To Live With Dying

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.

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

• independentage.org – How to talk to family about your dying wishes

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:

• citizensadvice.org.uk – Wills

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:

• ageuk.org.uk – What is an Executor?

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

• mariecurie.org.uk – Making a Will

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

• GOV.uk – Making a will
• ageuk.org.uk – Making a will
• lawsociety.org.uk – Making a will
• moneyadviceservice.org.uk – Using a solicitor to write your will
• step.org – Society of Trust and Estate Practitioners – the international professional body for advisers who specialise in inheritance and succession planning

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:

• stelizabethhospice.org.uk – Service in your home  
• stelizabethhospice.org.uk – 24-Hour advice – OneCall Tel: 0800 567 0111
• esneft.nhs.uk – Community services in Suffolk Tel: 0300 123 2425
• St Nicholas Hospice Care 24 hour advice line Tel 01284 766133

St Helena helps patients in north east Essex to make their own choices and live with dignity by visiting and supporting them and their families at home through a range of services.

• SinglePoint – 24/7 advice, support and care coordination hub. Our SinglePoint team can make an assessment over the phone, or visit if necessary, and help people access the support they need when they need it.
• Virtual Ward provides personal care and support at home to people in the last weeks of life, helping with all hygiene needs such as washing and mouth care, as well as providing support to the family.
• Community clinical nurse specialists (CNS) or other community services can visit a patient at home to provide support when pain or symptoms are proving difficult to control or if there are complex needs.
• Counsellors, family support, physiotherapists, occupational therapists and therapy assistants can also visit to provide additional emotional, practical and spiritual advice and support to help people stay as independent as possible and to improve quality of life. This includes advice on managing getting around and day to day activities.

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

• mariecurie.org.uk – How to get nursing and personal care 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:

• suffolk.gov.uk – Help to stay at home
• suffolk.gov.uk – Staying independent with sensory and physical disabilities

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

• stelizabethhospice.org.uk – Intensive support Inpatient Unit
• stelizabethhospice.org.uk – Day Services

St Nicholas Hospice Care – Inpatient Unit

Sylvan Ward is a bedded unit that provides a peaceful environment for patients to receive personalised care.

It combines high-quality nursing and medical care with psychological and emotional support, physiotherapy and occupational therapy to provide patients with holistic care. Sylvan Ward has no set visiting times.

People come into Sylvan Ward to:

• Manage symptoms that are complex and have been difficult to control at home.
• Help people adapt to changes so that they can go back home.
• Provide care at the end of life when it is not possible to die at home.

Learn more about care on St Nic’s Sylvan Ward – Inpatient Unit

St Helena Hospice inpatient unit

St Helena provides 24 hour specialist care from an experienced team of staff and volunteers at the hospice in Colchester for local people who have complex care needs that cannot be managed at home.

Admissions to the hospice are usually for a short period of time for symptom control or to address a specific problem. Where possible and appropriate, expert end of life care is also provided for those in the last days or weeks of life.

Referrals can be made by a healthcare professional, or you can refer yourself or a family member at the website or by calling SinglePoint on 01206 890 360.

Visit the St Helena website for more information.

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 your local county council website for more information about residential care homes and care homes with nursing:

• Care homes | Essex County Council
• suffolk.gov.uk – Care homes and supported accommodation

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:

• cqc.org.uk – Find a care home

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

• NHS.uk – Care homes

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:

• NHS.uk – Being cared for in hospital
• esneft.nhs.uk – Palliative Care

The process of recording your wishes is known as advanced care planning and it has been proven that people who have advance care plans are more likely to be cared for in their preferred place of care, to receive care in line with their wishes and priorities, and their loved ones are more likely to feel they receive coordinated care in a crisis.

Watch this short video to learn more about why it’s important to share your wishes for end of life care.

Please note, this video was created for people in north east Essex and refers to ‘My Care Choices’. In Suffolk, we use ‘My Care Wishes’ instead of ‘My Care Choices. You can read more about this below.

In Suffolk you can record your wishes using ‘My Care Wishes’ and in north east Essex using the ‘My Care Choices Register’.

‘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 Suffolk and North East Essex Integrated Care Board website for more information:

• My Care Wishes (yellow folders) – NHS Suffolk and North East Essex ICB

Similar to My Care Wishes, the My Care Choices Register is for people in north east Essex. This is a secure database which health and social care professionals have access to, where you can record your priorities if you were to become more unwell in the future. You can create a record on the My Care Choices register by speaking to your GP or healthcare professional.

You will be given a My Care Choices Record to fill out and you can record where you would prefer to be cared for if possible, what your views are about the type of care you would like, or prefer not, to receive, and who you would like to be contacted.

The information can be seen by your GP, community nurse, the hospital, St Helena Hospice and the ambulance service. By having your preferences recorded on the register, these teams can easily see what is important to you in a time of crisis.

You can download a My Care Choices Record via the St Helena Hospice website.

For individuals with learning disabilities, Essex Learning Disability Partnership has created a slightly different advance care plan document to share what you want to happen at the end of life. You can download this from the North East Essex Health & Wellbeing Alliance website.

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

• NHS.uk – Advance decision (living will)
• ageuk.org.uk – Advance decisions (living wills)
• Compassionindying.org.uk – Advance Decisions (Living Wills)
• NHS.uk – Giving someone power of attorney
• ageuk.org.uk – Power of attorney
• GOV.uk – Make, register or end a lasting power of attorney
• GOV.uk – Lasting attorney of power: acting as an attorney
• Advance decision to refuse treatment
• My Care Choices Record Booklet
• My Care Choices Easy Read Booklet
• The My Care Choices Record Booklet is available in other languages at the St Helena site

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:

• organdonation.nhs.uk – What can you donate?

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:

• dyingmatters.org.uk – Celebrate your life, your way, with My Funeral Wishes

Grants and benefits

There are many grants and benefits 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.

Watch this short video to learn more about the financial support available

Please note, this video was created for people in north east Essex and refers to services available in north east Essex. For services available in your local area, please read more below.

There are ‘special rules’ for benefits to support people nearing the end of life and these have recently been improved. You can find out more about the ‘special rules’ via the Government website and ask your clinician, such as a GP, hospital consultant, hospice doctor or registered nurse, to provide medical evidence for a benefit claim under the ‘Special Rules’ process.

Find more information about grants and benefits:

• mariecurie.org.uk – Grants for people affected by terminal illness
• Get benefits if you’re nearing the end of life – GOV.UK (www.gov.uk)
• Grants and loans for people with cancer | Macmillan Cancer Support
• Coping financially – NHS (www.nhs.uk)
• NHS Continuing Healthcare (CHC) | Continuous Care Funding | Compass (continuing-healthcare.co.uk)

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:

• NHS.uk – NHS continuing healthcare

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:

• mariecurie.org.uk – Sorting out social media and online accounts
• mariecurie.org.uk – Planning ahead booklet

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:

• digitallegacyassociation.org – For the public

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:

• cinnamon.org.uk

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:

• dogstrust.org.uk- Canine Care Card

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

• cats.org.uk – Cat Guardians

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:

• rspca.org.uk – Home for life

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

• mariecurie.org.uk – Rehoming your pet