End of life issues

Planning for the end of your life is a very sensitive and personal experience. It’s important you do what feels right for you, when it feels right.

But being well informed can help you feel more in control and be confident that your wishes are known.

How do I talk to my friends and family?

It can help to talk to family and friends so that they know your wishes and preferences as you reach the end of your life.

These conversations can be hard but the following suggestions may help:

• Let your family know ahead of time what you want to discuss so the conversation doesn't take them by surprise
• Choose a time and place where you won't be disturbed or rushed
• Don't worry about trying to cover everything in one conversation
• Consider writing notes beforehand about what you want to discuss
• Don't feel embarrassed if any of you get emotional. Be honest and talk about all your feelings, not just the positive ones.

Family and friends can be reluctant to have these conversations - perhaps they don't want to think about your death, or they're worried about saying the wrong things. It might reassure family and friends to tell them that it would help you to talk.

Remember there is no right or wrong way to start these conversations. Choose the people you want to talk to, and only share as much information as you feel comfortable with. And if you don't want to talk, that's OK too.

Contact Dying Matters for leaflets on how to start conversations about dying, death and bereavement

Visit the end of life pages on the NHS Choices website

What should I speak to my doctor about?

If you have been diagnosed with a life-limiting illness, talk to your GP and medical team about any questions, worries or fears you and your family and friends might have.

Your doctor should explain your condition and treatment options in a way that you understand and answer any questions you have. You can decide how much or how little information you want - remember it's OK if you don't want all the information at once.

It might be useful to discuss the following topics:

• what to expect as your illness progresses
• the pros and cons of your treatment options
• any treatments you don't want to receive
• your life expectancy
• where you would like to die
• the different methods of pain relief available
• the practical and emotional support available
• the physical and emotional changes you could experience.

All this can be hard to take in so ask the staff to repeat any information, at any point. You may find it useful to take notes or to record the conversation if your doctor agrees. Or you could invite a close family member or friend to attend appointments with you to help you remember the information and offer emotional support.

Depending on your condition there may be a helpline staffed by specialist nurses and advisors who can offer you practical advice and emotional support. For example:

Macmillan Cancer Support has a helpline

The British Lung Foundation has a specialist helpline for people with COPD

Alzheimer's Society and Dementia UK have helplines for those affected by dementia

Terms you may hear about end of life

As you're approaching end of life, you may hear your medical team using many different expressions. These terms can be confusing but the following definitions should help.

• End of life refers to what is likely to be the last 12 months of a person's life
• End-of-life care focuses on the quality of the person's life and death, rather than the length of life. It also includes support for family and carers
• End-of-life care planning involves looking at issues across areas of your life that are particularly significant as you reach the end of life. It includes legal and financial issues, planning your funeral and exploring the options about your care where you would like to die
• Terminal refers to an illness that cannot be cured. Such illnesses may also be referred to as life-limiting

How can I plan for my future care?

Advance care planning is a specific form of end-of-life care planning. It means thinking about how you would like to be cared for in the future if you lose the ability to make decisions for yourself. Advance care planning includes:

• conversations between you, your family and medical team about your condition and how you would like to be cared for as it progresses
• making an advance statement of wishes, which tells those involved in your care how you would like to be cared for
• making an advance decision to refuse treatment in specific circumstances, which is legally binding and must be followed by all those involved in your care
• creating a Lasting Power of Attorney which give someone you trust the legal authority to make decisions on your behalf if you were no longer able or no longer wanted to make decisions yourself.

In some areas there are local registers that hold key information about the preferences of people nearing the end of life. Your GP or medical team should tell you if there is a local register in your area and ask if you want to be put on it. Authorised staff, including your GP, an out-of-hours GP, palliative care teams and paramedics, can access the register. It aims to ensure everyone involved in your care is aware of your preferences and wishes.

Where can I be looked after at the end of my life?

It can be helpful to think about where you'd like to be cared for as you become more unwell. Your choice may not be possible due to the progression of your illness, but knowing your wishes means doctors and loved ones can do their best to make it happen.

Wherever you're cared for, the most important thing is that you receive the support needed so you to spend your final days in the most peaceful and dignified way.

Care at home

You may wish to be cared for at home where you are in familiar surroundings. Some people find this helps them feel more in control and makes it easier to say goodbye.

If you would like this:

• talk it over with your GP and the people you live with to see how they would feel about it
• find out what support could be available to help you and your carers both during the day and at night
• speak to your healthcare team if you live alone to see what support would be available to help you around the clock.

Hospices and palliative care teams are often involved in supporting people who wish to remain at home through a mix of specialist services such as hands-on care, advice on controlling pain and symptoms, emergency advice lines and information. Hospices and palliative teams work closely with GPs and community nurses to co-ordinate your care.

Marie Curie's guide Being cared for at home (PDF 646 KB) has more information

Care homes

If you live in a care home you may wish to ask whether it can offer you the care and support your doctors say you will need in the last few weeks and days of your life.

• Talk to the manager about their experience of supporting residents at this time.
• Ask whether staff have had specialist training
• Ask what GP and community nursing support is available to allow you to die in familiar surroundings and avoid hospital admission
• Ask the manager whether a hospice provides support to the care home, or contact your local hospice.

Care from a hospice

Hospices specialise in supporting people with terminal illnesses and those close to them, often from the point of diagnosis. Their aim is to help you live as fully as possible until the end of your life, and their care and support is tailored to your needs. You may also hear this type of care referred to as palliative care.

Hospice services include:

• inpatient beds
• outpatient clinics
• day services
• visiting teams that will support you at home or in a care home (often called hospice at home).

They have medical, nursing and other experts who can provide:

• pain control
• rehabilitation
• emotional and bereavement support
• supportive services such as complementary therapies for you and those close to you.

You can be admitted to a hospice for different reasons. It may be for a short time while your symptoms are being controlled, for a period of respite care to give your carers a break, or you may be admitted during the final stages of your illness.

Speak to your GP and medical team to find out more about local hospice services in your area and how you can be referred for support. Hospice care is free for patients and their carers, family members and friends.

Visit Hospice UK for further information on hospices and the services they can offer

What financial and practical considerations should I take into account?

Key documents

It can be helpful to keep key documents together in a safe place and tell your carers, a family member or the executor of your will where they are. This can make things easier for them later on.

Things to gather include your:

• birth certificate
• passport
• driving licence
• bank account details
• pension plans
• insurance policies 
• will

Online accounts

If you have an online bank account, your executors can arrange for it to be closed down and claim the money on behalf of your estate. Don't leave details of your passwords or PIN numbers as someone accessing your account with these could be committing a criminal offence.

And if you use the internet to pay bills, shop or keep in touch with friends, it's sensible to think about what will happen to your digital legacy after you die. The Law Society recommends creating an up-to-date list of all your online accounts along with clear instructions about what you want to happen to each account after you die. For example, you may want some social media accounts to be deactivated, or you may want close friends or family to be able to recover sentimental items you have stored online, such as photographs.

Pets

If you have pets, you’ll want to plan what will happen when you're no longer able to care for them. You may know someone who is happy to help but may not be able to keep them permanently.

The Cinnamon Trust has volunteers who can help you keep your pets at home for as long as possible, for example by walking your dog, or fostering your pet if you have a short stay in hospital. They also have a Pet Friendly Care Home Register where you can search for care homes that are happy to accept your pet. And you can arrange for the Cinnamon Trust to take on lifetime care of your pet when you die.

Dogs Trust has a free Canine Card Scheme. If you register with this, Dogs Trust will arrange for your dog to be taken to their nearest rehoming centre where it will be looked after until they can find a suitable new owner.

And if you have cats, Cats Protection offer a free Cats Guardian service, through which they will look after your cat until they can find a suitable new owner.

Can I plan my own funeral?

A funeral allows friends and family to say goodbye and celebrate your life. Talking about what you would like and putting some plans in place can reassure your family and friends and means your funeral is more likely to reflect your wishes.

Some of the things you might like to consider and plan include:

• where you would like your funeral to take place
• whether you want a burial or cremation
• what clothes you would like to wear
• whether you want a religious service or not
• who you would like to be invited
• what songs or readings you would like
• whether you want flowers
• what you would like your guests to wear.

You might want a family-led funeral, or a woodland burial or coffin made from materials like wicker or cardboard. Find out more through the Natural Death Centre.

To find a funeral director, contact the National Association of Funeral Directors or Society of Allied and Independent Funeral Directors. They can also provide you with information about funeral pre-payment plans. Make sure you know which services are included in the price as this can vary.

Can my friends and family get support?

Once you've made all your practical plans, it's likely that you'll have many mixed emotions and your focus may shift to saying goodbye to your loved ones.

Perhaps there are things you would like to share with people before you die, or maybe you want to create something to leave behind. Some people find it helpful to write down their family history for the next generation or put together a memory box or scrapbook of their life. Macmillan Cancer Support has further information on this.

Cruse Bereavement Care can offer support and information to your loved ones after you die

Talking to children and young adults

It can be difficult to talk to children and young adults about end of life, but it can help them make sense of what's going to happen and allow you to answer their questions and address their fears and worries. Don't be afraid if you get upset. Being honest about your emotions is a good way to let them know that it's ok to show your feelings.

Dying Matters leaflet What you should tell children about death may help. You may also find it comforting to get in touch with Winston's Wish, the Childhood Bereavement Network and Marie Curie who all offer information and support for children and young adults affected by death.

The most important thing throughout this whole process is to do what feels rights for you, when it feels right.

Your loved ones may also find it useful to read our free information guides Bereavement and When someone dies.