Advance care planning is the process of making decisions about your priorities and preferences for your future care.
The process will most likely involve a number of conversations over time, with your family or loved ones, and your palliative care team. Some of the outcomes of these conversations may include:
- An advance statement – of wishes, preferences and priorities, and may include nomination of a named spokesperson
- An Advance Decision to Refuse Treatment (ADRT)
- Nomination of a Lasting Power of Attorney (LPA) for health and welfare who is legally empowered to make decisions up to, or including, life-sustaining treatment on behalf of the person if they do not have mental capacity at the time, depending on the level of authority granted by the person.
- Context-specific treatment recommendations such as emergency care and treatment plans, treatment escalation plans, cardiopulmonary resuscitation decisions, etc
- Identifying your Preferred Place of Care (PPC) – whether you would like to be cared for in a hospital, home or hospice.
On this page, we talk about why advance care planning is important, how to go about making one, and what you can include.
Why is advance care planning important?
Living with sarcoma can be unpredictable, and it can be difficult to know what the future holds.
Having an advance care plan can help reduce stress and uncertainty for you and your loved ones. Knowing that you have a plan in place can provide a sense of relief and help you focus on the present.
It can also increase your sense of control. By making decisions about your care and treatment preferences, you can have a greater sense of control over your life, even in the face of a serious illness.
It can also help to improve communication with your palliative care team and loved ones. Having an advance care plan in place can help ensure that everyone is on the same page about your care and treatment preferences, avoiding any potential misunderstandings.
And lastly, having an advance care plan will help to ensure that your wishes are respected, even if you are no longer able to communicate them yourself.
Making an advance care plan
You can start making an advance care plan at any point – you do not need to wait until your health has declined.
Your GP or a member of your palliative care team may suggest a meeting to start discussing options for your future care. You can bring a family member or friend, or carer with you if you wish.
You can also ask your healthcare professional for an advance care planning form. Some NHS Trusts or GP surgeries will have these available on their websites. Marie Curie has some useful links on their website.
What to include
Your advance care plan should be a reflection of your wishes and preferences for your care and treatment. This might consist of:
- the details of the person you have chosen to make decisions on your behalf if you’re no longer able to make them (your Lasting Power of Attorney or LPA)
- how you would like certain symptoms to be managed
- where and how you would like to be cared for
- any spiritual or religious beliefs you would like to be taken into account
- decisions about CPR and/or a DNACPR statement
You may change your mind about any decisions you’ve made during advance care planning. You can review and revise your advance care plan at any time.
Sarcoma UK have partnered with 1st Step Wills & Trusts, which means you can have a will written or amended for free. Read more.
Published: May 2023 Next review due: May 2026
