Planning for the future

Looking at issues in areas of your life that are particularly significant as you reach the end of life can be referred to as end-of-life care planning. It includes legal and financial issues, planning your funeral and exploring the options about your care and where you would like to die.

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Sharing personal wishes and plans

How we wish to live the rest of our life and plan for what will happen after we die, is unique for everyone. There are both practical and emotional aspects to consider. By writing your wishes down and ensuring your loved ones know where to find all the vital documents, you will feel more in control and at peace.

It can make it easier for loved ones to cope with their grief and to feel reassured that the last thing they do for you will be just as you wished. It can be a really positive experience which is empowering for everyone involved.

To mark the 2018 Dying Matters Awareness Week, NHS Ipswich and East Suffolk and NHS West Suffolk clinical commissioning groups (CCGs) shared stories of local people with first-hand experience of death and dying to encourage others to start the conversation.

In one of the stories, Margaret Marks who lost five people close to her in less than four years, talks about how important it is for people to sit down as a family and talk about everything, from the type of funeral they’d like and whether they want be buried or cremated, to the music and photos they would like included on the day.

Margaret said:

“The last thing you will ever do for the person you love is to give them a good send-off, and you need to get it right. You can only do that if you know what they want.”

Read more of Margaret’s story on the NHS Ipswich and East Suffolk Clinical Commissioning Group website:

The charity, Independent Age shares advice on how to start the conversation on their website:


Making a will

For those left behind, the complications that arise from not having a will can be distressing and far-reaching.

The Citizens Advice website explains how important it is for you to make a will whether or not you consider you have many possessions or much money:

  • If you die without a will, there are certain rules which dictate how the money, property or possessions should be allocated. This may not be the way that you would have wished your money and possessions to be distributed.

  • Unmarried partners and partners who have not registered a civil partnership cannot inherit from each other unless there is a will, so the death of one partner may create serious financial problems for the remaining partner.
  • If you have children, you will need to make a will so that arrangements for the children can be made if either one or both parents die.
  • 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.

For more information, visit the Citizens Advice website:


Appointing an executor

You will need to name someone as an executor in your will who will be responsible for sorting out your estate when you die, including money, property and possessions.

Age UK explains what an executor is and what they do on their website:

Marie Curie provides information and a step by step guide to making a will on their website:

Further information about making a will can also be found on the following websites:


Planning your future care

A life-limiting (terminal) illness diagnosis is not always easy to live with, but understanding and choosing from the care options available at an early stage, may help you feel reassured that, when the time comes, your wishes will be respected as much as possible. There are occasions where your choice may not be possible due to the progression of your illness, but if your doctors and loved ones know what your wishes are, they can do their best to make it happen. The options include:

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 with your GP, your carer and the people you live with to see how they would feel about it.
  • By talking about death and dying in our everyday lives and making plans for the future, we can cherish every moment of the life we have and improve the experience of end of life, for both for ourselves and our loved ones.
  • Speak to your community healthcare team / integrated neighbourhood team if you live alone to see what support would be available to help you around the clock.
  • Based on the information you receive, decide (with your carer if applicable) if being cared for at home is a feasible option for you.

St. Elizabeth Hospice and the Suffolk Community Healthcare Team / Integrated Neighbourhood Team 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:

Marie Curie provides information on their website about how to get the care you need at home:

The Suffolk County Council website provides information on how to live independently at home, including equipment and adaptations, meals, personal assistants, money and debt advice, and returning home from hospital. They also have information for those with sensory and physical disabilities including mobility and accessibility, public toilets, driving and Blue Badge parking:

Care in a hospice

The inpatient unit (IPU) at St Elizabeth Hospice in Ipswich provides expert care and support to help people living with progressive and life-limiting (terminal) illnesses, and their families to live as fully as possible until the end of their life, with their care and support tailored to their needs.

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

St Elizabeth Hospice accepts patients from East Suffolk and Great Yarmouth and Waveney. You can be referred by your doctor, medical team, or you can refer yourself or a family member.

Visit the St Elizabeth Hospice website for more information or Tel: 01473 727776

Care homes

Care Homes (residential homes) provide accommodation, personal care and support for people who can no longer live in their own home. Some homes can also support people who need more specialist care such as dementia or offer short-term services such as respite care.

Care homes with nursing (nursing homes) provide nursing care in addition to accommodation, personal care and support.

If you live in a care home and are diagnosed with a life-limiting (terminal) illness, you may wish to talk to them about the care and support your doctors think you will need in the last few weeks and days of your life.

Visit the Suffolk County Council website for more information about residential care homes and care homes with nursing including a link to Suffolk InfoLink which has information about all the care homes in Suffolk:

The independent regulator of health and adult social care in England, the Care Quality Commission (CQC), inspect and rate residential care homes and nursing homes. You can find information about care homes and their quality of care on the CQC website:

The NHS website has information about care homes and other ways to get care and support:

Care in hospital

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.

Palliative care teams provide hospital staff with specialist advice on pain and symptom control. They can help staff with your discharge plan back home, or your transfer to a hospice, community hospital or an appropriate care home.

For more information visit the NHS and East Suffolk and North Essex NHS Foundation Trust (ESNEFT) websites:


Making the health and care community aware of your care wishes

‘My Care Wishes’ is the name given to a personal yellow folder that is available for everyone in east Suffolk living with a long term or life-limiting (terminal) illness. It is created by you with help and guidance from health or care professionals, family and carers. It contains details of how you would like to be cared for as your condition progresses, in an urgent situation and as you approach your final days of life. 

Once produced, it should be kept with you at all times or be easily accessible and is used to share your care wishes with all of your heath and care team to improve communication and co-ordination between services.   

Visit the NHS Ipswich and East Suffolk Clinical Commissioning Group (IESCCG) website for more information:

Further information about making the health and care community aware of your care wishes can be found on the following websites:


Organ and tissue donation

Organ donation in England has changed to an ‘opt out’ system. In all instances, it is best to have a discussion with your family or loved one to make them aware of your decision about organ and tissue donation in an End of Life situation, so that it may be explored and honoured.

Only around one in 100 people who die in the UK are usually able to be organ donors. They are typically those who have died in a hospital intensive care unit or emergency department. If the person is unable to donate organs, they may still be able to donate tissue for transplantation, even if they die outside of a hospital setting.

Visit the NHS Organ Donation website for more information:


Planning your funeral

Making decisions and setting out a detailed plan of what you would like to happen at your funeral means you can get on with living your life, safe in the knowledge that your loved ones have the information they need to celebrate your life as you would wish.

To help you do this, Dying Matters and the National Association of Funeral Directors have produced ‘My Funeral Wishes’. It’s a simple form that allows you to create a personal funeral plan that reflects you as an individual:


Financial and practical considerations

Grants

There are many grants available for people affected by terminal (life-limiting) illness. These can help with things like everyday household costs, making changes around the home, and taking a holiday.

Marie Curie provides information on their website about some of the charities and organisations that provide grants for people who have a disability or are terminally ill:

NHS continuing healthcare

Some people with long-term complex health needs qualify for free social care arranged and funded solely by the NHS. It can be provided in a variety of settings outside hospital, such as in your own home or in a care home:

Key documents

It can be helpful to keep key documents 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. Documents to include are:

  • Birth certificate
    • Passport
    • Driving licence
    • Bank account details
    • Pension plans
    • Insurance policies
    • Will

Online accounts

Most people have social media, online banking and other online accounts and services. To make things easier for your loved ones to carry out your wishes with all of these after you have died, it is advisable to take steps to leave clear instructions with your executors(s) and appropriate family and friends.  If you do not make any plans for your digital estate it is possible that items of a monitory and sentimental value may be withheld from your loved ones or claimed by the online service provider.

Marie Curie provides information on their website and in their ‘Planning ahead’ booklet on deciding what to do with your accounts and how to put your plans in place:

The Digital Legacy Association provide tutorials to help you better understand some of the most used online services and connected devices in relation to end of life planning. Their free “Social Media Will” template may be a useful tool for you to fill in and state what you would like to happen to your online accounts after your death:

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:

The 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:

Cats Protection offers a free ‘Cats Guardian’ service, through which they will look after your cat until they can find a suitable new owner:

The Royal Society for the Prevention of Cruelty to Animals (RSPCA) offers the ‘Home for Life’ scheme. If you’re no longer here to look after your pet, they will take them in and do everything we can to find them a safe and loving home. Find more details and an application form on their website:

Marie Curie offers information on rehoming your pet on their website:


Further information and resources

Suffolk County Council provides information on what choices and support are available if you are preparing for end of life or palliative care for yourself or a loved one.

The Compassionate Communities website, part of a local project to support living life fully before we die, provides advice on making informed choices and support during the Covid-19 pandemic.

Compassion in Dying is a charity that can help you prepare for the end of life including advice on how to talk about it, plan for it, and record your wishes:

Dr Libby Ferguson, Medical Director at the Marie Curie Hospice, Glasgow has published a blog post about her experience of seeing people approaching death in different ways, what she has learned about how people prepare and what can help to make it easier: