ARRANGING ADULT CARE

End of life care

"I need help with my end of life care."

End of life planning

Nobody wants to think about when they will die, but death is something we all face at some point in our lives.

Preparing a plan for the care and support you will need within the last months or years of your life will:

  • make sure your family and friends know and understand your feelings and wishes
  • help you to understand the choices available
  • inform healthcare professionals on how you wish to be treated
  • make sure you get the care and support you need so you can live as well as possible until you die
  • allow you to die with dignity, and communicate your funeral and burial plans.

There's no set way of making an end of life care plan, but here’s some advice you may find useful.

Talk to family and friends

Telling someone about your terminal diagnosis, and talking to them about the end of your life, can be very emotional but doing so will make it easier for others to support you when the time comes.

By opening up to your family and and friends about how you feel, you can make sure they have a clear understanding of your wishes. It can also help you to feel in control.

You family members may also feel better knowing they won’t get anything wrong.

Here are some websites that can help:

Have you said everything you want to?

As well as planning for your end of life, you may also want to think about any other conversations you have planned to have with friends or family members and you haven't yet. If talking to people is difficult, you could think about writing letters. If there is someone you haven't seen in while - you may wish to arrange this.

Health and care

It can be difficult to think about how your life will change as your illness progresses. However, it is very important to do this now as it’ll help both your loved ones and the medical professionals who treat you to understand your wishes - particularly if you can not communicate them further down the line.

Here are some topics you may wish to consider:

Everyday life

Think about the everyday things you do and how you like to do them, for example:

  • Where do you drink your morning coffee?
  • Do you prefer a bath or a shower?
  • What time do you usually go to bed?
  • Do you sleep with the light on?
  • Are there any foods you dislike, and what are your favourites?

It may seem odd to document your routine, but by writing it down, the people around you can help you to continue living your life as normal as possible.

Choosing your place of care

You may want to consider where you want to live at the end of your life.

Like most people, you may want to spend the end of your life at home, however as you are nearing death and very unwell, this may not always be possible. At this time, you may prefer to receive support in one of the following places:

  • a hospice
  • a hospital
  • a residential or nursing care home
  • the home of a family member.

You can find out more about where you can be cared for on the NHS website.

Healthcare, medical treatments and interventions

Thinking about what would happen if you became ill is difficult, but it is important to recognise that there might come a time when you are unable to express your thoughts and wishes. For example, if you had a stroke.

Some people make an advanced decision, also known as a living will. This allows you to write down any treatments that you don't want to have in the future. It can clarify your wishes for family members, carers and health professionals. For example, if you want to refuse treatment in some situations and not others.

Make sure you talk to your GP or local healthcare team about your plans. They will be able to provide, or guide you to, detailed information to help you make informed choices.

To find out more about advanced decisions visit the NHS website.

You can also find out more and download an advanced decision form on the Compassion in Dying website.

Organ donation

It is now automatically considered that you have no objections to being an organ donor when you die.

You still have a choice though. You can register to your wish not to be an organ donor on the NHS website.

When the time comes your family will always be asked, so it is important to let them know what you have decided.

Practical considerations

Practical issues may be the last thing you want to think about towards the end of your life. But you may find it helpful to put some arrangements in place now so that you are confident about what will happen at the end of your life and after your death.

Power of attorney

Power of attorney (LPA) is a legal document that allows you to appoint one or more people to make decisions for you, or act on your behalf.

You might need someone to make decisions for you, or act on your behalf, on:

  • a temporary basis - for example, if you're in hospital and need help with everyday tasks, such as paying bills
  • longer-term - if you no longer want to make your own decisions, or you have been diagnosed with an illness that means you could lose the mental capacity to make your own decisions in the future.

You can learn about the types of power of attorney and how to set one up on the Age UK website.

You can also make, register or end a lasting power of attorney on the GOV.UK website.

Your will

Making a will is important for many reasons:

  • it is the only way to make sure your money, property, possessions and investments, known as your estate, go to the people and causes you care about. If you do not have a will, the law will decide and this may not be the same as what you would have chosen
  • if you have a partner but you are not married, or you have not registered a civil partnership, they will not be able to inherit from you unless you have a will. This can create serious financial problems for them
  • if you have children, you may want to consider appointing a guardian for them in your will. This will make sure they are cared for if both of their parents have died
  • it may be possible to reduce the amount of tax payable on the inheritance if advice is taken in advance and a will is made.

There are several ways to make a will. You can:

  • write it yourself – you can buy templates in stationery shops or online
  • use a will writing service
  • hire a solicitor.

You can find guidance on how to write a will on the Age UK website.

There’s information on hiring a solicitor to write your will on the Citizen’s Advice website.

Pet care

If you have 1 or more pets, it is important to put steps in place to safeguard their wellbeing when you are no longer here to care for them. Here are some options to consider.

Talk to family or friends

Before you do anything else, we recommend that you talk to family and friends to see if any of them would be willing to take on your pet(s). Be honest with them. Make sure they understand what is required so they can make an informed decision. Tell them the following things about your pet(s):

  • their daily routine
  • their likes and dislikes
  • what it takes to care for them properly
  • any medical needs
  • their average lifespan.

They should also be aware of the costs involved, such as with:

  • food
  • any medication
  • potential visits to the vets
  • yearly pet insurance.

Your pet(s) may be easy to care for now, but make sure you check that any potential caregivers can still cope:

  • if a pet becomes unwell and needs to be taken to the vets
  • when a pet gets older and needs extra care and support, for example, it may need extra medication or to be carried outside to the toilet.

When you choose a caregiver, it is worth naming a back up too and putting them in touch with each other. Simply because people’s circumstances can change over time.

Register your pet with a charity

Several charities provide a service to care for bereaved pets for the rest of their lives. These services are usually free but you can leave money to the charity in your will as a thank you.

To help you decide, you could arrange visits to each charity. This would allow you to see what life would be like in the care centre if the charity were unable to rehome your pet. You may also be able to meet with people who have rehomed a bereaved pet.

Funerals and memorial services

Usually family members, or the executors to your will, organise what happens after you die.

However you may wish to make some funeral plans of your own to:

  • consider funeral costs when you write or revise your will
  • take out a pre-paid funeral plan
  • ease the future burden on your family
  • help the people who are close to you to celebrate your life in a meaningful way
  • guide those who will make the arrangements - particularly if you have no close relatives.

Your funeral or memorial service

Here's are some things for you to consider when planning your funeral or memorial service:

  • Where would you like your funeral, memorial service and/or wake to be held?
  • What type of service do you want? Would you want a religious ceremony?
  • Are there any songs, hymns or readings you would like at the service?
  • Would you like flowers, or donations to your chosen charity?

You can read more about planning your own funeral on the Marie Curie website.

Your final resting place

You may also wish to think about your final resting place:

  • Would you like to be buried or cremated?
  • Is it important to you where you are buried? For example, near to relatives or at a family church?
  • Is there somewhere special that you would like your ashes to be scattered?

Find out about local burials and cremations on the East Riding of Yorkshire Council website.