Person-Centred End of Life Care

Background

Mrs Cook aged 93 was living life to the full. She enjoyed good health, lived independently and drove her car to various social activities, including circle dancing, short mat bowls and games of scrabble with her friends.

Then, a few months ago everything changed. She was admitted to hospital with severe abdominal pain and subsequently diagnosed as having a large tumor with an anabscess attached. She had an operation to remove the tumor and a drain was attached to the abscess. Mrs Cook’s condition was diagnosed as terminal and she was fast tracked for CHC funding for end of life care.

Mrs Cook refused chemotherapy and radiotherapy and was admitted to a nursing home. Her solicitor contacted Relative Matters and asked us to visit as she had expressed a wish to return home.

The Client’s Perspective

When I visited Mrs Cook I was expecting to find a very sick woman wanting to go home to die. How wrong I was. Despite her pallor, she was alert and very clear about what she did and didn’t want. She felt that at her age it was inevitable she was going to die some time, but in the meantime, she didn’t want to languish in a nursing home with very little stimulation while she was waiting.

Care Planning

Care planning thus began for her to return home. Working with the CHC team was not easy. At first, we were asked if we could persuade her to stay in the nursing home which we vehemently resisted, stating that Mrs Cook had a right to die in a place of her own choosing.

One of our OT consultants was deployed to undertake a home visit to identify equipment that Mrs Cook would need when she returned home and to liaise with the Community Equipment service, to source it. A physiotherapy assessment was also arranged to help with Mrs Cook’s mobility.

Obstacles

The CHC Team agreed to continue funding at home until her review, provided Mrs Cook’s GP declared her fit to return home. This did not happen, as her abscess was still leaking and another had appeared. After a course of antibiotics there was a little improvement but her GP still refused to declare her fit to return home. After discussing the matter fully with Relative Matters, Mrs Cook decided to continue with her plan to return home, without her GP’s sanction.

The next obstacle was that the Continuing Healthcare Team would only allow visits from one of their providers for personal care to get Mrs Cook up and dressed and help her retire to bed, at times that would fit in with their contract. However, Mrs Cook was able to get herself washed and dressed independently and didn’t want a visit before 10am. What she wanted was help with shopping, light housework as she already had a cleaner once a week, and to go out for lunch once or twice a week as she was used to doing before her illness. All of which CHC would not fund. Following a discussion about the pros and cons of discontinuing CHC funding and paying for a care provider of her own choosing, Mrs Cook chose the latter.

The care Plan

Relative Matters arranged for a district nurse to visit daily to change Mrs Cook’s dressing and drain for her abscess. Also, a flexible care package for 10 hours week with a local home care agency that could deliver the care plan made by Mrs Cook and Relative Matters, a weekly delivery of frozen meals and for a keysafe and call alarm to be installed, with a personal response service, as Mrs Cook did not have anyone to act as responders.

The care provider was advised about the need for flexibility and for Mrs Cook to make decisions about what she needed on a day to day basis. Also, that there would come a time when the package would need to be increased.

A volunteer from the local hospice had been arranged to visit Mrs Cook once a week and she was advised to remind Mrs Cook that she could attend the hospice day servicewhen she was ready.

Discharge Day

Mrs cook returned home on the day we planned and when visited a week later to see how she was and whether the care plan needed tweaking, she was brimming with happiness to be home. Instead of the anticipated increase in her care package she wanted us to remove lunchtime and weekend calls as she felt she no longer needed them.

Conclusion

Mrs Cook was able to pay for her own care which gave her more choice. However, without Relative Matters or a similar service with a multi-discilinary team, who would have supported Mrs Cook with the detailed work necessary to achieve her return home?CHC would not have supported her as most of the intervention she required was not to meet a health need and Social Services would not have got involved as Mrs Cook wasfunded by NHS CHC and in any event, would only offer limited support as shefunds her own care.

Time will tell how long Mrs Cook has left to live in her own home and it was a privilege and immensely satisfying to help her continue her end of life journey, on her own terms.

Relative Matters Ltd

Relative Matters is an independent consultancy for later life providing a comprehensive social work and occupational therapy service for families, solicitors, deputies and financial advisors supporting people who fund their own care. We provide professional information and advice on a range of issues, evidence based care and mental capacity assessments, arrange personalised care at home or in carefully selected care homes and design bespoke care solutions, drawing together a variety of options from our professional training and extensive experience of working with older people.