Caring for someone with a terminal illness

Practical things after death

When someone dies many decisions and arrangements must be made, many of them difficult at a time of grief. For instance Janet said she had felt numb as she tried to think about the immediate practical things she would have to do. Katie said she had been given a booklet that explained what to do. 

Initially, a medical certificate showing the cause of death has to be obtained. When a patient dies in hospital the certificate will be signed by a doctor and issued by the hospital’s bereavement office. When a patient dies elsewhere, the death still has to be certified by a doctor. Although a community nurse was present when Simon’s wife died at home they had to call the GP in to certify the death. Sarah found the family doctor most helpful when her mother died although she found it strange that he couldn’t put ‘old age’ as a cause of death instead of her medical conditions.

Sometimes it is necessary for a post mortem to be carried out. Mary was offered a private post mortem for her husband so she could find out where his cancer had originated. There were a lot of forms which her brother-in-law helped to complete.

The death must then be registered with the local registrar of births and deaths; in England and Wales within five days. Janet found the registrar very sympathetic and helpful when she registered her partner’s death. The registrar spent time with Janet talking through practical details and advising her how many copies of documents she would need. While Fiona and her sister both registered their mother’s death they decided to share sorting out other paperwork.

After someone dies the dead person’s ‘estate’ has to be to sorted out, involving a lot of paperwork. A person’s ‘estate’ is their money, property and belongings at death. A solicitor can be engaged to help with this, but at a cost. Mary said she felt overwhelmed by all the paperwork she had to deal with. Fiona and her sister found it helpful that they already knew certain things that would have to be done when their mother died, and they shared the paperwork. Others had been grateful for help with this from extended family and friends.

When a patient dies in hospital the family is invited to view the body in the hospital mortuary. Sarah had never seen a dead body before she and the family went to view her dad in the hospital mortuary. Katie found it comforting to know that her sister-in-law’s body was at the undertakers across the road and she visited several times. Sue didn’t want to see her father’s body in the chapel of rest although her mother found it a great comfort to do so. Jane felt it was important that her children should see their father’s body so they would know for certain he was dead and to allay any fears about what he might look like.

 The only legal requirement in the UK regarding funerals is that the death is certified and registered and the body properly taken care of, by either burial or cremation. Funeral ceremonies in the UK take many forms. They differ according to a preference for burial or cremation, and in line with any religious beliefs or affiliation. People can organise it with or without the help of a funeral director. The Natural Death Centre is a charitable project which gives independent funeral advice with information on all types of funeral. It is particularly helpful for those who wish to have an inexpensive, family-organised, and environmentally friendly funeral. 

Some patients had discussed with the carer before their death how they wanted their body to be disposed of and what they wanted at their funeral. This could be comforting for the carer as they could arrange everything knowing that it was what the deceased person wanted and it could avoid potential conflict between family members who might have wanted to do things differently. Sometimes only certain aspects of the funeral had been specified in advance so families had to choose others based on their knowledge of the person’s tastes. Some could also draw on their recollections of conversations from long before the person had been approaching death.

Ruth’s mother had sorted out her funeral and paid for it in advance. The deceased person’s bank will release funds to settle funeral costs even after their account has been frozen, so long as it contains sufficient funds. Janet found the funeral directors helpful and feels fortunate that she knew exactly what her partner had wanted for her funeral. Val didn’t know her husband’s wishes regarding his funeral, but found he had underlined tracts in his bible and these were used at his funeral. David organised his wife’s funeral using clues from before she died; it was not overly religious and had music she liked. Cassie’s father did not leave any specific wishes for his funeral only that he wanted to be cremated. Cassie and her mother arranged the funeral together, choosing music they knew her dad loved. It was difficult deciding who should carry the coffin but her mother chose people she felt would be honoured to be coffin-bearers.

Poppy describes her father as, ‘a very unconventional and eccentric soul who never conformed’ and so his funeral wishes were not traditional. He did not want anyone to attend the crematorium but wanted a garden party for all the family and friends. David (Interview 35) felt it was important to take his sons to their mother’s funeral. The wake after her funeral reflected her wishes to have a social thing rather than a ‘standing around glum-looking thing’ so there were lots of flowers, lots of great food and lots of people including ‘children dashing around having fun’. Theadora arranged a traditional Jewish funeral that was attended by about 300 people. As Jewish funerals traditionally take place very shortly after the death, she had to rely on people passing on the message about her mother’s death quickly amongst their networks.

Although Susan made all the arrangements for her mother’s funeral, she did not feel the need to attend herself. Janet’s partner’s parents were unable to attend her funeral due to a medical emergency, so Janet arranged for the service to be recorded for them. Heather had arranged for a friend to give the eulogy at her husband’s funeral, but unfortunately he was stuck in traffic and missed it. Heather had given a copy to someone else but they had forgotten to bring it to the church. Heather remembers ‘an awful silence’ when the eulogy should have been read. Peter (Interview 33) found it a great comfort to hear things about his daughter’s life that they hadn’t known, from her former school and college friends who attended her funeral.

After a cremation families are given a choice of what to do with the ashes. They can be kept or disposed of by the undertaker or given to the carer to keep at home until they decide what to do with them. Jacqui had her husband’s ashes scattered where they had done their courting. Val hasn’t decided what she wants to do with her husband’s ashes and is concerned about the costs of a casket and burial.

Keeping occupied helped some cope with the immediate time after the funeral. Although most people managed to inform family and friends of the death, after the funeral there were often others who had to be informed. Janet recalls responding to many letters and cards of condolence.

Any equipment that had been obtained on loan to support patient care in the home had to be returned. Sometimes this was collected very shortly after the death. The nurses arranged for all the equipment Cassie had for her father to be removed within two days, and then a week later the nurses came to collect any medications that were left. In other cases the equipment was not taken away quickly enough. Roger (Interview 32) found his garage was ‘stacked up with equipment’ which he struggled to get collected, until he contacted the local Patient Advice and Liaison Service (PALS) who arranged collection within a couple of hours. Heather found that the oxygen was collected very quickly after her husband’s death, but on the day of his funeral the hospital bed supplier rang to arrange to service the bed rather than take it away.

Carers also had to sort out the personal effects of the patient. For John (Interview 12), collecting all his son’s things from university was very sad and brought back memories of Tim as a student, who loved university. Susan had to clear out her mother’s house after her death. She found over 2000 photographs which her husband is sorting through for the family. For some carers who have shared a home with the patient, there is no need to rush sorting through possessions. Georgina has been gently going through her mother’s things and although she thinks she may be keeping too much, she feels she has ‘all the time in the world to go through things’.

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Last reviewed December 2017.


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