Planning for the future

As we work to take forward Compassionate Cymru we are taking the theme of ‘What matters most to you?’ to help organise our work. We know people who want to help and support those in their community will not all want or be able to help in the same way.
Just as we know those who want to help will not help in the same ways, those who need some help will not all want the same kind of help, at the same time, in the course of their lives. We think asking the question ‘What matters most to you?’ helps to identify the kind of help you might like or need and helps to match up the help being offered with what you want most.

Making plans for your care and the end of your life when you’re healthy means there is less to think about if you get sick. It is never too soon to think about what you would like to happen if you become ill, or if your illness gets worse.

Most people will have heard about making a will and your will can include details about the type of funeral arrangements you would like but you can also make a separate plan about this if you prefer.

Another practical aspect of planning for the end of your life is identifying who you would like to nominate to take care of your finances, or to make decisions for you about your health and welfare if you become unable to do this for yourself. In Wales the documents you need to complete for these decisions to be recorded are called (LPAs)

Here is where you can find out about these: https://www.gov.uk/power-of-attorney

Those are the practical, financial aspects which can give you and your relatives peace of mind once they are sorted out.

It is also really important to think about how you would like to be cared for. Where would you ideally want to be cared for? What decisions would you want to make about your care? These include issues like whether you would want to be resuscitated using CPR if your heart stopped beating.

There are many issues to consider and it’s important to realise that you can change your plan for your care as many times as you want. It is also important to understand that you can record your wishes in a document which should be updated with any changes and shared with some important people. We are providing links below which will help with these decisions and documents.

We have provided information below from the website of ‘What matters most? conversations’. We work closely with organisations which share the values of compassionate communities and you can find the fullest information if you visit the website but here are some important pointers

A personal & compassionate community approach to care and treatment planning

Many people are thinking about these issues, especially since the pandemic and there is a recent piece of work carried out by a group of charities and organisations which sets out a Charter for thinking about these things.

Here is the Charter and some of the points from the website and you can read the materials in full there and see some other helpful information around this topic.

Recent experience during the COVID-19 pandemic has highlighted problems with advance care planning (ACP) conversations. Often such conversations don’t take place, or when they do, they are hurried and medically focussed. Rather than being life-affirming and positive they tend to concentrate on place of death and what treatment you are prepared to receive. The many organisations involved in this project believe that a series of normal conversations with families, friends and occasionally professionals regarding your interests and wishes for the future would help us all. That way, bringing end of life issues to the table will seem less scary and more natural.

To help clarify the group’s aims, we have developed a ‘Charter’. It is not long or complicated. We encourage you to read, reflect, and get your organisation to adopt the Charter. We would love to hear from you. After all, talking about important things in life and what ‘what matters to you’ can surely never be wrong?

Introduction

Planning ahead is an important life task, and it remains important until the end of life. Planning involves a range of preferences about life choices, some of which involve preferences about care and medical treatments.

Towards the end of life, providing care that matches what matters most to people becomes increasingly important. Discussions about what matters most can begin within individuals’ networks of family and friends, and be picked up by health and social care professionals to ensure that the care and treatments offered at the end of life continue to respect what matters most to that person. What matters most has implications for the person who is ill, their families and friends. This means decisions about future care and treatment need to be known by those involved in the person’s care and support at home, as well as the professionals involved.

Discussion and recording of preferences about future medical treatments is known as Advance Care Planning (ACP). It has gained wide acceptance in health care as a way of discovering people’s wishes about their care towards the end of life, but has become very focused on what NOT to do: what interventions to avoid, what treatments not to begin. While these wishes are important, knowing what treatment people don’t want towards the end of life doesn’t help us to wrap care around individuals in a way that matches what they DO want. It is time to change the conversation.

As an advisory group with representation from prominent healthcare organisations with experience of discussing ACP with patients, coupled with the evidence and reflection on the public’s experience and perception of care planning, we have created this Charter for Planning Ahead: What Matters To Me that promotes a reframing of ACP conversations for both the public and health and social care professionals alike.

What matters most Charter Principles

What matters conversations

What matters most conversations are part of a voluntary process for planning and decision making that can be held at any point in life.
These conversations can be had at any time of life from childhood to the last years of life, during health or illness, at important anniversaries. People can (and do) change their minds about decisions they make depending on the circumstances in which they find themselves, so ‘What matters’ conversations need to be ongoing, involve different supporters and are not a single opportunity, or solely health-focused.
We can use them to promote a culture of openness about living as well as possible for the whole of life, including living with life-limiting illness. Encouraging a culture in our society that supports conversations about what matters most to us during living and dying as part of the natural cycle of life, allowing those that wish to discuss death or their Advance Care Plans the acceptance, support and opportunity to do so.
What Matters conversations are centred on individuals and their significant relationships rather than being owned by healthcare. They encourage an individual to take ownership of what matters most to them, basing conversations on personal preferences and wishes. They can be supportive of individuals making their choices for their own living well, up to and including the end part of their life
To enable living well until death. Supporting everyone in our society to live as well as they can until they die, whether this is sudden or from a prolonged illness.

Putting the ‘What matters?’ charter into action

Key questions for individuals to support the gathering of key information for planning ahead: living with life limiting illness and making the most of life.

What matters most to me?
What may matter to me when I am less well or dying?
What makes me feel most at peace?
What are my networks of support and how can they be supported so that we all remain resilient and well cared for?
Care preferences
When I am less well, where do I want to be cared for and by whom?
Is there a point at which I would not want admission to a healthcare facility for further treatment which aims to preserve or extend life?
Where might I prefer to be cared for when I am dying?
Who do I want to make decisions for me if I am no longer able to make them for myself?
Do I wish to make a will?
Do I or my family have preferences for what happens after death?

Implications for health and social care providers

Part of the problem of what has been seen as healthcare ownership of Advance Care Planning has been the emphasis on avoiding unnecessary or unwanted treatments. This can make the conversation awkward, as it negatively focusses on treatments that are to be avoided rather than concentrating on what can be done to make remaining life as good as possible. Beginning the conversation through what matters most to people allows for an easier connection with discussions of acceptable levels of treatment to occur much more easily. Concentrating on what matters most opens the possibility of these discussions beginning in the community and supported by the community.

Health and social care professionals’ role includes opening up these conversations for patients when the right opportunity arises, and promoting a safe environment and space for them to be held. Care planning discussions should rarely be a single conversation. This is in part because it is an ongoing conversation not just with the person with the illness, but also with their families and those included in social networks of support. In addition, people change their mind about decisions they make depending on the circumstances in which they find themselves, so opportunities to review and refine plans are important.

Four main principles for healthcare or social care professionals’, or community supporter’s consideration with the person

Seeking to discover what matters most in life to this individual. How they see themselves, what is important to them and what makes life worth living.
Seeking to discover what are the most important social connections for this person and how such connections could help in the event of life being restricted through illness.
Seeking to discover in the event of illness, how health and social care decisions can be used to support what matters most to this person. This includes some plans about urgent treatments to be embraced or avoided. Considerations might include what they would wish not to live without and what they think would make their life intolerably difficult.
In the light of the above, and with access to clear, realistic information about likely treatment options and outcomes, to help individuals map what treatments would most likely to match their own individual needs and hopes. The process of Planning Ahead enables professionals to focus their care on what matters most to people.

Recommendations and principles of the Daffodil Standards for end of life care:

The key to developing a system for planning ahead in this way is to focus firstly on ensuring what matters most to people to be able to live well right up until the end of their life is respected, and secondly to see which treatments they would like to avoid. Discussions of what can be done for people are much easier than those which limit treatment. Shifting the focus to start with what matters most to people fits with the general principles of personalised care.

The four nations Charter suggests that future ACP conversations focus on three main areas:

What matters most to you in life when you are well?
Which of these will become priorities when you become less well?
How can you gain access to support from your social network of support at a time when you become less well so that you can ensure the priorities you describe in #2?

Advance or Future Care Planning information and templates

Here are links to useful websites which includes a template for recording your wishes in advance and explains advance care planning:

Dementia UK (Special resources for those with dementia)