Advance care planning

Advance care planning gives you a chance to think ahead about your future care, and share your preferences with others. It involves talking your thoughts through with the people who may be involved in your care, for example your family, doctors, nurses and other healthcare professionals.

Creating an advance care plan is an entirely voluntary process and you’re under no pressure to include anything you’re uncomfortable with. You can change it at any time – it’s yours and it should reflect your wishes. It can include anything, nothing is too trivial to be discussed.

It can cover:
  • what you want to happen
  • what you don’t want to happen
  • who you would want to speak on your behalf.

You can set up a plan at any time. You may like to have some advice from a healthcare professional, and your Dorothy House Nurse Specialist or team member would be happy to discuss it with you. It doesn’t have to be in writing but you may find it easier to jot your wishes down, and this may be helpful for the healthcare professionals and members of your family. It is a good idea to give a copy to everyone who needs to know, and make sure you keep your own copy safe.

It is an entirely voluntary process and you are under no pressure to include anything that you’re are not uncomfortable with. You can change your advance care plan at any time – it’s yours and should reflect your wishes.

What can I include in my advance care plan?

You should include anything that is important to you, and is important for others to know. For example:

  • You might want any religious or spiritual beliefs you hold, to be reflected in your care.
  • The name of a person/people you may wish to act on your behalf.
  • Your preference on where you would like to be cared for, for example at home, in a hospital, nursing home or hospice.
  • Your thoughts and feelings on different treatments or types of care that you might be offered.
  • Small details, for example you may prefer a shower instead of a bath, or like to sleep with the light on.
  • Practical concerns, for example who will look after your dog should you become ill.
Refusing treatment

When you are discussing your advance care planning you may decide that there are specific treatments which you do not want to receive. This is called an ‘advance decision to refuse treatment’.

This means that you have made the decision to refuse a specific type of treatment at some point in the future. If you make this decision you will need to state which treatments you wish to refuse and in which circumstances. (You may wish to receive a treatment in a particular circumstance but not in another). For example: you may be happy to accept antibiotics to treat an infection as part of your usual care, but you may decide against them if you were expected to die within a few days.

You can also refuse treatment that could potentially keep you alive, for example, ventilation to help you breathe. This is known as ‘life sustaining treatment’.

If you wish to refuse life sustaining treatment in the future, you’ll need to make sure you do the following:
  • Put your wishes in writing.
  • Make sure it is signed by you.
  • Make sure it is signed by an independent witness.
  • You must specify which circumstances you’d like it to apply.
  • Include the statement ‘even if life is at risk as a result’.

An advanced decision will only be used if, at some time in the future, you lose the ability to make your own decisions about your treatment.

Please discuss any of these decisions with your doctor, nurse or Dorothy House healthcare professional as they will be fully aware of your medical history. They will be able to talk you through your decision, and provide useful guides that you may find helpful. You may also find the Advance Decision to Refuse Treatment website, from the NHS, useful.