Advance Care Planning: transforming aspirations to actions from high level principles to valuable plans

Written by Clare Fuller, Advanced Care Planning

Advance Care Planning is an often-used term that is frequently misunderstood. In principle, it sounds a good idea, but what exactly is Advance Care Planning? When should it be started, how do you begin a conversation? And how do you make sense of the multitude of Advance Care Planning forms that are available?

In this blog I’ll explain exactly what Advance Care Planning is. I’ll share a framework I have developed to make sense of Advance Care Planning and explore when and when and how to start Important Conversations. Throughout the blog I have included action points, things to consider in the areas you work.

What is Advance Care Planning?

Advance Care Planning is a process rather than a form, a series of conversations not a one-off event and very much part of everyday life not just something associated in later life. An output of Advance Care Planning could be the creation of an Advance Care Plan and there is no set way to do this. Different areas will have different forms; having an understanding the components of Advance Care Planning enables you to effectively work with all clients, whatever stage of illness they are at or area they live in.

NHSE published the Universal Principles for Advance Care Planning in March 2022. The guidance sets out universal, high-level principles for an approach to Advance Care Planning; what the guidance doesn’t do is provide a how to on translating these principles into action.

I have created a framework called “Getting Your House in Order” to translate broad principles into plans. The framework enables you to consider Advance Care Planning at every stage of life and can apply to any health condition.

Getting Your House in Order: a framework for Advance Care Planning

Getting Your House in Order invites you to think about Advance Care Planning as a house built on the foundation of What Matters Most to a person. The windows of the house represent different components of Advance Care Planning.

I’ll explain now what the components mean in more detail, and how this might translate to your area of work.

What you do want

Translating what you do want into practice means thinking about creating a statement of wishes and preferences, it means thinking about things that give you joy, purpose and meaning. A statement of wishes and preferences is not a legal document, but it has great value in aligning care to a person’s values.

• Action: Do you have a template for a statement of wishes and preferences? Can you access a locally available template?

What you don’t want

Many people are clear about treatments that would not be acceptable to them in any circumstances. To translate this wish into practice requires an Advance Decision to Refuse Treatment (ADRT). An ADRT does not need registration but must be drafted accurately.

• Action: Do you have a template available for a client to create an Advance Decision to Refuse Treatment? Can you signpost clients to organisations for support in making an ADRT?

Who would speak for you

This component of Advance Care Planning refers to Lasting Power of Attorney. A Lasting Power of Attorney is a legal document enabling a person to nominate a one or more people to support them to make decisions or make decisions on their behalf if they lose capacity to do so themselves.

• Your legacy
• End of life care

Much of Advance Care Planning is part of normal life planning, however there are plans associated specifically with End-of-Life Care or care in the final years, months or days of life and these are within the window for End of Life Care. The sun and the cloud can be used to represent hoping for the best but preparing for the rest.

I have added a window for End of Life Care. Looking in detail at the End of Life Care window, it can be explored from a clinical view in terms of years, months, weeks and days or to the public reflecting on the chapters of an illness.

The sun and the cloud can be used to represent hoping for the best but preparing for the rest. The door represents proactive planning; if an event comes knocking on your door you are ready and not caught unawares.

Advance Care Planning and an Advance Care Plan are related concepts, this blog explores what each term means and the intersection between them.

Advance Care Planning

Advance Care Planning is a process, not a document. It is a comprehensive approach to thinking about, discussing, and documenting preferences and values for future care, and the focus of Advance Care Planning will vary according to a person’s life circumstance.

NHSE published the Universal Principles for Advance Care Planning in March 2022 in which six key principles are identified. The guidance sets out universal principles for a personalised approach to Advance Care Planning with an intent to promote a “consistent national approach” to ‘what good looks like’ in advance care planning in England”.

The guidance provides high level principles and sets out an approach, what it doesn’t do is provide a how to guide of how to “do” Advance Care Planning

You can read the guidance in full here.

The guidance provides high level principles and sets out an approach, what it doesn’t do is provide a how to guide of how to “do” Advance Care Planning. Indeed, it can’t because it is so different for everyone.

I have found that the terms Advance Care Planning and Advance Care Plan are often misunderstood by healthcare professionals, either because it’s thought to be just associated with end of life or it’s just too complicated. It is the same with the members of the public too – and not really a dinner table conversation. I am on a mission to improve professional understanding, raise public awareness and normalise discussion about Advance Care Planning and have created a simple infographic to explain the elements of Advance Care Planning. The concept can be adapted for any healthcare setting or personal circumstance and I’ll explain how.

I’ll start by saying again there is no one right way to do Advance Care Planning; there are right principles (outlined above) and I offer the following framework as a step to creating more concrete plans from principles. This is the second iteration of the Getting Your House in Order infographic and no doubt it will become more refined over time.

Advance Care Planning: Getting your house in order

You can read a little more about the framework in the blog Advance Care Planning: Getting Your House in Order. The basic idea is to demonstrate the basis for Advance Care Planning through a foundation of What Matters Most, then to break down components of Advance Care Planning into different windows. I’ll give a detailed look through each window at the free online teaching Advance Care Planning: normalising planning ahead for everyone in March next year (if you would like a session for your team or organisation contact me. The beauty and simplicity of the framework is it can be adapted for any healthcare setting or any person.

So Advance Care Planning is a process, a series of discussions, something that changes over time and a normal part of life. Organ donation, making a will or Lasting Power of Attorney are all parts of Advance Care Planning. I have blogged previously about Advance Care Planning and End of Life Care and set out what might be considered in the last months and days of life of Advance care Planning.

Advance Care Plan

An Advance Care Plan is simply the output of an Advance Care Planning discussion, again there is not one way of doing an Advance Care Plan. We don’t have a universally used national template, so my call to action is to find out what is used in your area. An Advance Care Plan will typically contain personal information, a statement of things you want (possibly called preferences and wishes), space to capture who to contact in an emergency, (and what to do, this may be in the form of a ReSPECT or a Treatment Escalation Plan). An Advance Care Plan may also have specific places to write down how you would like care at the very end of life.

I have started my Advance Care Plan, basically pulling together my Advance Care Planning to date which includes the following:

• A statement of what Matters Most to Me, my values in life & things that give my life meaning and quality
• A decision on Organ Donation
• Lasting Power of Attorney (for both Property & Finance and Health & Welfare)
• Will
• Tentative funeral planning
• Beginning of a Digital Legacy

I hope this demonstrates how Advance Care Planning slots into normal life planning, the list above doesn’t need a life limiting diagnosis to initiate.

Writing this blog led me to have a look at what ChatGPT had to say about the differences between Advance Care Planning and an Advance Care Plan – it’s not bad!

I entered: “write a blog about an advance care plan and advance care planning explaining the differences between them” and you can see what the result was.

ChatGPT: Write a blog about an advance care plan and advance care planning explaining the differences between them

In summary, Advance Care Planning is a process. It is built on a foundation of what matters most and can be considered as including what you do want, what you don’t want, who would speak for you and your legacy. Part of, but by not all, Advance Care Planning is about care towards the end of life. An advance Care Plan is an output of Advance Care Planning and will be different for everyone.

It really is never too soon to start Advance Care Planning, or getting your house in order, but it can be too late.