Advance care planning

What is advance care planning?

Advance care planning (ACP) is the process of thinking, and having conversations, about the care you would like in the future if your health were to change.

The International Consensus Definition of Advanced Care Planning is:

Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness.

In some places advance care planning is known by another name, for example in Scotland it's known as anticipatory care planning, but the process is the same.

Why might I want to think about advance care planning?

You might currently be living well with your MS but if it were to worsen, or if you became unwell for another reason, do you know what your treatment options might be? Or who you'd want to make decisions about your care if you weren't able to decide for yourself?

Talking through what might happen and what treatment options are possible, can increase your understanding of your condition. It can also allow you to prioritise what's important to you and help you make choices and maintain control over your life.

Sharing your thoughts with your loved ones and anyone who's closely involved with your care, means you can feel more prepared should a particular situation arise. It's especially helpful if you've had these discussions before a crisis occurs. Whilst it can be an emotional process, it can be very reassuring to have these plans in place and know that everyone is aware of your wishes. It's also a way to get your voice heard if you feel very strongly about something, especially if it's a treatment you don't want to have.

Having an advance care plan in place means it's more likely that you'll receive the care you want in the place that you choose.

When should I think about advance care planning?

There's no right or wrong time to think about it. You can raise the topic of advance care planning at any time. It may be that health professionals involved in your care suggest thinking about it if there are changes in your health. Or you might want to bring it up with them. 

You might want to start putting plans in place as soon as you're diagnosed. Sometimes an event in your life, seeing the experience of a friend or family member, or a news article may be the trigger that starts you thinking about what you might want to happen in a similar situation. You might find that you never feel ready.

Some things may be easier to discuss than others or have more relevance at different stages of your life. Some of the times that you might find yourself thinking about the future and wanting to make plans are:

  • at diagnosis
  • if there are significant changes in your MS
  • receiving another diagnosis alongside your MS
  • at retirement or if you need to stop working
  • the death of someone close to you.

What does advance care planning involve?

ACP is an umbrella term which can include many different things, such as:

  • conversations about your wishes and priorities for the future
  • writing down your wishes
  • sharing your thoughts with health professionals and family and friends
  • appointing someone to act on your behalf if you were unable to make decisions, eg a lasting power of attorney (LPA)
  • refusing specific treatments in advance
  • decisions about blood transfusions, organ donation and resuscitation
  • making a will and sharing any preferences you have for your funeral.

Advance care plans can include absolutely anything that's important to you. It can be helpful to think about what you'd want the people looking after you to know if you weren't able to tell them yourself.

You might want to include:

  • any important cultural, religious or spiritual observances you'd like to be followed
  • any dietary requirements
  • who you'd want to be consulted about your care and to be there to support you
  • where you'd prefer to be cared for, eg hospital, home or a hospice, and where you'd like to die – this might be the same or different places
  • practical matters, such as who would look after children if you were unable to.

Advance care planning is not just one conversation. Your thoughts and wishes may change over time, and you can change your plan at any time to reflect this. Your plan can be as detailed or as basic as you'd like.

Advance care planning is about helping you to live as well as possible right to the end of your life.

Find out more

Rietjens JAC, et al.
Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care.
The Lancet Oncology 2017;18(9):e543-e551.
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