Out of the Box
From an inspirational picture of a coffin on social media, Abi explores end of life care… and beyond.
I've had a viral infection over the past 3 weeks or so. The first week I didn't want to do much, the second I worked my way through box sets, and the third... well I got to thinking as you do.
I thought about my life, I thought about others. I thought about the mess my house is and how I should be an amazing actress or possibly scientist... time had pretty much given me cabin fever! I flicked in and out of social media and reflected upon a young lady who died recently of cancer.
I was captured by the images of her life posted on social media. Her strength, as her story unfolded.
Her last wishes were spectacular. A trip away whilst she could, a tattoo or two, concerts – friends, a new pet, being cared for and dying at home, and a splendid decoration of her coffin with which she had had input in.
What hit me the most was the planning of it all. Flicking back over the pictures, it was so her, so person centred. A celebration as she went out, and after she had gone.
Why am I saying this?
I'm telling you this because it's easy to believe those wonderful things should be there to celebrate and console the young. But every life is as precious and should be cherished as it is released from this world as we well know, allowing people choice in their care and personal wishes approaching and into death.
A report in the journal BMC Medicine forecasts that palliative care in England and Wales will increase by 42% by 2040. This means that an additional 160,00 people per year will require this care by 2040. With increased demand, Health and Social Care will need to improve its approach to individual support and care.
End of Life Care
Whether in a hospital setting, or Nursing/ Care home , it is important to recognise the transition into end of life care.
Interestingly CQC are considering in their closed consultation moving prompts relating to end of life care to ‘Responsive’ from ‘caring’. ‘Responsive’ suggests, like litmus, being ready to change and adapt to the situation that presents.
CQC go on to ask:
- ‘How are people supported at the end of their life to have a comfortable, dignified and pain-free death?’ and (the bit I think is a bit of a mouthful!)
- ‘Are people’s preferences, choices and wishes for their end of life care and where they wish to die, including in relation to their protected equality characteristics, spiritual and cultural needs, clearly recorded, communicated, kept under review and acted on?’
Easier said than done
Yes, most things are. It is not always possible to find out exactly what people wish beyond a dignified death, but there is a wealth of information to help enhance the care of individuals at the end of their life, planning and putting processes in place to do this well before that day and for those with varying capacity.
Here are a set of helpful resources to support you
Resource 1: Conversations For Life help equip health and social care workers talk about end of life care including workshops and resources. ‘The Conversation Game’ Conversationsforlife.co.uk say ‘The game is a set of 36 cards, each card with a short statement of things people often cite as being important to them in the last weeks or months of life… To play the game (in the ‘solitaire’ mode) the individual sorts the cards and ranks priorities about what’s important to them, and then discusses or explains to a friend or family member why they sorted them the way they did.’
Resource 2: ‘Dying well at home: the case for integrated working’. For those outside of a Nursing/Care home setting, this useful guide from SCIE gives profound insight into ‘Dying a good death’ and what should be considered.
Resource 3: Residential Care Homes Steps End of Life Care Tool Kit. A very helpful practical guide to end of life care. St Christopher’s have put together an extremely useful toolkit including a form to help plan and stimulate conversation about end of life care – extremely sensitive and open to wishes. I wholly recommend a look at this or residential care homes.
Resource 4: Information for patients/residents is an important link in the chain. ‘Planning for your future care’ put together by The National Council for Palliative Care, The NHS, and The University of Nottingham.
Resource 5: Capacity, care planning and advance care planning in life-limiting illness: An enlightening guide by the National End of Life Care Programme for Health and Social Care staff who are involved in care planning and supporting those in palliative/end of life care. It looks at the importance of assessing a person’s capacity to make particular decisions about their care and treatment and of acting in the best interests of those who are assessed as lacking capacity to make these decisions. It also draws out the important differences and relationship between care planning and advance care planning.
A picture paints a thousand words
When we think of people’s wishes, beyond physical care - the personal touches, one thing missing from a lot of resource is pictures. When people plan weddings, parties and births, they look at things for inspiration… just a thought, and one you may wish to explore.
As health and care workers, you have a precious mandate to look after those in life and sometimes in death. To treat the person whether living or dead with respect, and as far as practicable to carry out their wishes. QCS are on hand with information provided by QCS policies, blogs and articles to support you in this.
Let's get planning!
I show my daughter the beautiful colourful coffin and scroll through pictures and comments. 'What, you get to choose what happens?' She said. I think on that for a moment. The way she says it actually sounds positive. 'Yes', I say. ‘Oh good’, She exclaims running off with a box of felt tips and some sparkly paper.
*All information is correct at the time of publishing