End of life - Ideas for practice: Case study

End of life care - Holistic palliative care

Kate is a 51 year old woman with late stage ovarian cancer. She is a single mother with five children aged 24, 23, 17, 15 and 11. She is also guardian for her 13 year-old grandson.

Kate first became known to the palliative care team before her diagnosis two years ago when her daughter was at the hospice dying from ovarian cancer. The family had refused all support from the palliative care social work team before her daughter’s admission. They met briefly with a member of the team following her death for assistance with practical concerns such as arranging a funeral. Kate spoke of having had bad experiences with social services in the past. This made it very difficult for the social work team at the hospice to engage with her and shortly after this meeting Kate cut all contact with the team.

Kate was diagnosed with advanced ovarian cancer only months after her daughter’s death and was referred to the palliative care team. Initially she agreed to see only the nurse specialist. However, after a few months some finance and legal issues arose concerning the children so Kate agreed to see a palliative care social worker. Luckily this was the same member of team she had seen after her daughter’s death and who she remembered had been helpful at the time.

Palliative care social workers are usually non-statutory so are less likely to be pressurised to complete a piece of work and close the case. The social worker involved was therefore able to phone weekly over a period of time to check how the family were and if they needed anything. Slowly, Kate agreed to the social worker visiting and she gradually built a relationship with Kate and her eldest daughter Louise, her main carer and, increasingly, carer for her younger siblings. Kate introduced the social worker to the younger children and the worker was able to support Kate in discussions about her illness, death and dying and the future. With Kate’s permission she was also able to work with the children’s schools, giving support and advice to the teaching staff. Louise was offered separate support as a carer but declined this. However, she began to talk a little to the social worker and the district nurse.

The weekly calls and regular visits continued for nearly a year. Kate deteriorated gradually and became frailer, however she remained determined to be there for her children and to make sure they would be looked after once she was gone.

Kate was assisted to complete a statement confirming that she wanted Louise to have guardianship for all the children including her grandson when she died. Kate was reassured that as none of the children’s fathers expressed an interest in being their full-time carers, it was unlikely that there would be any issues about Louise caring for the family. However, the guardianship order for Kate’s grandson would need to be legally transferred to Louise and this meant the involvement of local authority social workers. After much persuasion, Kate agreed to a referral on the condition that the palliative care social worker continued to be involved. Due to Louise caring for all the children, a full family assessment was needed alongside allocation to a kinship social worker to assist with the handover of guardianship.

The palliative care social worker was able to explain the roles of all involved to the family and although they were still worried, the first visit went well. After one more visit the assessment officer closed the case reporting that the children were well cared for and Louise would be the most appropriate person to care for them in the future. Louise and her nephew (Kate’s grandson) carried on working with the kinship social worker re: guardianship. During this time, housing was also contacted on Kate’s request and thanks to a very helpful housing officer who argued their case the tenancy of her council flat was transferred to Louise’s name.

This work meant that Kate did not have to worry about who would look after her children and whether they would have a roof over their heads after her death. During this time a home visit from prison for Kate’s eldest son was also arranged when Kate was able to tell him how ill she was and say goodbye.

As Kate’s condition deteriorated the palliative care team started to discuss with her where she would like to die. Kate wanted to be at home for as long as possible but wanted to go to the hospice for her last few days as she did not want to die at home in front of her children. This was recorded in her advance decision.

Kate recently phoned the team saying she felt very unwell and tired and that she would like to come into the hospice as she thought she might be dying.

Kate came in on Friday and seemed to relax as soon as she arrived. She died peacefully two days later with her family around her.

The palliative care social worker met with Louise and the younger children the day after Kate’s death. Initially the family will need support with practical issues such as Kate’s funeral and the transfer of benefits to Louise’s name. The children are all helping to arrange the funeral and all their schools have been informed.

Bereavement support from the team will continue for as long as needed but at present the family are doing relatively well, slowly coming to terms with Kate’s death, all knowing they followed her wishes, did all they could to support her and were with her when she died.