Preparing for the future - Advance Care Planning
Advance care planning (ACP) is deciding what kind of care we want in the future. It helps ensure that everyone caring for us knows what matters to us. These conversations with loved ones and healthcare teams can be difficult, so many of us put them off.
We want to help everyone have open discussions about death and dying so we can all plan for our future care. Making plans ahead of time, or at least considering potential care arrangements and medical treatments, can provide peace of mind.
This is important because you told us it is important to you.
Through the engagement that helped shape our Adult Palliative and End of Life Care Strategy, we identified that communities need to be supported to talk about death and dying. We held a number of ‘Let’s talk about death and dying workshops’ and you said,
“Advance Care Planning needs to be more accessible” and “linked with the Living Well Plan to allow people with dementia to talk about their future wishes and care needs long before they are at a point of needing it”.
Alison Massey, Interim Transformation and System Commissioning Partner – Community for NHS Shropshire, Telford and Wrekin said: “Working with people who had experience of the death of someone they love, it was clear that having conversations about dying long before their loved ones’ health deteriorated would have been helpful to them.”
Anyone can complete an Advance Care Plan. For those of us with a life limiting condition or awareness that we are coming towards the end of our lives, it can become more important to have our wishes known. We may want to say what care and treatment we want, where we want to be cared for and where we want to die.
There are different ways that we can make our wishes known as explained in this short video.
In Shropshire, Telford and Wrekin an Advance Care Plan developed by local healthcare professionals, is being used. The Advance Care Plan can be completed by the person it refers to, carers, family, or the healthcare team.
This article explains how Advance Care Plans have been used: Severn Hospice to present Advance Care Planning success at the 2023 Palliative Care Conference - NHS Shropshire, Telford and Wrekin (shropshiretelfordandwrekin.nhs.uk)
The End section of the Advance Care Plan covers the information needed in a ‘RESPECT’ form.
Some of us will have completed the ‘Recommended Summary Plan for Emergency Care and Treatment’, shortened to the ‘RESPECT’ form.
This is a short plan about what should happen if a person needs health care or treatment in an emergency. It is called ReSPECT for short. ReSPECT plans are made by a patient and healthcare workers working together. They talk about what the person wants and what the choices may be. ReSPECT is a way of making sure that healthcare workers know your choices in an emergency. But if you do not have a ReSPECT plan, the healthcare workers looking after you must still do all they can to find out what you want in an emergency. For further information go to www.respectprocess.org.uk
ReSPECT form:
To download the ReSPECT form, click here.
*This also includes a discussion guide and more information on what the patient does next, now that they have a completed ReSPECT form.
More resources:
- ReSPECT Patient Leaflet
- ReSPECT Poster
- ReSPECT Information for Families Leaflet
- ReSPECT Patient Guide for Young People
Easy Read:
- ReSPECT Easy Read – introduction
- ReSPECT Easy Read – making decisions
- ReSPECT Easy Read - making a ReSPECT Plan
- ReSPECT Easy Read – two stories Mark and John
- ReSPECT Easy Read – further information
If you complete either an Advance Care Plan or a ReSPECT form, or both, this will help plan for future care.
The ‘Living Plan’ is a booklet helping those of us living with dementia to express what is enjoyed and what really matters. It helps us ‘live as well as we can’ and helps family, friends, supporters, and our healthcare team understand us. It is different from a clinical care plan because it enables us to talk about ourselves.
The Living Plan includes a section which prompts thinking about our wishes surrounding death and dying. It asks us to complete important things like Power of Attorney, making a will and completing a RESPECT form. It is the link between this section and enabling us to have those conversations around death and dying which is important to this project’s work.
“We designed the new Living Plan to enable people affected by dementia to record in one place things they want other people to know about them. But it also includes nudges to encourage people to think about practical things that may become really important to them and their family and friends, such as Advance Care Planning and the Respect form. It’s important to think and talk about what you would like to happen in the event of you being unable to make decisions yourself.”
George Rook, Chair of LEAP, the Lived Experience Advisory Panel, Dementia UK, and Chair of the Shropshire and Telford Health Economy Steering Group
Over 2023 and 2024, a group of 34 people with lived experience and supporting professionals came together to creatively explore solutions for the challenges surrounding ACP. The group’s work led to free training sessions being offered to community and charity group leaders, ACP being recorded on the GP record keeping system EMIS, and increased awareness of ACP among community groups.
NHS Shropshire Telford and Wrekin is very grateful to the co-design team for their willingness to share experiences, their energy and hard work. Read a summary of the project by clicking on the following link ACP co-design project 2023-2024.