficult for you but you can always offer to contact the patient’s clergy or the hospital chaplain not only to comfort the bereaved but also to carry out any rites for the patient. People of differing religious groups have different rituals and needs both before and after death. When in doubt consult the hospital chaplain who should be able to advise you and if appropriate put you in touch with the relevant spiritual leaders (see also Green 1989, Neuberger 1987). Some visitors may appreciate being left alone for a few minutes. If it becomes clear that your presence is not needed then it is worth leaving the visitors alone, telling them that you will be nearby and that you will return in a short while. Finally, beware of offering platitudes - ‘you’ll feel better one day’, etc. These don’t offer comfort and may increase distress. One exception to this is the assurance that the patient did not suffer or that suffering was minimised. The fact that the patient was free of pain is frequently a source of comfort. This reassurance should, of course, be genuine. Even if we can offer nothing else to a dying patient we can ensure that they do not experience

pain in their final hours.

Giving information

by telephone

In theory, telling people of a death by phone should be easier than telling them in person since the contact with visitors is less direct. In reality this is often more difficult and whenever possible visitors should be told in person. In most cases close visitors will wish to know that the condition of the patient has deteriorated, and if there is any concern about the condition of the patient it is helpful to ask visitors if they would like to be telephoned if the situation deteriorates. It is sometimes suggested that when people are telephoned they should not be told of a death if they are alone. The implication of this suggestion is that if you phone someone and find that they are alone then you say ‘I was going to give you some bad news, but as you’re on your

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own I won’t bother!’ Once you have contacted the visitor you must tell them the news. What you can do after informing the visitor of the patients death is to offer to phone someone living nearby, for example a relative or friend, or the visitor’s GP or clergy. One thing which should never be done is lying - telling people that the patient’s condition has deteriorated when, in fact, the patient has died. Relatives should always be treated with honesty. If appropriate you should suggest that the relatives could visit the hospital either immediately or the following day and that you and/or the relevant doctor would be available to spend some time with them.

Reactions of visitors A wide range of emotional reaction may be expected from visitors (see Kubler-Ross 1982, Epperson 1977, Parkes 1986). Visitors may cry or become hysterical though often the response is one of numb acceptance. Occasionally the reaction may be relief, particularly if the illness has been a long one - ‘thank goodness his suffering is over’. It is not unusual for visitors to respond with anger. This may be directed at hospital staff for ‘failing’ to save the patient, or even at the patient ‘why did he/she leave me?‘. Guilt is another common response - ‘if only I’d persuaded him to go to the doctor sooner’, ‘why did I persuade him to have the operation?‘, ‘if we hadn’t had a row the accident would never have happened’, etc. In the time before the death denial and bargaining are common - visitors refuse to believe that the patient is ill, seek second opinions by asking different staff the same questions in the hope of eventually getting better news, or offering to perform some penance - for example going to church or giving to charity, in the hope that this will result in a ‘good’ outcome. These responses may also persist after the death and it is here that viewing the body can help to bring home the reality of the situation and allow the grieving process to start (see below). It should be remembered that all of those present may not react in the same way and the situation may become acrimonious, for example ‘why did you make him have the operation when

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I didn’t want him to?’ It is important that the nurse does not get involved in a dispute even if anger is directed at him or her. You should always remain calm. Often the best response is to remain quiet and let these emotions run their course. if intervention is necessary then reflective responses can be useful; ‘why do you say that?‘, ‘what do you mean?‘, etc. Occasionally factual statements may be helpful, for example about the necessity of the operation or the events leading up to the death. Very rarely staff or other visitors may be attacked physically, but this seldom has a serious intent. If this does occur it may be appropriate to leave the room taking any other victims of the attack with you. If you return a few minutes later things have usually calmed down. If the attack continues then another member of staff should take over. Sometimes sedation of visitors is suggested. In the experience of the author few people ask for sedation for themselves, it is usually suggested by other family members or by staff who find emotion difficult to deal with, i.e. the visitor should be sedated to treat someone else’s anxiety. With rare exceptions sedation is inappropriate - it will simply prolong the period of numbness and delay acceptance of the loss.

VIEWING THE DECEASED When visitors have not been present at the death, viewing the body can often help to reinforce the reality of the death and also provides an opportunity to say goodbye. The opportunity should always be offered but visitors should not be given the impression that this is something which they have to do. Visitors should be informed that they will be able to see the body at a later date in the hospital chapel or the undertakers if they wish to do so. When you offer this opportunity you should never say ‘would you like to see the body?‘, but instead something like ‘would you like to say goodbye to John?’ The patient is still a person not an object. Collins ( 1989) suggests that equipment should be left in place to show that no effort was spared to save the patient. She rightly points out that visitors are not shocked by the equipment - they

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are shocked at the death. This approach may be relevant in the USA where the fear of litigation seems to motivate much of medical care but is probably not necessary or appropriate in the UK. At the author’s place of work equipment is removed whenever possible. The aim of this is to show the patient as someone who is finally at peace. The patient should be washed, false teeth and other prostheses put in place, and dressed in clean nightclothes. Clean linen should be put on the bed and, if available, flowers placed nearby (dried or silk flowers can be kept for this purpose). The patients hands and arms should be left exposed to allow visitors to hold hands with the patient. Any cuts, grazes and wounds should be covered with clean dressings. If the patient is disfigured in any way then visitors should be warned about this. If the patient has been involved in an accident that has resulted in severe facial trauma then a great deal of support may be required. To prepare visitors, explanation should be given about the extent of the injuries but they should never be prevented from seeing the body. At the very worst the patient can be recognised by hair colour, hands or other distinguishing marks. If visitors are dissuaded from seeing the body on the grounds of severe facial disfigurement this runs the risk that at a later date visitors may come to think ‘if he was so disfigured that I couldn’t see him how do I know that it was him? He could still be alive’. This could drastically affect the resolution of the grief process. If visitors are very distressed it may be appropriate to remain with them but often visitors appreciate being left alone at this time. Within reason visitors should be allowed to stay with the patient for as long as they wish. If this is prolonged to several hours then visitors can be gently informed that it is time to say goodbye for now but that they can see the patient later in the hospital chapel or at the funeral directors (you should check hospital regulations relating to viewing deceased patients). A difficult problem which must be tackled at this time is what to do about jewellery, particularly wedding rings. Usually relatives want this to stay with the body but this should always be checked. Relatives may also want to leave crosses,

rosaries patient.

or other

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with

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ADDITIONAL INFORMATION FOR VISITORS After a death there are various formalities to be completed. These include collecting the death certificate from the hospital, registering the death, organising an undertaker and collecting any property. Staff dealing with bereaved visitors should make sure that they are conversant with the procedures to be followed. Hardly surprisingly, visitors are not at their most receptive at this time and it is very helpful if verbal advice is supplemented with written information (Farrell 1989). At the author’s workplace bereaved visitors are given an information booklet which includes discussion of the following: information on collection of the death certificate and the patient’s property, how and where to register a death, why deaths are referred to the coroner and on the procedures to be followed if this occurs. A useful supplement to this is the more general booklet produced by the Department of Social Security ‘What to do after a death. A guide to what you must do and the help you can get.’ (Document D49, available from the DSS.)

The role of the coroner Deaths are referred to the coroner if the death is due to violence or suspicious circumstances, if the cause of death is unknown and usually if the death occurs within 24 h of surgery. Under these circumstances the visitors will need to be informed of the reasons for referral and the fact that there may be a delay in issuing the death certificate. The coroner has the power to order that a post-mortem examination is carried out. In other situations a postmortem is voluntary and visitors should never be badgered to allow this. If a postmortem is requested and refused then this refusal should be accepted. The same applies to organ donation - if a request is made and refused then the matter should be dropped.

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A death has to be registered in the area where it occurs. This may be a source of additional distress if visitors do not live in the area. The nurse can encourage doctors and others to complete the requisite paperwork as quickly as possible and can offer to inform the visitors when this is done so that the death can be registered as soon as possible. Once the death has been registered the next of kin is provided with a certificate to be given to the undertaker and which allows collection of the body from the hospital mortuary. Coroners and undertakers are usually very keen to support bereaved families and to minimise distress. For staff who may be dealing with the bereaved it is often helpful to spend some time with the local coroner and a local undertaker so that they are familiar with the actions carried out by these individuals.

Support services Some hospitals provide counselling services for the bereaved. If these are available the visitors should be informed of the means of contacting these. Whether or not hospital support services are available it may be helpful to the visitor to receive a list of support groups such as ‘Cruse’ or ‘The Compassionate Friends’. (For the addresses of some national support groups see Dyer 199 1.) Information about these groups can be given in the information sheet provided at this time. ITU staff should also contact the visitor’s doctor GP and, if relevant, clergy of the visitors’ faith who may also be able to provide longer term support. While they are coming to terms with their loss bereaved visitors may well return to the hospital since this was the last place that they saw the patient alive. It is helpful to visitors to inform them that they can contact the hospital chaplain or a named nurse or doctor in order that they may talk through their feelings. This is often a difficult situation for ITU staff to deal with due to the pressures of work, but if we are serious about the delivery of holistic care we must remember that this care is not only directed at the patient and does not necessarily end when the patient dies. Finally, if the surviving visitor is disabled or

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elderly, it may be appropriate to contact the local social services either directly or via his/her doctor. Long-term reactions to grief or bereavement are beyond the scope of this paper, for discussion of these see Kubler-Ross 1982, Parkes 1986, Simpson 1989.

DEATH AND CHILDREN The above discussion has made no specific reference to children. Though much of the above will apply, death in childhood is a major topic in its own right so only a few observations will be made here. (For a personal view by the mother of a child who died in ITU see Martin 1986.) Death in the young is always difficult to deal with. Parents expect their children to outlive them. This particularly applies when the child is very young. When a child is dying the parents should be allowed to hold and cuddle him or her as much as possible and after death the child should be carried to the mortuary in the arms of the parents or the nurse. Other children should be allowed to view the body (at the discretion of the parents). We should remember that children also need to pass through the grief process and attempts to shield them from death may well store up problems for later life (for discussion of some relevant issues see Antonacci 1990, Thomas 1992).

SUPPORT FOR OTHER PATIENTS, VISITORS AND STAFF The focus of the above discussion has been the needs of visitors. It should be remembered that staff may also need support when a patient dies. This need may be particularly important when the patient has been in the hospital for a long time and staff have got to know the patient and visitors well. Senior staff should bear these stresses in mind and provide support for junior staff, allowing them to talk and express grief. Support groups may also be helpful in allowing staff to express their distress (Hobbs 1985).

10 INTENSlVEANDCRlTICALCARENURSlNG It should also be remembered that nurses are not the only staff who may experience stress when a patient dies. Doctors, chaplains and other staff may also suffer stress and be in need of support. The needs of other patients and visitors should not be forgotten at this time (Eastham 1990). They are usually aware of the death of a patient and should also be given support and time to express their fears and worries.

CONCLUSION This paper has described some of the issues to be considered when informing visitors that a patient has died. It is important to remember that there is no right and wrong way of giving visitors this news - as with .patient care approaches should be varied to meet the needs of the individual. The key to performing this task well is compassion - if you care and show that you care then you will almost certainly support visitors appropriately.

Acknowledgements The author would like to thank Janet Mayer, Chaplain, Queen Elizabeth Hospital, Birmingham and Sue Baker, Clinical Nurse Manager, Queen Elizabeth Hospital, Birmingham, for helpful comments on this paper.

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