End of life - Ideas for practice: Case study

End of life care at home

Dorothy, known as Doll, was 83 when first referred to St. Luke’s Hospice at Home service in Basildon. She lived alone in a small flat and was independent, slowly mobile and coping well with her rectal cancer and stoma. She was known to her Macmillan nurse who felt she needed extra support. Following our assessment we agreed to ring her regularly and offer a weekly visit for support and company. She was well supported by her daughter Mary, who lived and worked in London, and Doll often spent her weekends with Mary. Hospice at Home referred her to the Day Hospice which Doll attended for six months before being discharged. Mary was referred to the carers support group at the hospice and she attended monthly.

After a year, Doll’s health slowly deteriorated. Her legs were swollen, which hampered her mobility, her stoma was prolapsed and she needed help with the bag. She was referred to social services for a care package. The hospice still continued to visit and increased visits to twice a week with the occasional evening to support Mary. Mary was still very involved and Doll continued to visit Mary’s home while she was still able, enjoying the company of her extended family. Support from the community nurses and the Macmillan team for symptom control also continued.

Mary had the reassurance of ringing OneResponse any time, day or night for Support Assessment and Advice – with both phone advice and rapid response capability, so did not feel alone caring for Doll.

In October 2011 Doll had the first of several strokes, leaving her weakened and with a much reduced memory. After an admission, Doll’s care team decided that she had reached the full potential of her rehabilitation and that she was at great risk of further strokes. This was because the nature of her cancer prevented her continuing with blood-thinning medication due to the risk of haemorrhage. Doll expressed the wish to stay at home and while the option of a care home was discussed it was not what she wanted. Mary supported this decision and moved into Doll’s small flat to care for her.

Doll needed a lot of emotional support as her memory problems prevented her from retaining information about her condition and she became distressed when not able to follow her usual routine. Mary also needed a lot of support around managing her symptoms from St Luke’s and the community and Macmillan teams. Eventually, after a further stroke at home she was not able to take oral medication and her condition deteriorated. Her cancer was also progressing and she needed daily dressing by the community nurses. A syringe driver was set up and additional respite and night support was offered to Mary. All the community teams communicated with each other to ensure that Doll’s wishes for her Preferred Place of Care were met. Mary found OneResponse really useful because it meant she could discuss any problems at any time and not worry about being a nuisance or a worry.

Doll died peacefully at home at the end of November 2011. Mary was in touch with the hospice after her death. She expressed how lost she felt after such a long commitment to her beloved mum. However, she felt that she had fulfilled her duty to her and could not have done so without all the help she received, especially from Hospice at Home. Mary has been referred to the bereavement service at the hospice and will receive support, either here or from a similar service near to her home.

Doll’s referral to Hospice at Home meant that she had the benefit of the same care team from the early stages of her illness, when she only needed minimal support, through to the end period of her life, when she needed intensive support. The team helped Doll through some very difficult times, particularly when her mobility was very limited, and were also on hand to support her family in their bereavement.

Gill Booth, Service Manager of St. Luke’s Hospice at Home