Care of the bereaved

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Care of the bereaved

Introduction

It is estimated that there are some 25 000–30 000 resuscitation attempts in the UK every year (Resuscitation Council 1996, Royal College of Nursing 2002). Dealing with the suddenly bereaved in Emergency Departments (ED) is difficult for all staff, no matter how much experience they have. This chapter will consider approaches to the management of sudden death in ED. It will examine the literature surrounding this subject, before exploring the process of care for those who have been suddenly bereaved. It will also outline the care of staff that have cared for the suddenly bereaved.

Background

The literature surrounding the subject of sudden death is vast (Royal College of Nursing 2002, Mushtaq & Ritchie 2005, Moons & Norekval 2008, Kingsnorth-Hinrichs 2009). Death is the permanent cessation of all vital functions, the end of human life, an event and a state. Dying is a process of coming to an end: the final act of living (Thompson 1994). Wright (1996) defined sudden deaths as those occurring without warning – the unexpected death. Deaths that result from acute disease, accidents, suicides and homicides fall into this category. It is these sudden deaths that are most frequently encountered in ED.

The Royal College of Nursing and British Association for Accident and Emergency Medicine (1995), in the largest study of its kind, considered the facilities in ED for the bereaved. A questionnaire was sent to all 267 ED in England and Wales to identify the systems, facilities and training provided. Of the 248 (93%) departments that responded, it was possible to estimate that two to three attendances per 1000 new attendances involved relatives who were bereaved following a patient dying in the ED. Forty per cent of the departments that responded stated they had two to three deaths per week, with a further 25% having four to five deaths per week. In terms of workload and impact on the average ED, sudden death can be significant for staff as well as for relatives.

The concept of a trajectory of death was developed by Glaser & Strauss (1965, 1968) to refer to the pattern of death. They distinguish between ‘quick’ and ‘slow’ dying trajectories. Generally, in ED, the patients have a ‘quick’ death trajectory, which is unexpected by the family, even when it is the result of a long-standing medical condition, such as heart disease. Lindemann (1944), in a classic study of bereavement, suggested that people who fear the death of a loved one often begin the process of grieving before any loss actually occurs. The acute reactions to loss include an initial period of shock followed by intense emotional pangs of grief. Lindemann identified the following symptoms of normal grief:

These symptoms will be familiar to ED staff who have looked after recently bereaved relatives. Lindemann’s work stemmed from a fire at the Coconut Grove nightclub in 1942 that claimed the lives of 474 people. He found that the fire resulted in a crisis for all individuals closely involved, including staff. Scott (1994) suggested that caring for distressed relatives following a sudden death is perhaps one of the most emotionally draining of nursing interventions. Wright (1996), in a study of relatives’ responses to sudden death, found nine common emotional responses identified by nurses as difficult to manage, including:

It is noteworthy that five of the emotional responses that cause difficulties for ED nurses also correspond with what Kubler-Ross (1973) described as the stages of grief, i.e., denial, anger, isolation, bargaining and acceptance. Kubler-Ross was careful to point out that these stages do not happen in a particular order, and can occur side by side. These stages do not just affect dying patients but, as can be seen above, affect relatives and staff as well.

There is, however, debate regarding the usefulness of identifying emotions in an attempt to define the manifestation of grieving as this may lead people to think of grief in a simplistic way. Thus the theories and emotions attributed to grief should only be used as a guide to inform the possible reactions experienced by those who are bereaved (Kent & Dowell 2004, Oman & Duran 2010). That noted, people experiencing the sudden unexpected death of a loved one are at risk of more pronounced and prolonged grief reactions than those who had been expecting death. There is also a higher morbidity rate among these people in the following two years after the death (Kent & Dowell 2004).

Preparing for receiving the patient and relatives

With growing improvements in communications technology, staff are increasingly informed of the impending arrival of critically ill or injured patients by ambulance control or the ambulance crew en route from the scene. This enables staff to prepare the resuscitation room and contact the on-call medical, paediatric and anaesthetic teams as appropriate. In accordance with advanced life-support principles, staff should be designated specific roles for the management of the patient (see also Chapter 2).

The 5–10 minutes’ forewarning also serve to mentally prepare staff for the arrival of patients and their relatives. This time can also be used to provide support and guidance for more junior staff about what they might expect. A member of staff should be allocated to receive relatives. This nurse should not have any clinical responsibilities in the management of the resuscitation (Box 14.1).

Box 14.1   Principles of best practice when caring for the suddenly bereaved in ED

Contacting relatives or friends (see also Box 14.7)

• Communicate by telephone

• Speak to the most significant relative or friend, state own name and position held. If this is not the significant relative, it is important to ascertain where this person can be found

• The caller should state his name, designation and the hospital from which he is calling

• Give the patient’s full name

• If there is doubt about the identity of the patient, state it is believed to be this person

• After giving this information, the caller should check that the relative is clear about:

• The relative should be advised:

• Check understanding

• Records of the time of the call, who made the call, who responded, and how, are important. After a death, some relatives may want to clarify details

(After Kent H, McDowell J (2004) Sudden bereavement in acute care settings. Nursing Standard, 19(6), 38–42.)

When anxious relatives arrive, they should be met by a named link nurse and not be kept waiting around at reception for the department’s communications to be established (Purves & Edwards 2005, Oman & Duran 2010). While the term ‘relatives’ is used throughout this chapter, it is important to note that in some instances close friends or partners of either sex may be severely distressed and should be handled in the same way as the relatives.

Witnessed resuscitation

Witnessed resuscitation, the practice of enabling relatives to stay in the resuscitation room while their loved one is being resuscitated, remains controversial (Boyd & White 1998, Royal College of Nursing, British Medical Association and Resuscitation Council 2002, Emergency Nurses Association 2009, Kingsnorth-Hinrichs 2009, Oman & Duran 2010). In a review of 117 studies into family presence, as witnessed resuscitation is also known, the Emergency Nurses Association (2009) found the following:

• there is some evidence that patients would prefer to have their family members present during resuscitation

• there is strong evidence that family members wish to be offered the option to be present during invasive procedures and resuscitation of a family member

• there is little or no evidence to indicate that the practice of family member presence is detrimental to the patient, the family or the healthcare team

• there is evidence that family member presence does not interfere with patient care during invasive procedures or resuscitation

• there is evidence that healthcare professionals support the presence of a designated healthcare professional assigned to present family members to provide explanation and comfort

• there is some evidence that a policy regarding family member presence provides structure and support to healthcare professionals involved in this practice

• family member presence during invasive procedures or resuscitation should be offered as an option to appropriate family members and should be based on written institution policy.

Dolan (1997) has argued that ‘enabling witnessed resuscitation is about having enough faith in ourselves as carers to show we are not afraid of others seeing us losing the battle for someone’s life’, and Connors (1996) suggests that the advantages of allowing relatives to be present in the resuscitation room appear to outweigh any potential disadvantages. Boxes 14.2 and 14.3 outline healthcare professionals’ concerns about allowing relatives into resuscitation rooms as well as reasons why relatives should be allowed in the resuscitation room.

Witnessed resuscitation was first documented by the Foote Hospital Michigan, after they introduced the system in 1982 following two incidents when family members insisted on being present (Doyle et al. 1987). They questioned recently bereaved relatives and found that 72% would have liked to have witnessed the resuscitation attempt. As a result, a programme of witnessed resuscitation began; however, there was resistance from many staff members. In an audit three years later, staff were questioned about their views and 71% endorsed the practice even though some felt it had incurred an increased stress level, largely because the patient undergoing resuscitation becomes ‘more human’ in the presence of family members. In a follow-up paper, Hanson & Strawser (1992) argued that in their nine years of facilitating acceptance of death and grieving by this method, staff members continued to find it a humanizing and workable experience.

A UK study by Robinson et al. (1998) found there were no adverse psychological effects among relatives who witnessed resuscitation, all of whom were satisfied with the decision to remain with the patient. The trial was discontinued when the clinical team involved became convinced of the benefits to relatives of allowing them to witness resuscitation if they wished. Psychological follow-up at three and six months found fewer symptoms of grief and distress in the group who had witnessed resuscitation than in the control group. Of the patients who survived, none believed that their confidentiality had been compromised.

Witnessed resuscitation is becoming more common and relatives will, in future, increasingly insist on being present. It is already seen as good practice by the working group of the Royal College of Nursing and British Association for Accident & Emergency Medicine (1995) as well as recommended practice by the Royal College of Nursing, British Medical Association and Resuscitation Council (UK) (2007), Emergency Nurses Association (2009) and European Resuscitation Council (Nolan et al. 2010). Nurses should anticipate the changing needs of the community and plan this change carefully. Hampe (1975) found that family members expressed three main needs:

It was also found that the least supportive measure was to remove the family members from the bedside. Given that resuscitation attempts are unsuccessful in 70–98% of cases and death ultimately is inevitable (Nolan et al. 2010), causing those who have been bereaved to feel left out, uninformed and helpless may lead to feelings of anger that can result in unnecessary despair during the grieving process (Kent & Dowell 2004).

For staff who have, or wish to develop, a witnessed resuscitation policy, Box 14.4 offers guidance on what to say to relatives prior to witnessing a resuscitation. Box 14.5 provides guidance for the team leader, doctors and nurses on how to stop an arrest with relatives present.

Box 14.4   Suggested guidelines for staff on what to say to relatives prior to witnessing a resuscitation

• Relatives should be informed that their loved one is very ill and that at present their heart has stopped, so the doctors and nurses are having to breathe for the patient and artificially make her heart pump by pressing on her chest wall. If there is any signs that the heart is starting to function again, then the team may have to give an electrical shock to try to kick start the heart again

• Relatives should be informed that the prognosis is very grim and it is very unlikely that their loved one will live. Should the patient come out of this event then the next 24 hours will be critical and there is the likelihood that this event will recur

• Relatives should be given the choice of going into the resuscitation room; they should never be made to feel they must go in

• The link nurse should describe the patient’s appearance, treatment, jargon and equipment in use and where they can stand in the resuscitation room

• Relatives should be informed that it is acceptable for them to come in for a couple of minutes at a time and leave whenever they wish

• Relatives should be informed that even though their loved one cannot respond to them it is possible that she might be able to hear them. This information should only be given to relatives who have decided to enter the area

• Relatives should be informed that no more than two to three relatives are allowed into the resuscitation room at any one time, as more might distract or hamper the resuscitation attempt. This number is suggested as it would be very difficult and distressing to the relatives to allow two out of three attending the department into the resuscitation area. The third person would then be lacking in support

• Relatives should be informed that the doctors, radiographers etc. may ask them to wait outside while some investigations, such as X-rays or invasive procedures, are carried out

• Relatives should be informed that at some point the team will feel that they have done everything possible to regain life, and that unfortunately their loved one is going to die. When this decision has been reached, the carer should say something like, ‘We’re going to stop soon, we’ve tried everything and nothing is helping’

• Before all attempts have ceased, the team should try to accommodate the relatives and give them the opportunity to be able to get close to their loved one to say ‘goodbye’ etc.

Breaking bad news

For relatives who are waiting in the ‘sitting room’ or ‘relatives’ room’, it should be sensitively decorated, bright and well lit (Box 14.6). Frequent updates on the patient’s condition are important. The link nurse should liaise with staff in the resuscitation room to maintain communication between the relatives and the resuscitation team. Concise terms such as ‘critical’, ‘serious’, ‘good’ and ‘fair’ appear to be reasonably understood by lay people and professionals alike.

In the event of cessation of resuscitation, if relatives are not present when the patient dies, or if they arrive after the death, staff will have to break the news to them. McLauchlan (1996) suggested that breaking bad news has to be tailored to the situation and particular relatives; however, the following principles apply:

• on leaving the resuscitation room, the breaker of bad news, who is usually a doctor but may also be a nurse, should take a moment to gather his composure. Removal of plastic aprons, stethoscopes around the neck and other obviously clinical paraphernalia is recommended

• it is important to confirm that the correct relatives are being addressed. It can be a simple but traumatic mistake to inform the wrong people of the death of a relative. If there is more than one victim, assign one staff member to each group of survivors/relatives (Chan 2009)

• on entering the relatives’ room, it is important for the nurse and doctor to introduce themselves and also establish those in the room and their relationship to the patient. Sitting down to talk with relatives gives the impression that the bearers of bad news are not in a rush to leave

• during the interview, it may be helpful and natural to touch or hold the hand of the bereaved relative(s). While various social and cultural factors may influence the appropriateness of this, if it feels appropriate then it probably is right

• getting to the point quickly is important.

When providing information and answering questions, keep it honest, direct and simple. Phrases like ‘dead’, ‘death’ and ‘died’ should be used as they are unambiguous. Giving the news thoughtfully and showing concern will enable the relatives to understand the event as reality.

• if a language barrier exists, attempt to obtain a translator from outside the family and prepare the translator. If a family member is the only translator, it is important to acknowledge how difficult a task it is to hear bad news about a loved one and to explain the news to someone else

• euphemisms should be avoided at all costs. Table 14.1 outlines phrases that should not be used when breaking bad news

Table 14.1

Phrases to be avoided when breaking bad news

What is said What the relative may understand
We have lost him He has gone missing in the hospital
She has passed on She has been transferred to another ward
He has slipped away He has sneaked out of the department
She has suffered irreversible asystole Nothing!

• after breaking the bad news, allow time and silence while the facts sink in, re-emphasizing them if appropriate. Sometimes, just listening to someone who is distressed, or sitting in silence with them, witnessing their grief, may be the most important service a nurse or doctor can provide for someone who is bereaved (Casarett 2001)

• be prepared for a variety of emotional responses or reactions. Some may appear unmoved, while others will sob and wail. These reactions are not the fault of the bearer of bad news, but are a reaction to the news itself

• offer the relatives the opportunity to view the deceased.

Communication is a dynamic, complex and continuous exchange (Winchester 1999). Frequently, however, the person communicating the bad news feels that it has been done badly. In a health profession which still sees death as a failure, this is not surprising, especially when it is compounded with the powerful feelings evoked by sudden death. Thayre & Hadfield-Law (1995) noted that, when preparing to give bad news, it is essential that the nurse is aware that increasing urbanization, advances in medical technology and skills, and the declining size and importance of the extended family have all decreased people’s experience of close death. In addition, changing cultural and religious practices mean that nurses may not always be aware of family needs in this respect. It is also important to stress that when breaking bad news the medical facts are less important than the compassion shown to relatives.

Telephone notification

Where possible, telephone notification of bereavement should be avoided as it can cause acute distress to the receiver as well as to the person delivering the news. Wright (1993) noted that the feelings of a person receiving information over the telephone frequently include the following:

Fears of the individual giving information over the telephone may include:

Thayre & Hadfield-Law (1995) suggested that information given over the telephone should be in small units. Following the shock of bad news, people tend to respond only to simple questions or instructions and may be slow to take in involved explanations. Jones & Buttery (1981) found that relatives only rarely asked over the telephone whether their loved one was dead. Box 14.7 outlines the information that should be given to those who ring or are contacted about death or critical illness of a relative.

Viewing the body

The opportunity to see the dead person should always be offered and gently encouraged (Haas 2003). While some well-meaning friends or relatives may discourage this act, it is an important part of accepting the reality of the situation and can facilitate grieving and ease feelings of guilt after sudden death. Jones & Buttery (1981) found that relatives of sudden-death victims who spent time with the body in the ED concluded that the viewing process was helpful.

The environment in which the relatives view the body should be made as non-clinical as reasonably possible. Monitors should always be switched off. Drips and invasive treatment aids, such as ET tubes, catheters and cannulas, should be removed. Before allowing viewing, blood should be wiped from the patient’s body, eyes should be closed and a blanket should cover the patient up to the upper shoulder. Leaving the deceased person’s arm(s) over the covers and respectful washing of the face and combing of the hair should be done before relatives attend. Religious insignia can be added as appropriate. Sufficient chairs should be available for relatives to sit down. Reluctant or unwilling family members should be reassured that viewing is a highly personal decision and that a decision not to view the deceased person may be best for many people. What is essential is enabling relatives to have the choice to view or not view the deceased person.

When the dead person is disfigured or mutilated, the relatives’ wishes are paramount. Gentle, honest explanations beforehand can inform the relatives’ decision about whether they wish to see the dead person (Davies 1997). The relatives should be encouraged to touch, hold, kiss, hug or say goodbye to their loved one. When speaking of the dead person, use the person’s name, ‘him’ or ‘her’, but never ‘body’ or ‘it’. Warn the family that the patient may look different from their expectations. Unless there are suspicious circumstances and the police wish to remain with the body, the relatives may also like to be left alone with the body and must be given permission to stay as long as they wish or as is practically possible (Morgan 1997). As Boucher (2010) notes, relatives should not be regarded as complications, but as extensions of the patient’s lives and their need to say goodbye their loved ones should not be underestimated.

Organ donation

Body organs, e.g., the kidneys, heart, liver, pancreas and corneas, and tissues may be donated by the patient for availability for transplant. There is, however, a great shortage of organs for transplant, which continues to limit transplant efforts. The demand is growing at a much greater rate than the supply with more than 10 000 people in the UK currently needing a transplant. Of these, 1000 will die each year waiting as there are not enough organs available (Sque & Galasinski 2013, Department of Health 2011). Currently only 28 % of the UK population are on the organ donation register (Vincent & Logan 2012). The usage of potential organs from emergency departments is very low.

Donation after circulatory death (DCD) describes the retrieval of organs for the purpose of transplantation that follows death confirmed using circulatory criteria. DCD represents approximately one third of all deceased organ donors, and usually all found in ED (Manara et al. 2012). The majority of transplants use organs from heartbeating donors after brain death (DBD). DBD are more likely to donate multiple transplantable organs (mean 3.9 organs vs 2.5 for DCD in the UK) (NHS Blood and Transplant 2011), and are currently the only reliable source for cardiac transplants (McKeown et al. 2012).

Wellesley et al. (1997) noted that the organs that can be donated from ED include corneas, heart valves and, in certain departments, kidneys. For heart valves there must be no congenital valve defect, no systemic infection, no hepatitis B or C, and the donor must not be HIV positive. For corneas, there are even fewer contraindications: no scarring of the cornea, no infection in the eye and no invasive brain tumours. Both organs are very successfully transplanted, with at least 85 % success for corneas and even higher for heart valves, due to the absence of rejection problems. Currently, most transplants follow multiple organ retrieval from heartbeating brain-dead organ donors (McKeown et al. 2012).

Consent from the coroner may be a limiting factor to tissue retrieval in the ED. Unless a doctor is prepared to sign a death certificate to state that a patient died of natural causes then the coroner must give consent prior to removal of any organ or tissue, as stated in the Human Tissue Act 2004.

Many nurses believe relatives should not be approached about organ donation in the ED, feeling that they have been through enough (Coupe 1990). However, a recent small-scale study by Wellesley et al. (1997) highlighted that 27 (72.9 %) of the 37 recently bereaved respondents to a questionnaire would not have minded being asked about organ donation following a sudden death. They suggested that the subject could be broached by having leaflets in the room where relatives are given the bad news, as a way of introducing this delicate subject and providing more information. They believe the interview with bereaved relatives needs to be carried out sensitively by senior nurses, registrars or, in some cases, the consultant, who have been appropriately trained and who have access to staff support within the ED (see also Chapter 39).

Legal and ethical issues

Contact with the coroner’s officer may occur in the ED or in the home when the notification of the death and identification of the body are established. It is important to distinguish between a coroner’s officer who gathers and records details related to the death, e.g., by attending postmortems, and the coroner, usually a doctor or lawyer, who responds to the results of the details by concluding on the circumstances of the death and reaching, if necessary, a verdict at inquest.

Scott (1995) suggested that relatives are often devastated by the news of the death and that these feelings are intensified at the thought of the purposeful mutilation of the body at autopsy. In fact, the autopsy is a legal requirement for most deaths that occur in the ED (Box 14.8). This information needs to be conveyed to patients in a dignified, sensitive way.

Controversy exists over whether personal possessions, and in particular jewellery and precious metals, should be given to relatives. Should relatives wish to remove any rings or special belongings, they should be enabled to do so. Legally, a witnessed signature is sufficient to corroborate the act of handing over or retaining property and this may be obtained from another nurse, doctor or coroner’s officer (Cooke et al. 1992). Clothing should be carefully folded and itemized along with any other possessions such as jewellery and money. The nurse should seek permission from the family to dispose of badly damaged clothing. This should be recorded in the patient’s notes.

Advanced care directives

An advance care directive (ACD), sometimes called a ‘living will’, is a document that describes one’s future preferences for medical treatment in anticipation of a time when one is unable to express those preferences because of illness or injury (New South Wales Department of Health 2004). For many years it has been a general principle of both common law and medical practice that people have a right to refuse treatment.

The guidance on ‘Advance Decisions to Refuse Treatment’ (National Council for Palliative Care and Department of Health 2008) acknowledges that it is a general principle of law and medical practice that people have a right to consent to or refuse treatment. The courts have recognized that adults have the right to say in advance that they want to refuse treatment if they lose capacity in the future – even if this results in their death. A valid and applicable advance decision to refuse treatment has the same force as a contemporaneous decision. This has been a fundamental principle of the common law for many years and it is now set out in the Mental Capacity Act 2005. Sections 24–26 of the Act set out when a person can make an advance decision to refuse treatment. This applies if:

Healthcare professionals must follow an advance decision if it is valid and applies to the particular circumstances. If they do not, they could face criminal prosecution, i.e., they could be charged for committing a crime, or civil liability, i.e., somebody could sue them.

Healthcare professionals will be protected from liability if they:

People can only make an advance decision under the Act if they are 18 or over and have the capacity to make the decision. They must say what treatment they want to refuse, and they can cancel their decision – or part of it – at any time.

If the advance decision refuses life-sustaining treatment, it must:

To establish whether an advance decision is valid and applicable, healthcare professionals must try to find out if the person:

ACDs will become increasingly common in EDs, partly in response to changing social structures, demography and demands. Respecting the desires of the patient and their family, plus enabling individuals to achieve a sense of control of their own health reflects best care at a particularly difficult time in people’s lives.

Staff support

Cudmore (1998) believes that ED nurses are ‘at risk’ of developing post-traumatic stress reactions because of their exposure to traumatic events as a routine part of their job, which for most people would be outside the range of human experience. Walsh et al. (1998) argued that if stress is the main cause of burnout, then understanding coping mechanisms is the key to minimizing the problem. Coping strategies employed by those working with trauma include the following:

Box 14.9 outlines the effects of traumatic events on carers. The following are methods that staff working with dying people can use to improve their coping skills:

Nykiel et al. (2011) stress the importance of ongoing education on the relevance of family presence and its benefits through in-service training and meetings.

(Defusion, demobilization and critical incident debriefing skills for staff are discussed in detail in Chapter 13.)

Conclusion

Sudden death, by whatever cause, is a stressful and distressing event for staff as well as for patients’ relatives. While EDs may be geared towards saving lives, death should not be seen by staff as a failure. No matter how confident or experienced the practitioner, it is never easy to tell relatives or friends that a loved one has died (Kendrick 1997). In relation to the needs of relatives, Dolan (1995) argued that:

This chapter has highlighted the process of care for those who have been suddenly bereaved. Within an ageing society, it is likely that more people will require the resuscitative efforts of ED staff; however, many will not survive. Their relatives are particularly vulnerable in this traumatic situation and require the nurse to advocate for them at this time, enabling them to witness the resuscitation if they wish and receive the news of death with compassion and understanding. For ED personnel, training and ongoing support will enable them to deal with the challenges of caring for such vulnerable people. The unexpected end of one person’s life is the beginning of someone else’s grief. ED nurses are in a key position to enable a relative’s last memory of a loved one to become a lasting memory of compassionate support and care.

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