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.

Planning End of Life Care

As its Dying Matters Awareness Week I would like to talk to you about the importance of getting your elderly loved ones to make plans for their end of life care. I have seen what happens when people don’t plan for having an accident, a stroke or an illness such as dementia, which leaves them unable to make decisions such as whether they want life prolonging treatment and how and where they would like to be treated.

This issue is very important to me and although I will be unable to control what happens to me if I find myself in this situation, I want to choose how I live the end of my life and how my funeral is conducted. I have therefore taken out a Lasting Power of Attorney for both my property and affairs and my health and well-being. I am also  one of the 3 in 10 people who have made a will. Why on earth would I want to leave my hard earned dosh to the Government?

Holy spirit dove flies in blue sky, bright light shines from heaven, christian symbol, holy bible story

I would much rather address these matters while I am relatively young and have no intention of dying, although  like everyone else I have no control over that whatsoever. If I leave it too late and am no longer able to make my own decisions, I will not be able to make these plans myself.  Now I can relax, forget about the Lasting Powers of Attorney which will only be able to be used if I am unfortunate enough to loose my marbles so there is no danger of my sons (who are my attorneys)  selling  my home and emigrating with my loot.

Although it is possible to download the LPA forms and will template  from the Internet  and do it yourself I chose not to do this as unintentional mistakes can be made by not considering all eventualities. If you have made your own will and LPAs this only comes to light when it is too late to do anything about it. So find yourself a good solicitor. You will be glad you did.

Here is an example of a situation  I remember from my days of working on night duty at the local hospital. that illustrates my point nicely. I have made up their names for anonymity. To be honest I can’t remember them anyway!

Example of  how failing to plan can cause conflict in a family

Steve lived near his father and they had an especially close relationship. When his father had a stroke Steve was asked whether or not he wanted his father to be resuscitated if his condition deteriorated. Steve told me that his father valued his quality of life and felt that if it was seriously compromised, he would not want his life to be prolonged. However, his brother disagreed and as you can imagine, the situation could have caused a serious conflict within the family. Luckily his father’s condition improved and a decision did not have to be made.

Another example is a personal one. When my father became terminally ill, I knew exactly what his wishes were and had power of attorney to back up decisions I made on his behalf. He died peacefully at home listening to his favourite music, being assured it was OK to let go and reassured that my brother, sister and I would look after our Mother. I cannot stress enough the comfort it gave me to know I was carrying out his wishes just as he would have wanted.

A letter of wishes

I have one last thing to do to ensure my choices are taken into account, I am writing a letter of wishes to be go with my papers, so that my sons know exactly what I want to happen if I have an accident become seriously ill or lose the ability to make decisions for any other reason. Also where and how I want to live if I am unable to make my own choices, how I would like my body disposed of at the end of my life and what I want to happen afterwards.

We are all going to die

As a society we tend to avoid talking about these matters. However, death is a part of life and if they are faced, discussed and planned for we can forget about them, know our wishes will be heeded and acted upon and that we have saved the person or people we have left behind the responsibility of guessing our choices. Don’t leave it too late

Millions leave it too late to discuss end of life wishes. Don’t let an older person you care about be one of them.! The following website offers lots of good information to help you. Dying Matters.Org