The Leeds Teaching Hospitals NHS Trust

Patients & Visitors

Advance Care Planning

What is Advance Care Planning?

Advance Care Planning (or planning ahead) is a voluntary process of decision making between you (the patient) and the people who provide your healthcare.

Planning care ahead will allow you to feel confident that your wishes will be considered if you are ever unable to fully participate in decision making. By having good quality conversations about future treatment, you will have a greater sense of control over your ability to live and die well.

The healthcare professionals looking after you will talk to you about any specific needs and wishes and will ensure they consider those wishes in relation to the treatment they provide. They will always want to provide treatments where the benefits outweigh the risks. NHS England has provided national guidance on this topic, and an easy read booklet.

When is the right time to start Advance Care Planning?

It always seems too early, until it’s too late” – quote from the conversation project

You can start Advance Care Planning (ACP) at any time. Starting earlier is always better as it gives you more time to think through all the viable options.

Starting to think about your future wishes does not mean you are ‘giving up’ or are going to become more unwell as a result – think of it as ‘hoping for the best, planning for the worst’.

We also believe that Advance Care Planning can benefit Family and Friends. Those closest to the patient are reassured that any decisions they make are based on choices made by the person themselves – not on what we think they might have wanted.

You may want to consider a conversation with your health care professional (your consultant or GP), about Planning Ahead. If you have one or more life-limiting conditions (such as: cancer, heart disease, kidney disease, dementia, respiratory disease, liver disease and neurological disease) and one of the following indicators of poor or deteriorating health:

  • Unplanned hospital admission(s)
  • Staying in bed or chair for more than half a day.
  • Depending on others for care due to increasing physical or mental health problems.
  • Progressive weight loss; remaining underweight; losing muscle mass
  • Persistent symptoms, despite optimal treatment of your underlying condition or illnesses.
  • Choosing to reduce, stop or not have treatment; or wishing to focus on quality of life

Please know that we (healthcare professionals) will start conversations, too, if any of the above apply to you.

How do I start my Advance Care Plan?

Ask your Health Care Professional – your Consultant, GP or Community Nurse, and they will be more than happy to have this conversation with you and share further information.

Here at Leeds Teaching Hospitals, we use a tool called ReSPECT. It allows us to share the information you have discussed with your doctor or nurse between other health care professionals. This means they can be made aware of your wishes if the time comes that you are not able to tell them.

There are many booklets, templates and supporting information available on the Internet. You can find some useful links at the bottom of this page.

What goes in my Advance Care Plan?

  • An advance statement of your wishes and preferences – these are your personal choices – this might mean where you want to be cared for when you are coming to the end of life or what types of food and drink you like.
  • Lasting Power of Attorney – have you nominated someone to make decisions on your behalf? See further information here: Lasting Power of Attorney.
  • Advance Decision to Refuse Treatment (ADRT) - An ADRT is a written statement of your wishes to refuse a particular treatment in a specific situation. For example, you may decide that if your illness couldn’t be cured and you became very unwell after all possible treatment, you wouldn’t want to be kept alive by being fed or given fluids through a feeding tube or drip. Read a very useful summary here: Macmillan ADRT summary.
  • Resuscitation Decision - CPR stands for cardiopulmonary resuscitation. It is a treatment that can be given when you stop breathing (respiratory arrest) or your heart stops beating (cardiac arrest).

DNACPR stands for do not attempt cardiopulmonary resuscitation. DNACPR is sometimes called DNAR (do not attempt resuscitation) or DNR (do not resuscitate) but they all refer to the same thing.

  • DNACPR means if your heart or breathing stops your healthcare team will not try to restart it.
  • A DNACPR decision is made by you and/or your doctor or healthcare team.
  • IMPORTANT - DNACPR is about CPR only. It does not mean that you will not get care and treatment. You will continue to have all the other appropriate care, treatment and support you need.

You can read more about CPR and DNACPR on the NHS Website.

Key things to remember about Advance Care Planning

  1. Thinking about the future and planning ahead will not make you become more unwell and is not ‘giving up’.
  2. Having these conversations with your friends and family, although they can be difficult, will bring peace of mind to you and them. It reassures those closest to you that they have made decisions based on your stated wishes.
  3. Advance Care Planning is an ongoing process – you can change your mind as you go along.
  4. It always seems too soon, until it’s too late.
  5. If you have thought about your health care in the future, and written any of it down, share it with your family and your healthcare professionals.

Useful links

Find out more about Advance Care Planning on the Leeds Palliative Care Network website

Find out more about Lasting Power of Attorney on the Leeds Teaching Hospitals website

Find out more information about Advance Decisions to Refuse Treatment on the NHS website

Read more information about the ReSPECT process on the Resuscitation Council UK website

Find out more information about the ‘What if you were suddenly taken ill’ campaign on the Leeds Teaching Hospitals Website

Read the full Universal Principles for Advance Care Planning on the NHS website