Planning care at the end of life

Advice and Information - 27 April 2020

We explain why it’s important to have a plan in place, should you or a loved one become critically ill with coronavirus.
woman walking out of door

With the current coronavirus pandemic, it’s important that you and your loved ones discuss your preferences for end of life care. This is especially important if you have been identified as high risk of severe illness if you catch COVID-19.

Whilst this can be a difficult conversation, planning can help you express your wishes, helping your family and professionals make decisions about your care if you are unable to.

The NHS should provide care in a way that achieves dignity and compassion for everyone equally. This means that every person is treated as an individual, whose needs and preferences should be considered – and an Advance Care Plan can ensure this happens.

We’ve explained what an Advance Care Plan is, how you can create one, and where to find other resources, based on guidance from the NHS, National Institute for Health and Care Excellence (NICE), as well as Marie Curie and Dying Matters.

What is an Advance Care Plan?

It is your choice whether you make an Advance Care Plan. Its main purpose is to clarify people’s wishes and preferences, so that their end of life care is delivered to meet those needs. This is important for those with the ability to make decisions now, to consider a time when they may not be able to make such decisions in future. 

Why plan ahead?

The NHS is encouraging patients, particularly those at the highest risk of COVID-19, to discuss their individual treatment preferences in case they develop the virus. An Advance Care Plan ensures that these wishes are recorded and can be acted upon if necessary. For example, this could include talking about the risks and potential benefits of attempting CPR, as well as ‘Do not attempt to resuscitate’ (DNAR) orders.

Helping your loved ones

Planning ahead can also help make things easier for loved ones too. Having an Advance Care Plan means they will be able to help doctors make difficult decisions because they already know what you would have wanted

The main questions you should think about

The Mental Capacity Act provides a number of ways for people to plan their care and support in advance.

  1. Advance statements: What you want to happen.
    These are not legally binding but should be considered carefully when future decisions are being made. They can include any information the person considers important to their health and care.
  2. Lasting power of attorney: Who will speak for you.
    This involves giving one or more people legal authority to make decisions about health and welfare, and property and finances.
  3. Advance decisions: What you don’t want to happen.
    These are for decisions to refuse specific medical treatments and are legally binding.

The following questions can help you to start to think about what is important to you

  • If your health deteriorates, where would you like to receive care?
  • Are there any spiritual or religious beliefs you would like considered?
  • Who should your doctors or nurses talk to if you become unable to make decisions?
  • How you would like practical matters dealt with, such as the care of a pet.
  • Do you have any thoughts about what you would like to happen to your body after you die?
  • Do you have any special requests, preferences, or other comments?

Your doctors or nurses can help you understand your options and what sort of care you might need. You shouldn’t feel any pressure to include anything you’re not comfortable with.

How do I make an Advance Care Plan?

You can speak to your doctor or nurse about planning ahead at any time.

It may help to read the Planning for your future care booklet produced by the National Council for Palliative Care.

Before you make your plan, think about talking your wishes through with your healthcare professional, family and friends.

Ask your healthcare professional for an Advance Care Planning form. Some NHS trusts or GP surgeries will have these available on their website. For an example of a care plan, see the Preferred Priorities for Care booklet.

Once you’ve decided what to have in your plan, give a copy of it to the people involved in your care and your family members or friends. This helps to make sure that people around you can follow your wishes.

The following questions can help you to start to think about what is important to you

  • If your health deteriorates, where would you like to receive care?
  • Are there any spiritual or religious beliefs you would like considered?
  • Who should your doctors or nurses talk to if you become unable to make decisions?
  • How you would like practical matters dealt with, such as the care of a pet.
  • Do you have any thoughts about what you would like to happen to your body after you die?
  • Do you have any special requests, preferences, or other comments?

Your doctors or nurses can help you understand your options and what sort of care you might need. You shouldn’t feel any pressure to include anything you’re not comfortable with.

How do I make an Advance Care Plan?

You can speak to your doctor or nurse about planning ahead at any time.

It may help to read the Planning for your future care booklet produced by the National Council for Palliative Care.

Before you make your plan, think about talking your wishes through with your healthcare professional, family and friends.

Ask your healthcare professional for an Advance Care Planning form. Some NHS trusts or GP surgeries will have these available on their website. For an example of a care plan, see the Preferred Priorities for Care booklet.

Once you’ve decided what to have in your plan, give a copy of it to the people involved in your care and your family members or friends. This helps to make sure that people around you can follow your wishes.

Helpful links

The information in this article has been drawn from the following guides. These sites provide further information about the planning of care at the end of life, which may be helpful when planning your Advance Care Plan:

You might also be interested in

What is SAD, and how can you manage it?

Seasonal Affective Disorder (SAD) is a type of depression triggered by seasonal changes. One in twenty people in the UK are diagnosed with the condition, with men more likely to be diagnosed with SAD than women.
Find out more