Time of death and loss

Dandelions blowing in the wind in a meadow

Caring to the end

A guide to end of life care and beyond for unpaid carers in Surrey

Time of death and loss

Here are the things you need to consider as you prepare for your child’s final days, how you prepare to say goodbye to your child, and what happens following their death, including:

Planning for end of life

  • A member of your child’s care team will approach you to discuss what you and your child would like to happen as they become more seriously ill and approach their last days. This will be an incredibly difficult time for you but you should get openness, honesty and full support from all the professionals around you. You will all be working together to develop a plan for end of life and this is often referred to as an Advance Care Plan. Discussions with professionals should include talking with you about your child having a natural death. This is where treatments and equipment will be withdrawn so that you child can die peacefully and without pain. For more information about what will be covered in such a plan go to Emergency/Advance Care Plan.
  • One area of information that many families request is in relation to organ or tissue donation. If your child is in hospital, high dependency unit or intensive care unit it is possible a transplant coordinator or other member of the medical team will approach you to discuss you or your child’s views of organ or tissue donation. Some families have indicated that they are sad the issue hasn’t been raised with them and have then learned too late that it may have been a possibility. So you may find you have to raise the issue with a member of your child’s team and this may particularly be the case if your child is not in hospital.
  • It’s important you and your family are able to make the most of the last weeks and days of your child’s life and your child, depending on their age, may have their own wishes and goals to achieve before they die. They may want to create a memory book with you or be involved in planning their own memorial service. Don’t completely abandon normal routine as this can make your child feel out of control and unprotected but at the same time make each remaining day count.
  • The Children’s Cancer and Leukaemia Group have produced a helpful guide for parents facing the death of their child.

Things to think about:

  1. Consider with your child and family who you want to be present at your child’s death.
  2. Who do you want to take care of other children in your family and what backup plan do you need in place in case you cannot get hold of them?
  3. Discuss with your child, family and care team where your child’s place of death should be. You may well wish your child to die at home or in the hospice. You should be fully supported to achieve your choice and know who to access and how to access the necessary support. Know which professionals to contact and what you do if you cannot contact them.
  4. Decide in advance on how to let wider family and friends know when your child has died.

At the time of death

  • It is vital that you take all the time you need to say goodbye to your child. You may want to bathe them and dress them in their favourite outfit. You may want to brush their hair and keep a lock. You can make a handprint or footprint or take a final photograph of them. You could play their favourite music, surround them with their favourite toys or light a candle. 
  • You can hold your child and spend as long as you need with them. You can have others with you or spend time with your child on your own. There is no right or wrong way to ‘see’ or say goodbye to your child and it’s important that you do not feel under pressure to ‘behave’ in any particular way. 

Immediately following the death of your child

The death of your child will need to be verified, certificated and registered in the same way as an adult’s death.  Go to At Time of Death for further information about how to register the death. The death must be registered within 5 days. If you feel registering the death of your child is too much for you then you can ask a relative or anyone who was present at the death to do this for you. It is worth noting that if you do this it may delay the funeral as the necessary certificates will need to be posted to you rather than handed to you personally.

A post mortem can also cause a delay in issuing the death certificate, however if your child had a life limiting condition and death was expected it is unlikely a post mortem will be considered necessary. Your GP, hospice or hospital doctor can confirm this and issue a certificate straight away. 

There are three different circumstances where a post mortem may be carried out:

  1. Where the doctor cannot be sure of the cause of death. 
  2. The doctor may ask if you would consent to a post mortem because such an examination may help to provide more information about your child’s condition or treatment for the future. You may also be asked to consent to retention for research or teaching purposes of a particular organ or tissue sample.
  3. You may request a post mortem if you feel it would be helpful to understand your child’s condition and cause of death.

If a death is referred to the coroner for one of the above reasons then the coroner will send the death certificate direct to the registrar who will send you the Certificate of Registration of Death and the Certificate (needed if you are applying for help with funeral costs or if accessing any child’s savings or trust funds) and Certificate for Burial and Cremation (which enables funeral to be held).

In England there is a child death review process for every child up to the age of 18.  This process is designed to collect information about each child and the circumstances of their death in the form of a short report which is then provided to hospitals, local health services, schools, police etc to make sure they are clear about what caused the death, what support and treatment was offered to the family after the child’s death. If you want to find out more about the process talk to a professional you feel you have a good relationship with. 

Take your time to choose the right funeral director. A local religious advisor, children’s hospice or hospital can give names of a director with experience of children’s death and funerals as well as directors that do not charge or charge minimal cost for a child’s funeral

Watching your child being taken by the funeral director can be a very painful experience as can going to see your child at their chapel of rest. However, it can be a chance for all the family to get to grips with what has happened as well as a chance to talk to your child, touch him or her and carry out any religious practices that are important to you and your child. 

You can also choose to bring your child’s body back to your home until the funeral or have their body brought back to the home the night before the funeral. Discuss with the funeral director what is best for you. Chapel practices vary in relation to use of make- up and changes to how your child looks. Again talk with the funeral director about your preferences. 

Telling others

After your child has died you will need to contact their school to let them know.  Someone else can do this for you if you prefer. The school may want to have a special assembly for your child or to arrange a more permanent memorial for your child eg. plant a tree or have a school bench with a plaque. Having a liaison person at the school might be useful to suggest particularly if you would like your wishes as a family to be reflected in a special assembly or school memorial service. Having a liaison person can also be particularly useful if you have other children at the school as they may need support. 

Your child’s friends will have been an important part of your child’s life so they may want to help with the funeral, visit or share memories with you. They may wish to write poems, play music or sing songs at either an assembly or at the funeral service.  You can decide what feels right for you and your family.

It is helpful to write to everyone who may send our appointments or may have your child’s name on a list as it is upsetting to receive notification of appointments no longer required. You can nominate a family member or close friend to ring around instead on your behalf. Pull together a checklist. This might include:

  1. School
  2. Hospital and clinics
  3. GP
  4. Dentist
  5. Health Visitor
  6. Clubs your child attended

Having told friends and relatives about your child’s death you are likely to be overwhelmed with messages, letters and cards. Although you may feel it is important to reply, it can also be very difficult to face writing personal letters to all of these.  Think about sending out a simple ‘thank you’ card. You could even design this yourself (or your other children) and put a photo of your child inside.

The funeral, celebration or memorial service

  • Organising your child’s funeral and making lots of different decisions will be an extremely difficult task so ask for help from those close to you. You may have already had time to think about or plan for the funeral with your child and/or your family. Always do what feels right for you and your family not anyone else. There are no rules.
  • A funeral and celebration or memorial service can be a day to remember your child and feel the support of friends and relatives around you, making you realise how many lives your child’s life touched. It can be a great comfort to give people the opportunity to say goodbye to your child.
  • You may find yourself throwing yourself into a frenzy of activity organising the funeral, pretending to be cheerful and fully in control. Sometimes you will find it is you comforting other mourners as you try to stay strong. This is a common reaction and it does not mean you are not grieving.
  • A number of funeral directors operate a policy of not charging for their professional services when the deceased is a child up to 16 years. As well as making minimal or no charge for their professional services, they are able to tailor funerals to children and families. This includes: different styles of coffins, special memory boxes for children to store treasures to remind them of their brother or sister who has died, and special chapels of rest.
  • Help with the cost of a funeral in the UK is available from the Social Fund for those who receive certain benefits. To apply, you will need Form SF200, which is available from your funeral director, benefits office or through your child’s hospital’s CLIC Sargent Social Care Worker.  
  • Whilst many funeral directors, the clergy and most celebrants do not charge fees, there are other funeral related expenses that bereaved parents struggle to find.  Financial support, advice and guidance is available from Child Funeral Charity.
  • For more general information on what to do when your child dies have a look at the funeral guide.

Things to think about:

  1. What type of service do I want for my child? You can have a religious service or you may prefer a private service and a thanksgiving service for the life of your child at a later time.
  2. What sort of coffin (you may prefer to use the term ‘casket’) is right for my child.  
  3.  Do I want the service to be recorded and photographs taken which I can then appreciate at a later date?
  4. Should I have a visitors’ book for people to sign or a book of remembrance for people to write something about my child?  
  5. Perhaps memories of my child could be written on a card during the service and then left in a basket so I can read them at a later date.
  6.  Should my child be buried or cremated? Did my child have strong views about this or do my other children have strong views? Would my child have liked to be buried near trees because they loved the woods? Is there another special place my child loved where we can scatter their ashes? 
  7. Where should the service be and who should lead it? You may prefer a chapel to a church, you could have the service at home or in a special place. The service can be religious, non-religious or humanitarian. Remember there are no rules.
  8. Who do I want to speak at the service? Friends and family can speak at the service to help make the day feel really personal to your child. What about service sheets?  These can be a good way of recording the service, can be printed professionally, handwritten or photocopied. They could include a picture of your child and tributes to those who were involved in the care of your child.
  9. Can I decorate the venue in a way which reflects my child and their personality? How shall I and the guests dress? Perhaps your child loved a certain colour which you could request. Some families request no one wears black and funeral directors will also wear lighter colours if you ask for this. All of these issues are personal choices.
  10. Should there be flowers or donations to a specified charity? You can set up a giving website for a special charity connected to your child as a lasting tribute.
  11. Should my other children be present, especially if they are young? It might be a painful experience but they may be more frightened if they are not there. They could come to part of the service and you could have another relative on standby to take them out if they feel they don’t want to stay.
  12. What about the gathering after the funeral? You and your family may wish to be alone after your child’s funeral or you may like relatives and close friends to be around. A gathering can sometimes be a way of bringing together those who have been involved in your child’s life and can be in a hotel, a pub or at home.

Coping with grief

Losing a child is particularly cruel and shocking because it feels against the natural order of things, in a world where the old make way for the young. There is no right or wrong way to grieve and no bereavement is ever the same. Even in the closest of families, the sense of isolation each person may feel, can be overwhelming for them.  You will find your own way of getting through the early days but whatever you feel or however you manage will probably be ‘normal’. It’s important to respect your own instincts and those of others in your family about grieving.  

You may find it helpful to talk to a close friend, a counselling organisation or a professional including:

  1. Community Children’s nurse
  2. Health visitor
  3. Children’s hospice staff
  4. Spiritual and pastoral advisors
  5. Bereavement counsellor

There are a number of helpful charities specialising in bereavement support for parents and families, including Compassionate Friends. Go to their leaflet “Grief of the Newly Bereaved” Other helpful specialist organisations that can support bereaved parents include:

Telephone numbers and websites for these organisations are available in Directory and Further Information