End of life and palliative care – an...

Last Updated: May 7, 2025

In this blog, Claire Henry MBE, and Gina King, explain End of life care – what it means, what services are available, and the importance of planning for the future, as well as the practical aspects to take into consideration.

We would like to begin our blog with the powerful words from the founder of the Hospice movement Dame Cicely Saunders

“You matter because you are you, and you matter to the end of your life.”

Because everyone is individual.

End of life, palliative care and hospice care

When we talk about palliative and end of life care, what does it mean? In short, it is about providing care and support to people who have been diagnosed with a life limiting condition, or who have had something suddenly happen to them which will shorten their lives. Palliative care and support is also provided to those important to the person during their illness; whether that be family, friends, neighbours, religious leaders, or even pets. This can also take place over the course of hours, days, months or years, as well as into bereavement.

What is end of life care

End of life care is a form of palliative care you receive when you’re close to the end of life. The NHS explains that end of life care is for people who are approaching the end of their life regardless of their condition, who want to plan ahead to focus on their quality of life, so they have more choice and control.

Some people may be at the end of their lives for many years because of life-limiting conditions but it also includes people whose death is imminent (expected within a few hours or days). Further understanding can be found via End of life care – NHS (www.nhs.uk).

What is palliative care?

Palliative care is an important component because it improves the quality of life in the last year, months, weeks, hours and minutes of the person’s life. The World Health Organisation defines palliative care as follows:

“Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”

When should someone be offered palliative care?

Palliative care is available when you learn you have a life-limiting (terminal) illness. You might be able to receive palliative care while you are still receiving other therapies to treat your condition.

Where does it take place?

If you are approaching the end of life, you may be offered care in a variety of settings. A palliative care team should try to organise for you to be cared for according to your wishes, whenever possible.

You can receive end of life care:

At home.
In a care home.
A hospital.
In a hospice.

What is a hospice?

Hospices provide care for people from the point at which their illness is diagnosed as life limiting (terminal) to the end of their life, and into bereavement.

When is a hospice appropriate?

People tend to think of hospice care as being something you have when you are dying, but this is not the case. Similarly, they are often linked with cancer care – but they can in fact benefit people with many other illnesses by providing palliative and end of life care. Respite services are also available. To find out what your local hospice offers, and where it is, visit Hospice UK.

How to access palliative care and end of life care services

Everyone has different needs when it comes to palliative and end of life care. What we want you to think about is what you would like; and about what those important to you may need.

Knowing where to start can be a daunting prospect. We suggest that you begin by contacting your GP and/or community nurse. They will be able to help you to find out what is available locally. Some areas may have information available in one place on a website. This could be via your local authority, or a locally developed website, for example, Dying Matters in Leicestershire and Rutland.

National organisations can also help – examples include: Age UK, Marie Curie or a charity named after the person’s condition e.g. Stroke Association, British Lung Foundation, Alzheimer’s Society, Macmillan Cancer Support, and other cancer charities.

What to think about when planning ahead

We all know when we plan ahead for an event or situation, the chances are there will be a better outcome and less worry along the way. This is especially significant when you or someone important to you, is nearing the end of their life. To start, think about:

What matters to you?
Where would you like to be living when we become unable to care for ourselves?
How would you want your symptoms to be managed?
Who would you want to be with you?
If you lost capacity, who will advocate for you?
If you are unable to manage your finances, who could you ask?

Thinking about these questions in advance is vital. Make sure you share your answers with the heath and social care professionals who are managing your care. And remember, you can always change your mind at any time about a decision or choice you have made.

What do all the different terms associated with end of life care mean? Where can I find more information?

There is a lot of useful information available to help with planning. Please note, some aspects have legal standing and must follow a clearly laid out process. Below, we go over some of the key terms you are likely to hear, as well as where to find more information about them.

Advance Care Planning

ACP is discussion between an individual and their care providers about what they want their future care to look like, while they have mental capacity to do so. ACP is a voluntary process and is not legally binding but it is useful to inform decision making in the future if the person subsequently loses their capacity to make decisions about their care.

Universal Principles for Advance Care Planning (ACP) Is a guide for everyone involved. As well as detailing what ACP is, it explains the benefits for all parties – the person, their families, carers and others important to them, as well as the health and care workers supporting them. It is a good resource for what questions you need to ask the professionals who are managing your care.

Advance statement about your care wishes

This is a written statement about your preferences on what your care involves. It can help ensure what you would/would not like to happen in the future if you become unable to speak for yourself. It is not legally binding, but anyone who’s making decisions about your care must take it into account. Find out more here.

Advance decision (living will)

An advance decision tells medical staff how you wish to be treated when you’re no longer able to communicate your wishes to your medical team. This allows you to legitimately write down that you do not want specific life sustaining treatment relating to your condition. It is a legal document care teams must follow but needs to be witnessed signed and dated. Find out more here.

Giving someone power of attorney

If you’re 18+ and have the mental capacity to make financial, property and medical decisions for yourself, you can set up a ‘lasting power of attorney‘. This gives someone else the ability to make these decisions for you in the future.

There are three types of legal documents called lasting power of attorneys that give authority to manage your finances and/or your health and welfare needs when you are unable to in the future.

The ReSPECT process

This creates personalised recommendations for your clinical care and treatment in a future emergency when you are unable to make or express choices.

It can be for anyone but is especially relevant for people with complex health needs, people who are nearing the end of their lives, and people who are at risk of sudden deterioration or cardiac arrest. More about the ReSPECT process for patients and carers can be found here.

Some are other useful websites that you may want to explore to help you or those important to you gain the right information in the right format (language, content) include:

What else may be helpful to consider

Start writing down what you want or don’t want to help those providing your care now and, in the future.
If you feel comfortable, talk to those important to you about how you would like to live in the last years/months/weeks/days.
Be informed as much as you want to be.
Know you have choice and control and ask questions of the professionals involved in your care.
Let the GP Practice know of your concerns, they can listen and document what you have noticed. This helps their visit and assessment of the situation.

Questions to ask health and care professionals

Knowledge is power and it can help to be prepared with questions for your care team. Below are some things you may want to ask the professionals involved in your care.

Who will be my main point of contact?
What telephone numbers will be useful in an emergency day or night?
When will I know if my condition worsens?
Where can I get local information?
How can I share my information to those who are caring for me?
Why isn’t there one number to call?

What could friends and neighbours do to help?

Support doesn’t just come from your care team. Help often comes from those close to you. Often, friends, family, and neighbours may want to help but just do not know who, or how to ask. You could offer them small jobs you are unable to undertake, e.g. collecting a prescription. You will likely find that the more you ask or they offer, the easier it becomes to accept help. In time, with your permission, others (neighbours/friends circle) can share out tasks (and create a rota).

What to do when a loved one dies

Obviously this is a very challenging time. There are things that need to be done, all while you are dealing with your own grief. From a practical stand point, you will need to do the following when someone dies:

Register the death.
Tell the government.
Arrange the funeral.
Check benefits, pensions and taxes.
Deal with the estate.

There is an excellent guide on the .gov.uk website, which walks you through each of these steps in detail. Tell Us Once is a useful service that lets you report a death to most government organisations in one go.

There may be offers of local support, both practical and emotional e.g. bereavement help points and local hospices. Your GP, community nurse, and other specialists involved in your loved ones care will also be able to sign post you further. National organisations like Good Grief Trust, Child Bereavement UK and Cruse also have a wealth of information and support.

Dying with dignity

Everyone should have the chance to die with dignity. We get one chance to get this right so we all must take control, think, discuss and write down what is important to us. We need to open the conversation around dying and make sure we share what matters to us with both those we care about, and those involved in our care.

“I can make the last stage of my life as good as possible because everyone works together confidently, honestly and consistently to help me and the people who are important to me, including my carer(s).”

This powerful statement from “every moment counts” is at the heart of the national framework “Ambitions for palliative and end of life care”.

You may also find this article useful -which details the 5 stages of palliative care.