End of life and heart failure - planning ahead

If you or a loved one is approaching the end of their life, it may be hard to think about what to do.

Although it can seem tough at first, sorting out practical matters such as your will, finances and how and where you’d like to be cared for, can be a very positive thing to do and give you peace of mind. It’s a good idea to start thinking about these plans and putting things in place as soon as you feel well enough to do so.

Taking care of yourself

Knowing you’re coming towards the end of your life can be scary, upsetting and you may even feel angry.

Visit our emotional support hub to get help for anxiety, depression and loneliness.

It can really help your mental wellbeing to keep a sense of structure in your life and practice self-care. Depending on your symptoms and how you’re feeling, you might not feel up for doing this. But if you can, try to:

bathe everyday
eat regularly
do gentle activity exercise if you can, or try to move about
do things you enjoy – hobbies/reading/watching TV
keep in contact with family and friends via telephone or social media.

Talking to loved ones

Although death is a normal part of life it’s rarely something we talk about, even with the people closest to us.

It can feel very difficult to speak about your condition or the fact that you’re approaching the end of your life. Some people find that their family members don’t want to discuss what is going to happen. Other people worry that they’ll be a burden for their family. But talking about it can help you feel closer and more able to deal with the future together.

There is no right or wrong way to start conversations, and it’s important that you do what feels right for you. You don’t have to talk about everything at once, take things at your own pace.

Get advice on starting conversations about the end of life.

Where to get support

If you’re finding it hard to speak to friends and family, you could phone your GP or nurse for help. You could also try speaking to people in a similar position to you, through online channels like Health Unlocked.

You could also visit a Death Café. This sounds scary, but they are a place for people to gather and normalise conversations about death. If you would rather get support over the phone, Soul Midwives have set up a free telephone line, available for anyone facing the end of life or caring for someone who is.

Download resources from Dying Matters on talking about the end of life.
Get support and information from Compassion in Dying.

When to begin planning

It can be hard to know when to start making plans for the end of life. The progression of a long-term condition like heart failure can be unpredictable, which makes it difficult to know when the time is right.

It’s important to discuss things with your healthcare professional as early as you can.

By discussing things as early as possible, it means you to have time to think about treatment options and preferences and where you’d want to be cared for towards the end of your life. This may help you achieve some peace of mind and a sense of control.

Thinking about what care and treatment you would like

For different heart conditions, there are different things you might need to consider when approaching the end of life:

Some people with heart failure are at risk of dying suddenly because they may develop a life-threatening heart rhythm. This can lead to a cardiac arrest. You may want to think about what you would want to happen if you had a cardiac arrest and whether you would want to have CPR or not. Without CPR, your heart rhythm would not be restored, and you would die.
If you have an ICD (implantable cardioverter defibrillator) fitted, you might want to discuss whether to deactivate it (turn it off). This would mean that if you were to have a cardiac arrest, your ICD wouldn’t be there to restore your heart rhythm which would help to minimise any discomfort or distress. Read our ICD deactivation FAQs for more information.
Antibiotics are given to help your body fight infection. You may decide to refuse antibiotics.

It’s good idea to involve loved ones in these kinds of decisions so they’re aware of your wishes. You might also want to discuss matters like organ donation and how you intend for your wishes to be recorded.

Organ donation

The law on organ donation in England has changed. Since 20th May 2020, organ donation has moved to an “opt-out” system, meaning all adults are now considered organ donors when they die, unless they’ve opted out or are in an excluded group.

You can register your preference on the NHS Organ Donor Register.

In Wales, there is already an “opt-out” system in place. In Scotland the “opt-out” system is coming into law in March 2021. In Northern Ireland, there are no immediate plans to change to an “opt-out” system.

Find out more about organ donation in England, Scotland, Wales and Northern Ireland.

Advance statement

An advance statement sets out your wishes in case there comes a time where you’re unable to express them yourself. It allows you to write down anything that’s important to you. This can be about any aspect of your life, health or care.

Read more about advance statements.

Advance decision (Living Will)

An advance decision or a Living Will is a decision you can make to refuse any type of specific treatment at some point in the future. In Scotland it’s known as an advance directive. It would only be used if you are too ill to speak for yourself and it means that your family or friends do not have to make difficult decisions on your behalf.

The difference between an advance decision and an advance statement is that an advance decision is legally binding so a healthcare professional must follow it by law.

Find out more about advance decisions.

Lasting power of attorney

A lasting power of attorney is a legal document where you appoint one or more people to help you make decisions or to make decisions on your behalf.

This gives you more control over what happens to you if you are unwell and unable to make your own decisions.

Find out more about making a lasting power of attorney.

Where you’d like to be cared for

An important choice to make is where you’d like to be cared for. Everyone is different and will have different priorities for their care. This is something to chat to family and friends about as they might have opinions too.

You can express your wishes about where you’d liked to be cared for in an advance statement or advance decision.

Bear in mind that you might need to be flexible about your wishes, as hard as this may be. Talk to your GP or nurse if you have any queries about how your care might be affected.

At home

Many people prefer to be cared for at home, with surroundings and people that they know well.

If you wish to be cared for at home when you are nearing the end of your life, the preparations will need to be done as early as possible to receive assistance.

If you decide that you wish to be cared for at home, you will need to talk to your doctor or contact your local social care services department. They will be able to advise on a range of services available in your area.

Hospice

Hospices aim to feel more like a home than hospitals do and tend to have a gentler and calmer atmosphere. They provide care for people with an incurable illness and place a high value on dignity, respect and the wishes of the person who is ill.

Hospice care can be provided in a care home, as an in-patient at the hospice itself, or as a day patient visiting the hospice. The healthcare team include doctors, nurses, social workers, therapists, counsellors and trained volunteers.

Visit Hospice UK’s website to find out more about hospice care.

Care home

In a care home, trained staff are available to look after you day and night. They can provide care such as help with washing, dressing and providing meals.

When considering a care home, you may want to ask about the experience and support they have in providing end of life care.

Find care homes in your local area by using the Care Quality Commission’s care home directory.

Hospital

It’s not uncommon for people with a long-term condition like heart failure to be in and out of hospital. This often happens because your condition gets worse and you need treatment and more support from healthcare professionals.

In hospital, you will be cared for by the doctors, nurses and other healthcare professionals who work on the ward where you are staying. Many hospitals have specialist palliative care teams, who work alongside and help hospital staff to care for people nearing the end of their life.

Making a will

Making a will can help bring you peace of mind and is very easy to do. It makes sure that your money and belongings will go to who you want them to go to. Without one, the law will decide who gets your assets.

It’s still possible to write a will at this time as solicitors working to execute wills are considered key workers by the Ministry of Justice. They may be able to take instruction over the phone or arrange a video consultation.

You need to get your will formally witnessed and signed to make it legally valid. Your solicitor will be able to advise on how to get your will witnessed while adhering to social distancing rules.

Read GOV.UK’s advice on making a will.

Arranging your finances

Arranging your finances is an important part of planning before the end of life. By sorting out as much as you can ahead of time, it will take the stress and worry away from your loved ones.

Money Saving Expert has a helpful guide on minimising financial issues after death.
Read the Money Advice Service’s guide on getting your affairs in order.
Find out more about managing your pension.
Speak to your bank if you have concerns about what will happen to your bank account.

What to leave behind

When you start to plan ahead for the end of your life it can be quite normal to start thinking about the life that you’ve lived and the experiences that you’ve had and shared with others. You may also think about unresolved issues or try to make amends.

Some people want to leave things behind to their family or friends as a way of expressing their feelings. You could:

Create a memory box or a photo album that brings back good memories. You can do this on your own or with your partner, family, friends, children or grandchildren.
Write letters.
Record voice messages on your phone or computer.
Make a video on your phone or computer.

Planning a funeral

You might find it useful to talk about and plan your funeral. Talking to family and friends about this can make sure your funeral reflects your wishes, your life and can make a difficult time easier for your loved ones as it takes away some stress and worry they may have.

A funeral director will be able to help with making arrangements.

Caring for someone at the end of their life

When someone you love is facing the end of life, it’s an extremely worrying and upsetting time.

If you're caring for someone who's approaching their end of life you can find support on our caring for a heart patient page.

More help and information

Call our Heart Helpline.
Visit our online community, HealthUnlocked, to chat with others who might be approaching the end of life.
Visit Cruse Bereavement Care for helpful advice on dealing with grief while being isolated.
Dying Matters has information and support about making plans for end of life and speaking about death.
Compassion in Dying can support you with preparing for the end of life.
Marie Curie provides information and support about terminal illness and palliative care.
Visit Mind if you are struggling with anxiety, depression or any other mental health conditions.

Planning ahead – heart failure and the end of life

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