16 - Ritual and religion | Oxford Textbook of Palliative Care for Children (Liben, Oxford Textbook of Palliative Care for Children)

Editors: Goldman, Ann; Hain, Richard; Liben, Stephen

Title: Oxford Textbook of Palliative Care for Children, 1st Edition

> Table of Contents > Section 2 - Child and family care > 14 - After the child's death: Family care

After the child's death: Family care

Frances Dominica Sister

To live through the death of your child is perhaps one of the most painful experiences known to humankind. It is instinctive in parents to nourish and protect their child. Death is to be fought, even to the point of sacrificing your own life. If the fight is lost, life is quite literally beyond control. The death of your child leaves you feeling helpless, guilty, powerless and broken.

Nothing can take away the pain you experience, but there are small ways in which it can be made a little less appalling. If you feel that you have some control, not over the fact of death itself would that it could be so! but over the events, encounters and exchanges surrounding death, then maybe you can find a little comfort in the midst of the hell of it all.

I have come to believe that there is in every human being the instinct to meet death with a nobility and a rightness which we rarely know we possess ahead of time. It is an instinct at the gut level, far deeper than reason or rationale. The more developed and sophisticated and cerebral the society in which we live, the deeper that instinct tends to be buried. But it is there. Those of us who find ourselves alongside those who grieve the death of a child need to have an unfaltering belief in that inherent instinct. The families are the experts, but they need others to affirm them. Those others are not there to tell them how they should think or behave, but to stay with them while they discover the answers within themselves.

The circumstances of death

The death of a child in this country is rare, yet for approximately 10,000 families in England and Wales annual statistics are irrelevant. The thing every parent dreads most is happening; their child will die from a life-limiting illness.

Children die in very different circumstances. Many die in early infancy. At two extremes, some die instantaneously, others live for many years with a progressive illness. In the case of sudden death there is no opportunity for preparation or anticipatory grieving.

With illness or handicap which is compatible with life for a period of time the family will experience bereavement long before their child dies. They may want to make plans for the time of their child's death while the child is still alive, or they may feel unable or unwilling to do so. We need to remember that no two situations are ever the same.

Many families, given the choice and the necessary support, choose to care for their child at home. Every effort should be made to make this possible. In any case what matters most is that the child and the family feel at home wherever they are.

Towards the time of death

The most important people in a child's life, usually the parents, brothers and sisters, should, where at all possible, be with the child when he or she is dying, whether at home, in hospital, hospice or elsewhere.

To be in bed with the child, sharing a sofa or a large enough, comfortable armchair, may be best, given the choice.

If the child is still conscious, he or she may still have questions to ask and hopes or fears to express. These need to be met with honesty and simplicity and the reassurance that they are being heard.

It is natural to cuddle a child, to stroke the child gently, to talk to him or her. It is important to remember that hearing is usually one of the last faculties to be lost and that just because the child is no longer able to respond, it does not mean that he or she cannot hear.

The professional person's task at this stage, or that of the caring friend, is to ensure that the child is as comfortable as possible and is suffering the minimum of distress (see also

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Chapter 34, Symptom control at the end of life, Davies), all the while giving gentle reassurance.

Sisters and brothers at the time of death

It has been our experience that it is best for sisters and brothers to be closely involved at this stage, as at all other stages, whatever their age or understanding. To be excluded often leads to deep-seated distress and anger for years to come.

Including them means answering questions honestly, asking them their wishes and their views and explaining things in a simple, straightforward way.

We may instinctively try to protect children from such pain, but to exclude them from the death of their sister or brother may give rise to fantasies more terrible than reality. Reality can more often be contained and controlled in the memory. Fantasy readily runs out of control.

Ideally the room where the sick child is being cared for should be arranged to allow other children to come and go freely. Someone should have the job of taking care of their immediate needs and focusing attention on them. These needs may be very great in the hours following the death of their brother or sister. They may feel an urgent need to protect themselves or to be protected in their extreme vulnerability.

However strongly we may feel about the benefits of including well children at every stage, once we have offered the view and given support for their inclusion, the parents and the children themselves must feel free to make their own decision. They usually know better than anyone else.

Grandparents, relatives, and friends

The grandparents' position is very painful. Not only are they watching their grandchild die, but they are also having to stand by and see the extreme distress of their own child. Their presence and practical role at this stage can only be decided with the parents.

Other relatives and close friends may or may not be welcome when the child is dying.

A time like this often brings the best out of human relationships but it can also bring out the worst. It needs great skill to deal with arguments and dissension in such a setting. It is not for the friend or professional to take sides but to try to ensure the greatest comfort and well-being of the sick child.

The trusted friend or professional person may well need to protect the child's family when relatives or friends try to make decisions on behalf of the family. This attempt to take over is often made with the best motives and with a genuine desire to help the family but it may be unhelpful. Given time and support parents will make their own decisions. Meanwhile it may be that the friend or professional can offer the greatest help by giving time to relatives and friends, thus taking some of the pressure away from the family.

When a child dies the death having been expected

The parents will often ask if the child has died. Their next question will be, What do we have to do? There is no hurry to do anything.

Those closest to the child may want time just to be there with the child. They may want to pray or they may ask someone else to pray with them for their child, either formally or informally. For some parents this may be the moment when they say Goodbye to their child.

When the parents are ready they may choose, with or without help, to do the various things necessary for their child themselves, they may ask someone else to do these things for them or they may have specific needs related to their culture or religion (see below). All families need the opportunity to discuss the choices and their preference.

The child may be washed. Nails may need attention. Wounds may be re-dressed, using waterproof dressings. It may sometimes seem advisable to introduce cotton wool into the anus but other orifices do not normally need packing. If the child has a central intravenous line the funeral directors will usually remove it. However if the parents want it removed sooner it can be tied off firmly just below the skin level (by pulling it gently forward) and then cutting it distally, and the tied end will slip back below the skin.

The child is dressed in whatever clothes the parents choose (nightdress or pyjamas, favourite track suit, first Communion dress, Batman outfit, shroud nothing is inappropriate if it is the choice of the family.) The child's hair is brushed or combed in the usual style, and the body gently straightened on the bed.

It may be helpful to place a small cushion or pillow under the child's chin for 2 or 3 h to ensure that the jaw does not fall open. Likewise the eyelids may be gently closed and pads of wet cotton wool may be placed on them for a time. If there is any problem with this the funeral director will be able to help.

When the death of a child is sudden and unexpected

When a child dies suddenly and unexpectedly the coroner is informed, normally by the doctor. A coroner's officer (who may be police or civilian) will follow up enquiries. If police visit the child's home they will normally be in an unmarked car and where possible in civilian clothes. The child's body will

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normally be taken with the minimum of delay to a hospital mortuary by a funeral director acting under instructions from the coroner's office. A post-mortem may follow.

The lack of time and opportunity for the family to say goodbye to their child or to do anything for their child at this stage can be extremely distressing.

Once the coroner is satisfied and the body is released it may continue to be cared for in the hospital mortuary, or may be taken home or to the chapel of rest belonging to a funeral director.

After the death

The place where the child's body will lie until the funeral

The choices listed below assume that the coroner is not involved or that he has been involved and has subsequently released the body.

When a child dies the parents may choose:

To have their child's body taken to a chapel of rest in a hospital or at a funeral directors .
To care for their child's body at home for some or all of the days leading up to the funeral.
To use the special room of a children's hospice, if this is available. Such rooms are designed to be like an ordinary bedroom but will have a built-in cooling system, sufficient to allow the child's body to remain there for several days, regardless of outside temperatures.

When a child dies at school or in any other place, whether from illness or accident, after the initial necessary action is taken and legal requirements are met, the parents should still be given the choice of where their child's body will be cared for until the funeral.

Caring for the child's body at home

Many people do not realise that in the United Kingdom parents have the option to care for their child's body at home unless the death has been reported to the coroner, and even then it may be possible once the coroner has released the body.

A child who dies in hospital or anywhere else other than home and who is small enough can simply be wrapped in a blanket and carried to a car and so transported home. A funeral director will give the necessary help for a child who cannot be transported in this way.

Hospital staff and others should co-operate fully in implementing the parents' choice. Parents may like to wait until they reach home before washing and dressing their child. In preparing the bed which is to be used it may be helpful to place waterproof protection over the mattress. The bed may be in the child's bedroom or any other suitable room. Family members may want to arrange flowers, toys, photographs and candles, and to make the room special for the child. They may want to remove equipment which the child has needed and which is no longer necessary, but they may not yet be ready to do this.

The room needs to be kept as cool as possible, with fresh air circulating freely. This can be helped with the use of a portable air-conditioning unit. This will help to delay the changes in the body, which sometimes give off an unpleasant smell. Air fresheners may help.

Once relatives and friends have overcome their initial apprehension, usually due to unfamiliarity with death in their own homes, they may well find that some of their fears are overcome by seeing and even touching the body of the child, in the more natural environment of home as opposed to hospital or chapel of rest.

In hot weather or in circumstances where it is difficult to keep the room sufficiently cool it may be best for the child's body to be taken to a chapel of rest after 2 or 3 days, but this is not always necessary.

The child's family will often find themselves in the unexpected role of comforter to those who come to visit in the days following their child's death. If the family has been allowed to be in control of events surrounding the death and to grieve in their own particular way, supported by those around them, they will be more able to meet the shock and raw grief of others.

Sisters and brothers seeing the body of the child who has died

Children of all ages often have frightening and lurid ideas of what people look like when they have died, for example, lots of blood, the body decapitated or squashed, the flesh turned black. These ideas often originate from films, videos or comics.

Children may also wonder how you know for sure that someone is dead. Older children may be reluctant to admit that they do not know the answers to their own questions. It is almost always helpful for them to see their sister or brother after the death, whether they have been present at the time or not. They will need to know that when someone dies their body temperature gradually drops until eventually they feel very cold to touch.

They may ask many questions to which we do not have the answers but, if they see their sister or brother for themselves, at least some of their fears may be dispelled. Some may find the analogy of a butterfly emerging and leaving its chrysalis behind helpful. Others may like to think of the body as a shell.

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If the child's body is badly mutilated it may still be possible for sisters or brothers to see some part of the body, for example, a hand or foot, or the face, while the rest of the body is covered. Children and adults find it harder to believe that someone has really died if they never see the body. However, the fact that part of the body remains covered may in itself give rise to uncontrolled fantasy and fear. Nothing is perfect in such traumatic situations and one can only do what one believes to be right at the time.

If the brother or sister does not see the body either through choice or circumstance, it may be important to encourage them to talk about it at a later stage. Drawing or playing may be useful ways of working out a way of living with the reality of what has happened.

Telling relatives and friends of the death of a child

Parents will often want to tell relatives and close friends of the death of their child themselves, either in person, or by telephone or letter. Word of such a tragedy spreads fast but one way in which friends may be able to help is to offer to inform specific people.

The family may welcome the offer of a friend to spend time with them in the early days of bereavement with the intention of protecting them when they do not feel able to answer the door to visitors or to cope with telephone calls. This is a very personal thing and can only be done with common sense and great sensitivity. The family may be overwhelmed by callers at this stage but would often welcome them in the loneliness of the weeks and months to come.

Telling children in school

Telling children in school that one of their number has died is a particularly difficult task, requiring great sensitivity on the part of the head-teacher, chaplain, or other members of staff. Honesty, directness and simplicity should be the mark of such an announcement. The same principles apply in telling youth groups and other organisations, to which the child may have belonged.

It will help the children in their shock and grief if they can see for themselves that the adults around them are experiencing the same emotions. To make brief reference to the death of someone who has been amongst them as one of them, and then to carry on as if nothing has happened, is at best, bewildering to the other children, however young.

It is helpful to be given permission to cry, however young or old you are, and to be assured that tears are, in themselves, healing in the outpouring of emotion. To be told that, Big boys don't cry or that, Nice girls don't get angry is unhelpful and blatantly untrue.

Children like to know that they can talk privately to a teacher or other adult if and when they need to, without having to display their ignorance or vulnerability to their peers.

Some sort of remembrance event at the school or other organisation, marking and celebrating the child's life and giving an opportunity to express sorrow and all the conflicting emotions that will arise, may be creative and healing.

Special sensitivity is needed in welcoming back the brothers or sisters of a child who has died. They may appreciate being asked if they mind their brother or sister being talked about and if anything can be done to make this time easier for them. The bereaved child will not get over the death in days or weeks, or even months, and will need great patience and understanding on everyone's part. Grief may manifest itself in many ways, sometimes in behaviour which is difficult to accept.

Deaths which are reported to the coroner

The rules regulating which deaths should be reported vary from country to country. In the United Kingdom, they include:

a child who has not been seen by a doctor in the 14 days prior to death;
any sudden or unexpected death;
death at operation or procedure before full recovery from anaesthetic;
death occurring within a year and a day of an accident considered to be the direct cause of death;
any suspicious circumstances, for example, violence, neglect, poisoning.

The coroner will decide whether a post-mortem is required.

Post-mortem examination

As well as in situations when a post mortem is required by law consent may also be sought from parents where a postmortem is not obligatory but where it is thought that it would be useful in revealing the effects of the disease on the child, or for other reasons which the doctors concerned will explain to the parents. This decision may be exceedingly difficult to make. The parents may find it a little easier if they know that other children with a similar condition may be helped by the knowledge gained through a post-mortem examination on their child. In some cases, the findings of a post-mortem examination may affect decisions made by the parents about further pregnancies.

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Where a choice must be made, those standing by the parents while they reach their decision must be sensitive and never coercive. The parents may feel that their child's body has already suffered enough trauma and they must not be made to feel guilty if they refuse permission.

Parents can be reassured that if they do decide to give permission for a post-mortem examination it will still be possible for them to see the body of their child afterwards and, possibly, to care for it. It is a surgical operation and is not mutilating; any necessary incisions will have been closed and dressed as in normal surgical procedures. In many cases examination is limited to a specific organ or organs and parents who agree to a post-mortem may ask that it should be limited in this way. They will also want to be reassured that the organs will be returned to the body unless they give permission otherwise. Nevertheless some parents may feel emotionally unable to see or touch their child's body after a post-mortem examination and they must be given plenty of time and, where possible, the right environment in which to say their goodbyes before the procedure.

Many parents find that meeting with their doctors to hear the result of the post-mortem, both what was found and what was not, and why the child died, is in the long term a comfort. At a later stage they may feel the need to discuss the findings again.

Donor organs

Some parents will find it comforting to think that, by allowing a part of their child's body to be used, another child may be given the gift of life and health. They can be assured that the recovery of organs and tissues is carried out with great care by qualified surgeons. The body of their child will not be disfigured.

The use of donor organs does of course depend on those organs being healthy and also, with the exception of the cornea and heart valves, on the donor dying in hospital. The donor must not have malignant disease (with the exception of some cerebral tumours), major sepsis, viral hepatitis, or be HIV positive.

Two doctors will carry out a series of tests independently in order to confirm that the child is brain stem dead before any procedure to remove organs can take place. Brain stem death usually follows a severe brain injury which causes all brain stem activity to stop. This may be the result of a major accident or of a clot, haemorrhage or severe swelling causing interruption of blood supply to the brain. It can be very painful for parents to say goodbye to their child while the child is still being ventilated and therefore appears to be alive . They need to know ahead of time that although they may be able to accompany them to theatre, they will not be with them when they are disconnected from the ventilator. To know that someone understands their distress in this respect will help a little.

If, for whatever reason, the parents offer to donate organs from their child is refused, they may feel a sense of hurt and rejection. The reasons for the refusal need to be carefully explained and genuine gratitude expressed for the generosity of the parents.

The transplant co-ordinator will always be willing to spend time with the family if requested.

Embalming and the use of cosmetics

Embalming is sometimes useful if the child's body is to remain at home until the funeral, or if there is a longer than usual delay between the time of death and the funeral.

It is a process performed by the funeral director at his premises in which blood in the arteries is replaced by a preservative, normally a solution of formalin. This delays decomposition of the body and the resultant smell.

Cosmetics will not often need to be used for a child though, appropriately and discreetly used, they may sometimes help to lessen the appearance of bruising for example, or to give the lips a more natural appearance. Cosmetics should not normally be used without the express permission of the child's parents.

Preparing for the funeral

The funeral director

The choice of funeral director is very important. If it is possible to choose one who is sensitive to the particular needs of a family whose child has died, this is of immense help. The funeral director can do much to help or hinder the family in the initial days of their grief following the death of their child.

The funeral director's role is to inform the parents, in a straightforward and uncomplicated way, of the various choices available to them. Many parents will not know that they can shape the funeral service so that it is fitting for their child and family.

The funeral director's advice may be sought, but the family should never feel coerced into making decisions against their will or before they are ready.

The funeral director can make the difference between an appalling experience which does nothing to convey the love and respect felt for the child, and an event which, in all its unspeakable tragedy, can be looked back on as right for this special child.

The family may choose to make most of the arrangements or may ask the funeral director to do so on their behalf. Whatever is decided, the funeral director should give an

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itemised written estimate of the costs to the family before acting for them. This will include the fees paid on behalf of the family, for example, crematorium fees, burial fees, doctor's fees for cremation papers, minister's fees etc., as well as professional fees paid to the funeral directors. Occasionally some of these fees may be waived; therefore it is not always possible to give an exact estimate.

Many funeral directors make no charge for the funerals of babies or small children. They will in any case be able to give advice if there are financial difficulties, as will a social worker.

The minister of religion

The degree of involvement of a minister of religion at the time of a child's death will depend on many things, not the least of which are:

any previous relationship with the child or family;
requirements of the religion to which the family may belong;
the character of the minister and whether the support he or she offers is perceived by the family to be relevant.

The majority of families living in the United Kingdom will ask for a minister of the appropriate religion to conduct the child's funeral, although this is not essential. (See section on The person who will officiate .) If the family does not know whom to contact, the funeral director will offer to do this on their behalf.

The person who will officiate at the funeral

This may be:

a minister of religion;
a member of the family or close friend who is able to conduct a meeting;
a representative of an appropriate organisation.

If the person officiating has not known the child it is essential for him or her to be told something about the child. Sometimes a person who has known the child but who is not the officiant may be invited to give the address or homily. Anyone may be invited to take a particular part in the service, for example to read a chosen passage, to sing, to play a musical instrument or to offer some of the prayers.

Announcement of the death

The funeral director will normally offer to arrange for an announcement of the death of a child to be placed in either national or local newspapers or both, but the family may prefer to do this themselves, or not to make such an announcement at all.

The announcement may be brief and factual with the name and date of death only, or it may include as many details as the parents choose for example, date of birth, illness or accident, place of death, names of family members, funeral arrangements, in memoriam requests, suitable quotations or messages. There are however restrictions in most national daily newspapers.

If this is to be the chief way of notifying those who wish to attend the funeral, it is helpful to place the notice with the newspaper as soon as conveniently possible. Many details of the arrangements may be omitted in the announcement by simply giving the name and telephone number of the funeral director.

Suggested forms for national and local papers

National

BROWN John Alan, beloved son of Mary and Paul, dear brother of Samantha and Joshua, died peacefully on November 1st at home, aged 11 years. Funeral enquiries: F. H. Bloggs and Son, 3, West Street, Markham, Oxon. Tel 01865 333812.

Local

BROWN John Alan, beloved son of Mary and Paul, dear brother of Samantha and Joshua and much loved grandson of Edith, Joe and Jane; died peacefully on November 1st at his home after a courageous and fun-filled life, aged 11 years. Funeral on Thursday November 6th at 3 p.m. at All Saints Church, Littleham, Oxon., and afterwards at St Edmund's School, Markham. Family flowers only but donations welcomed for The Muscular Dystrophy Group to F. H. Bloggs and Son, Funeral Directors, 3, West Street, Markham, Oxon. 0X3 7EW.

A bright light has gone out of our lives.

Registering the death

In the United Kingdom the death of all children (including unborn babies over 24 weeks gestation) must be registered with the Registrar of Births, Deaths and Marriages within 5 days of death. Parents may choose to register their child's death themselves, but if they do not wish to do so, or are unable, the task can be delegated to a number of other people, including a person present at the death or a relative present at the death, attending in the last illness or residing in the district where the death occurred.

The doctor who has seen the child after death will provide a signed medical certificate of cause of death or stillbirth to the informant who will register the death. Legible writing on the part of the doctor may save unnecessary distress when

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presenting the certificate to the registrar. If the doctor is uncertain as to the cause of death, or has not seen the child in the past 14 days, or if death occurs within 24 h of surgery or as a result of suspicious circumstances, the doctor is not permitted to issue a death certificate but must inform the coroner. The coroner will then make the necessary arrangements to ascertain the cause of death.

The certificate is taken to the registrar's office in the sub-district in which the death took place. The doctor will probably be able to give the necessary information about the place and office hours of the registrar. Alternatively the telephone directory entry is headed Registration of Births, Deaths and Marriages. An appointment is sometimes required, and in any case it is wise to check office hours before setting out.

A simple question and answer interview will take place between the registrar and the person registering the death. Information needed is:

certificate of the cause of death;
date and place of death;
the child's full name, home address, the date and place of birth;
the parents full names, home addresses and occupations.

The correct entry is made in the register and signed by the informant and the registrar. Copies of the entry can be obtained for a small fee.

The registrar will supply the certificate of burial or cremation which will be required by the funeral director.

Planning the funeral

Many people think that it is good to get the funeral over as soon as possible. Some religions and cultures require that the funeral and disposal of the body happens within 1 or 2 days of death.

For others, however, it may feel better to allow sufficient time to plan all the details of the funeral without a feeling of hurry. For many families the optimum time for the funeral to take place is about 5 days after the death of their child. There is more likelihood that relatives and friends who wish to attend the funeral will be able to do so, given more notice.

The choice of the day and time will partly depend on the availability of the services and amenities needed.

Choosing the coffin

The funeral director will make the parents aware of the range of designs from which they can choose a coffin. White coffins are normally available for children as well as various types of wooden or wood veneer coffins. Parents may choose the lining for the coffin.

A family may make or supply a coffin themselves but it must be strong enough and adequate for the purpose. Some people may prefer to call the coffin a casket, the definition being a place for treasure .

Flowers

In some cultures, the gift of flowers is one way of expressing love and respect for the person who has died and sympathy for the child's family. Flowers can be bought and then sent by the florist to the funeral director or the child's home, according to the family's wish with a message and the names of those sending them. Alternatively the person giving the flowers can bring them to the home or to the funeral. The funeral director will normally give the family a list of those who sent flowers and will collect the flower cards for the family if asked to do so.

The family may prefer that only garden or wild flowers are given. Sometimes those who come to the funeral may be invited to bring a single flower and to put it on the coffin or into the grave. On other occasions only the immediate family will give flowers asking that friends and relatives express their love and sympathy in other ways.

It is not uncommon to see the new grave of a child and the area surrounding it carpeted with gifts of flowers, some of them in the form of elaborate arrangements a teddy bear, a football or the name of the child for example. If this is comforting to the family then it is entirely appropriate regardless of the cost.

Gifts to charity in memory of a child

Some families will decide to ask relatives and friends to make a gift in memory of the child rather than give flowers at the time of the funeral.

These gifts might be to a favourite charity; to research into the disease which has caused the death of the child; to the place where the child has been cared for; to an organisation or family support group which has meant a lot to the family concerned; or to any other good cause which they may choose.

The suggestion that such gifts may be made in memory of the child may be placed in newspaper announcements. The funeral director will also convey this wish to any who enquire. He will, if asked, receive cheques, forwarding the final sum to the appropriate charity.

The funeral director will list those who contribute so that the family may be fully informed.

Specific items in memory of a child

Parents may choose to collect money to buy furniture or equipment for a place or organisation which has special links with their child.

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Gifts towards the planting of a tree or a shrub is another way in which parents may ask others to mark the life and death of their child, living, growing things being symbolic and bringing comfort as time goes by.

An award at school or a trust fund is another way of keeping the memory of their child alive. Occasionally a charity is set up in memory of the child, but the formalising of such a major project is not often completed at this very early stage of bereavement.

The choice between burial or cremation

For many parents this is an agonising decision to have to make: to consign the body of their beloved child either to the earth or to flames is too painful even to contemplate.

If burial is being considered, it is important to discover where a plot is available. This may be in ground belonging to a church or in a local authority burial ground or one which is privately owned.

It is possible to arrange for burial to take place on private land, for example in a garden or field, or in woodland, following discussion with local planning authorities. Permission cannot be denied but the exact position may have to be negotiated. Problems can arise if the family subsequently considers moving house.

If cremation is being considered the superintendent of a crematorium is usually willing to meet members of a newly bereaved family and to answer their questions openly and honestly, often allaying misplaced fears or misconceptions. Families can be assured that the ashes they will be given are the ashes of their child and that they are never mixed with those of anyone else.

Some crematoria do not make any charge in the case of a child under the age of sixteen.

Burial

Those who choose burial often do so because they want to be able to visit the child's grave and to tend it, like a small garden. Some find that the grave becomes a place where they feel particularly close to their son or daughter, and where they can talk to the child. It may be comforting to the family if it is possible for their child to be buried in a family grave, for example with grandparents.

If a child is to be buried the funeral service will normally take place in a church or other building belonging to the relevant faith or in a cemetery chapel, though it can take place in any other appropriate place of the parents choosing. Parents may choose whether the burial itself (the interment) is attended by relatives and friends or whether only the immediate family is present, others being invited to remain inside the building until the burial ceremony is complete.

The coffin is usually lowered into the grave by the funeral director and his assistants, but this may be done by family members. According to some traditions handfuls of earth may be thrown on to the coffin by some or all present. The grave will not normally be filled in until family and friends have left but, if they so wish, they may fill in the grave themselves. The grave may be lined with flowers or with artificial grass ahead of time. Sometimes flowers are thrown on to the coffin after it has been lowered into the ground.

As at all stages, we have come to believe that it is better to include other children in all that is happening. There are many ways of involving them. For example, one imaginative idea is to invite them to set helium balloons free as they stand by the grave, the number of balloons according to the age of the child who has died.

Parents may like to consider reserving the plot next to their child, or buying a family plot.

The headstone

It will probably be some months before a headstone can be placed on the grave so there is plenty of time to choose this and the words which will be inscribed on it.

If the grave is in a churchyard the agreement of the ordained minister acting on behalf of the diocese is needed concerning the choice of material used and the words of the inscription. Similarly, if the grave is in a municipal cemetery the agreement of the appropriate authority must be obtained.

Cremation

If cremation is chosen, a certificate of examination corroborated by two doctors must be completed in addition to the medical certificate of the cause of death. The funeral director will supply a form applying for cremation, to be completed and signed by the next of kin.

The service preceding cremation may take place in the crematorium chapel. Before choosing this option however, the parents should know that the service cannot normally take longer than 30 min, including the time taken for the congregation to enter and leave the chapel. The coffin may be placed in the crematorium chapel before the congregation is invited to enter, or it may be carried in procession with the congregation, or be brought in after the congregation has assembled.

Another option is to hold the main part of the service in a church or other suitable place, using the crematorium chapel only for the brief words of committal. The family may choose for the committal to be private so that only those invited will attend. A further possibility is for the cremation to take place following a brief service of committal in the crematorium chapel attended by the family only or those they may invite; indeed it is

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possible for the cremation to be private, without family or friends being present. The ashes may then be placed in a casket and taken to a suitable place where a less hurried funeral service can follow. However, this may not be possible until the following day.

It would seem to be helpful in accepting the painful reality of what has happened for the coffin to disappear from sight before the conclusion of the service, but occasionally this is too traumatic for the parents. They may wish to leave the chapel while the coffin is still present and in this, as in all things, their wishes must be respected.

Next of kin, usually only two people, are allowed to be present when the coffin is placed in the cremator. While this is the norm for those who practice Hinduism it is unusual for others.

Small babies are often cremated at the end of the day, allowing the heat of the fire to become less intense.

Ashes

Ashes may be collected from the crematorium by the funeral director or the family, by arrangement, usually at least 24 h after the cremation. The parents may choose to scatter the ashes in the grounds of the crematorium or in a beautiful place, on the sea, in the hills, or in a place of particular significance for the child.

Another possibility is to bury the ashes. This can be done in the grounds of the crematorium, in a churchyard, or anywhere of the parents choosing, perhaps in their own garden. It is also possible to bury the ashes in a casket which can be supplied for the purpose by the funeral director. Sometimes the place of burial may be marked by a stone or a plaque, or by a shrub or tree in memory of the child. Families are often invited to plant a rose in the grounds of the crematorium.

Decisions concerning ashes do not need to be made immediately. The crematorium or funeral director will normally agree to take care of them, as will some churches, sometimes for a considerable length of time, before a decision need be reached. Alternatively, the family may take the ashes home in a suitable container supplied by the crematorium or funeral director and make their decision at a later date.

Placing the child in the coffin

The child's body will be placed in the coffin at a time arranged between the parents and the funeral director. The mother and father may wish to lift the child into the coffin themselves, continuing their tending and caring to the very last, but they may prefer that this is done by someone else.

The coffin may be left open until immediately before the funeral or throughout the funeral, or the lid may be fitted at an earlier stage if it seems advisable and if the parents are in full agreement.

Some may like to keep a lock of the child's hair, or a hand-print or foot-print of their child, before the coffin is closed.

If photographs have not already been taken, this is the last opportunity. It may not be the parents' wish to have photographs. Other parents may find it is a long time before they can look at the photographs, or they may choose never to look at them, but if they have been taken, then they have the choice.

Placing things with the child in the coffin

It may seem right to the family to place favourite toys or possessions treasured by the child in the coffin. A religious symbol, a flower, a photograph or a gift may also seem appropriate.

Thoughts and wishes, words which a mother or father, a brother or sister may have wanted to say but have not been able to until now, a prayer or a poem these may be placed in the coffin with the child. Sometimes the child's best friends will like to write a letter to place in the coffin.

Some families will not think it helpful or appropriate to do any of these things.

If the child's body is to be cremated there are restrictions as to objects which may remain in the coffin when the lid is fitted. These restrictions normally include metal and man-made fibres. The funeral director will offer advice if asked.

Dressing for the funeral

Culture, social custom or the practice of a particular religion may require that those attending a funeral, or at least the closest relatives, will wear distinctive clothing. In Western culture this had traditionally been black. In Eastern practice it is often white. Many young families will not be expected to conform to a particular way of dressing but have freedom of choice. Some may specifically ask that mourners do not wear black.

All that matters is that the family feels comfortable with their choice. One factor they may well feel is the most important is whether their child would have approved of their choice.

Non-Christian customs surrounding death

Families who practice a religion such as Judaism, Islam, Hinduism or Buddhism may be well-informed about the rituals surrounding death and the funeral rites approved by the particular faith to which they belong. For others, support in finding information will be welcomed and local faith leaders can be a valuable resource. Families will have differing needs

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within the spectrum of their faith and each family's personal views should be sought as they may differ from staff's expectations. The following information may also be helpful (please also see cross reference: Rituals and Religion, Chapter 16 Brown).

Judaism

Strictly Orthodox Jews may place a feather over the nostrils and the mouth of the dead person for about 8 min following death.

It is general practice in orthodox Judaism for the nearest relative of the same sex as the child to

gently close the eyes and mouth and place the arms by the side of the body;
bind the lower jaw;
remove tubes and instruments;
place the body on the floor with the feet towards the door;
wrap the body in a plain white sheet;
light a candle and place it by the head.

In the absence of a relative anyone may perform these rites but orthodox families may prefer them to wear gloves when handling the child's body. It may be impossible to contact relatives in an Orthodox Jewish family on the Sabbath (sun-down on Friday to sun-down on Saturday).

Ritual cleansing and preparation of the body will be done by the community. Embalming is not permitted. Mourners do not view the body.

The body is never left alone. A watcher may stay with the body from the time of death until the burial. The dead are buried as soon as possible, often on the day of death or within 24 h after death. Orthodox Jews do not permit cremation but progressive Jews sometimes do, as do nonobservant Jews.

Post-mortem examination is forbidden for Orthodox Jews except where required by civil law.

Organ transplant is rarely agreed to, with the exception of the cornea.

Over the following year a formal pattern of mourning provides the bereaved with support in the community. The shivah, or 7-day period of formal mourning, follows the burial and the bereaved remain at home and receive visitors. Prayers are said in the home each evening. A central part of the prayers is the recitation of the Kaddish said or sung by the close male relatives. After the period of shivah, Kaddish is said at communal prayers by the male relatives for the period up to stone setting which is 11 months to a year after the funeral.

Islam

The word Islam means submission to the will of God. Its followers are Muslims. The attitude of Muslims towards death is strongly influenced by their belief that suffering and death are part of God's will for them.

The dying child should face Mecca (south-east in the United Kingdom). Members of the family may pray at the bedside, whispering into the ear of the child. The child should never be left unclothed as nakedness is deeply shocking to Muslims.

Non-Muslims should not touch the body after death. If it is essential that they do, they should wear disposable gloves. With the family's permission:

the eyes are closed and the limbs straightened
the head is turned towards the right shoulder
the body remains unwashed and is wrapped in a plain white sheet.

At death the family will normally perform the necessary rites and recite the prayers. They will appreciate privacy and access to water during this time. They will:

close the eyes and straighten the limbs
tie the feet together at the big toes
bandage the face to keep the mouth closed
take the body home or to the mosque for ritual washing
place camphor in the armpits and orifices
dress the body in white garments.

Strictly speaking a woman is forbidden to touch a dead body for 40 days after the delivery of her baby. If her baby or older child dies within this period any encouragement to hold the dead child should be very tentative.

Post-mortem examinations are not generally accepted except where required by civil law. It is important to assure the family that all the organs removed will be returned to the body for burial.

Organ donation is not generally acceptable.

Burial takes place within 24 h.

UK law requires the use of a coffin, which is contrary to Islamic law, and for this and other reasons some families may decide to take their child's body to their country of origin.

Duty binds relatives and friends in a supportive programme of mourning. The family remains at home receiving visitors for the first 3 days. Formal mourning continues for 1 month and anniversary remembrances remain important.

Hinduism

Hinduism involves the worship of many gods, each one being a manifestation of the Supreme Being.

There are many different practices concerning the rites surrounding death within the Hindu religion.

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There is a common belief in reincarnation. A dying child is often given holy water from the River Ganges. A thread is sometimes tied around the child's neck or wrist as a sign of blessing and it should not be removed. Non-Hindus may touch the body after death provided they wear gloves or the body is wrapped in a plain sheet. There is likely to be opposition to post-mortem examinations but they are permitted if required by civil law. Organ donation is permitted.

Hindus are normally cremated, but children under the age of 4 years are usually buried, as it is believed that they are without sin and will not corrupt the earth. Ideally the cremation or burial takes place on the day of death but this may prove impossible in the United Kingdom. It is important for close relatives to witness the body entering the cremator.

A mourning period is observed and a remembrance ceremony may be held on the anniversary of the death.

Sikhism

Sikhs believe in reincarnation. The family is normally responsible for the last offices. A non-Sikh may close the eyes, straighten the limbs and wrap the body in a plain white sheet. The family will wash and dress the body. There are usually no religious objections to post-mortem examination. Organ donation is allowed.

Cremation will take place as quickly as possible, the exception being for an infant dying within a few days of birth, where burial is the norm. The closest relatives may want to be present when the coffin is placed in the cremator, the nearest equivalent to lighting the funeral pyre. The ashes are scattered on a river or in the sea. The family remains at home receiving visitors for the period of mourning.

Buddhism

Buddhists do not worship a godhead. The Buddha is revered as an example to his followers. The teaching is based on non-violence and compassion for all forms of life, with great emphasis on spiritual growth.

There is a belief in rebirth, not reincarnation. In each life, learning from past experience, the Buddhist progresses towards the state of perfection known as nirvana. This is a state of mind within the individual rather than a place beyond to be reached. Because of the importance of the state of mind, medications which may make clear thinking difficult are sometimes unacceptable.

There are no special requirements in caring for the body of the child. It is wrapped in a sheet without emblems. Post-mortem examination is accepted where necessary. Organ donation is permitted. When a child dies special prayers are said for between 3 and 7 days before burial or cremation. Cremation is more usual. The ceremony is conducted by a relative or by a Buddhist monk (bhikku) or nun (sister). Practices and ritual vary greatly within different Buddhist groups, but there is a universally calm acceptance of death.

The funeral service and afterwards

Suggested structure for a Christian funeral service

The bidding

Welcoming those present

Suggesting the reasons for the gathering

remembering
giving thanks
praying for the child and the family
saying goodbye
grieving.

The Word

From scripture

From non-scriptural sources prose, poetry

An Address or Homily

Prayer

For the child

For those who grieve

In penitence

In thanksgiving

(This may take the form of a celebration of the Eucharist.)

The commendation

Praying for God's blessing on the child in the life beyond death Saying goodbye

The committal

Lowering the coffin into the grave or moving it towards the cremator.

Psalms, hymns, songs may be chosen and used in any part of the service. Sometimes music is played, either taped or live. It is not wrong to include a child's favourite nursery rhymes or a piece of pop or classical music if this speaks to those present of the child they knew and continue to love.

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An alternative style of funeral service

A much less structured form of service may be chosen. An example is the style usually adopted by the Society of Friends (Quakers) in which silence is shared, interspersed with words offered by anyone who feels drawn to speak, read or pray as a tribute or expression of love for the one who has died.

The committal is the only essential part of the funeral rite, anything else being added from choice.

Some families have found it very helpful to be invited by the officiant at the funeral to place things which remind them of their child on a table near the coffin, for example a photograph, a favourite item of clothing, a well-loved toy. Each member of the family may be invited to bring something for the occasion and to take it home with them afterwards.

If the funeral takes place in a church or other suitable place, everyone present may like to light a candle, either during the service or at the end of the service when the coffin has been taken out. This is not normally possible in a crematorium chapel.

The service sheet

The service sheet is not only of practical help to those taking part in the funeral service but is a personal memento for them. It can also be given or sent to those who are unable to be present. There may be a member of the family or a friend who will type the service sheet, which can then be photocopied or printed. If not, the funeral director can arrange this.

The cover may have a design, a drawing or photographs on it. As well as the full name of the child (and sometimes the pet name by which he or she has been known), the dates of birth and death are often printed. The family may choose a quotation to be included on the front cover. The words of the service will follow. An invitation to a reception or gathering of friends after the service is sometimes included at the end of the service sheet. The family may choose to include thanks to individuals or groups of people who have helped in the care of their child.

Transporting the coffin

The coffin may be carried in a hearse provided by the funeral director. However the family may choose to use their own car or to borrow one from a friend. An ordinary estate car may be more appropriate for a small coffin. The car does not have to be black; white or another colour may be more suitable.

In some places it is traditional to use a horse-drawn hearse. The funeral director may walk in front of the hearse for part of the journey. In a village the coffin may sometimes be carried without needing to use a hearse or car. The cortege may pause as a mark of respect at particular places, for example outside the child's home if the journey has begun somewhere else.

It may be important for the family to decide with the funeral director whether the coffin will be carried or wheeled into the place where the funeral service will take place and who will do this.

Carrying the coffin into church the night before the funeral

In some Christian traditions this has been common practice for centuries. To some parents it may be comforting as if it symbolises that their child is a step closer on the journey to heaven.

It may provide an opportunity for the father, both parents or other members of the immediate family to carry the coffin into church themselves. For some the ordeal of doing this in front of the whole congregation at the funeral service may be too great.

Simple prayers may be offered as the child is brought into the church. The coffin, depending on the size, may be placed on a table or on a bier, in a suitable place in the church. Flowers may be placed on the coffin or around it. A candle, perhaps the Easter candle, may be left burning close to the coffin. Light in the darkness can be comforting on a practical as well as a symbolic level.

This occasion may be attended only by the parents and the minister of religion or by anyone the parents may invite. If the building is normally locked overnight, it may be kind to offer to lend the key to the family.

Recording the service

A tape recording of the funeral service may be a source of great consolation in the months and years which follow. There may well be times when members of the family find it too painful to listen to the tape, some may never want to do so, but if a recording has been made then they have the choice. This is something which a friend or relative may be asked to do, or the funeral director may be asked to arrange for the recording to be made.

Who comes to the funeral?

Some parents may choose to give an open invitation to anyone who would like to attend the funeral. Others may choose to keep some part of it private, for example:

bringing the coffin into church the night before
committal of the body at the crematorium
burial at the grave side.

They may invite others to join them for the remainder of the service. Another possibility is to have a private funeral

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service followed, at a later date, by a memorial service or service of thanksgiving.

Many adults worry about whether it is right to bring children brothers, sisters, cousins, friends to the funeral service. This is a very personal decision but, where at all possible, it does seem sensible to ask the child himself or herself. To be included usually feels better than to be excluded, even in the presence of raw grief, but some will have their own reasons for not wanting to be there.

If, for whatever reason, children are not present at the funeral, it may be important for them to be doing something significant at the time of the funeral so that they do not feel left out, guilty or empty. This could be visiting a special place, listening to favourite music, drawing or painting with someone with whom they feel comfortable.

It may be difficult for the family to remember who was present at the funeral, so those who attend may be asked to sign a sheet of paper or a book, either when they arrive before the service begins or before they leave. The funeral director or a friend will be responsible for this if asked.

Reception after the funeral

Some families will want to invite those who attend the funeral to return to the family home or the house of a relative or friend for refreshments afterwards. Some may prefer to meet in a hotel, pub or restaurant. Preparing the food and drink may be one way in which relatives and friends can help. Alternatively a catering firm may be employed.

People often find it hard to know what to say on such an occasion. They should not be afraid of talking about the child who has died.

Some parents may prefer to be alone or with the immediate family only after the service and relatives and friends will understand and respect this.

What friends can do

Practical ways in which friends may help

These are many and varied. A basic list is given, to which many suggested ways of helping may be added.

calling on the family
cooking for them
offering to wash clothes or bed linen
doing some housework
shopping
driving
being with other children in the family
informing named relatives or friends of the death and the funeral arrangements
preparing refreshments to be offered to relatives and friends after the funeral
making a tape recording of the funeral service
listening and not doing anything.

As the weeks go by the needs of the bereaved family will often become greater rather than less (see also Bereavement, Chapter 15 Davies). The most urgent need will be for someone who will listen without giving advice or referring to any experience they themselves may have had, except in so far as it may serve to convince the grieving person that he or she is normal in grieving this way. Anger is an integral part of grief and the friend must be prepared to be a receptacle for that anger without necessarily colluding with it. One subject bereaved people often want to talk about is the person who has died, yet so often it is the last subject other people want to broach. It is helpful to give the bereaved person the opportunity of talking about the child who has died.

Grief is an exhausting process, exhausting physically, mentally, emotionally and spiritually. Remembering this, good friends will find many ways of helping through the months and years of acute bereavement. Grief following the death of a child may go on getting worse for 2 years or more. In a society which expects you to be back to normal' in six weeks, the reality can quickly leave the child's family believing they are either sick or abnormal Am I going mad?

Loss of identity or role is very painful realising that you are no longer a parent, or that you have become an only child .

Friends who will stay alongside, recognising the right of the grieving person to grieve in his or her own way, knowing that no two people, however loving or close they may be, grieve in the same way, are invaluable. It is usually a help rather than a hindrance when a friend shows his or her own true feelings. Bereaved parents or brothers or sisters know that other people are embarrassed or frightened of saying the wrong thing. It is often enough to say, I am so very sorry , or, How are you?' and then wait long enough to hear the honest answer.

Many families welcome friends recognition of the anniversaries of the child's birth and death and difficult times such as Christmas, Mothers Day or Fathers Day. Friends need not fear reminding the family; they will not have forgotten and may well feel comforted and supported that others have not forgotten either.

Unhelpful things to say or do

Euphemisms falling asleep , passed away , lost are normally unhelpful. He has died is true and straightforward and not offensive.

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In all the pain and confusion it is easy to resort to clich s when talking to newly bereaved families. For example:

God took her because she was so special.

Jesus has called him to be a little sunbeam

God needed another baby angel.

It's a mercy with his handicap he could never have lived a full life.'

Time will heal.

At least you have got the other children.

You're young enough to have more.

She's gone to sleep with Jesus.

These examples could be multiplied. There may be elements of truth in some of the remarks, but those who grieve the death of their children are unlikely to find any help and comfort in them, unless they themselves introduce the idea.

The anguish of separation is overwhelming. It feels as if half of them has been amputated. Can they survive?

Belief in God may bring comfort and consolation but it may also bring confusion and anger. There are far more questions than answers. It is unhelpful to try to fill the yawning abyss of unknowing with easy answers.

The real friend will stay alongside, often silent, through the unknowing, the anger and accusations, the guilt, the if-onlys. Guilt is powerful and overwhelming about surviving beyond the death of your child; about not preventing that death or even in some way causing it; guilt the first time you laugh or live through an hour without thinking about your child. Raw grief is neither reasonable nor rational all the time. It operates at a level much deeper than the intellect.

Do not tell people how they should be grieving

To stay alongside a grieving person means listening to the same part of the story again and again without trying to correct it. Each person has his or her own way of grieving. Even those who are very close to one another will grieve differently. In the state of exhaustion brought about by grief it may or may not be helpful to suggest a game of tennis or joining a drama group. Do not make people feel that they ought to do something because it would do you good .

Do not avoid coming face to face with a bereaved person out of fear or embarrassment. If you cannot find the right words then a hug, a touch or even a smile will help.

Deciding what to do with clothes, toys and other things which have belonged to the child, and rearranging the bedroom should only be done when the parents are ready. There is no hurry. It may be years rather than days or months before they are ready. This is normal.

Conclusion

The early hours and days following the death of a child are crucial in affecting the unfolding grief that ensues in the months and years to come. Nothing can take away the searing anguish, so unpredictable in its course. The heartache and bleak misery are all-invasive. Nothing will ever be the same again even if, given time, it is possible to adjust to a different way of living. At least if there has been the opportunity and the encouragement to do things their way at the time of death and the days following the family will be able to look back in the knowledge that, in a horrendously imperfect world, they ensured that everything was as perfect as it could be for their beloved child, to the very last.