Death is inevitable and happens to us all, yet most of us choose not to have conversations about death and what it is to be dying. Knowing how you would choose to be cared for at the end of life and talking to loved ones can make a real difference not only to the person dying but to the bereavement outcomes of loved ones.
End of life carePage last updated: 25 September 2019
Click on the sections below to find out more
End of life care is support for people who are in the last months or years of their life
End of life care should help you to live as well as possible until you die and to die with dignity. The people providing your care should ask you about your wishes and preferences, and take these into account as they work with you to plan your care. They should also support your family, carers or other people who are important to you
You have the right to express your wishes about where you would like to receive care and where you want to die. You can receive end of life care at home, or in care homes, hospices or hospitals, depending on your needs and preference.
People who are approaching the end of life are entitled to high-quality care, wherever they're being cared for.
Good end of life care
Good end of life care is tailored to the person who needs it. You and the people close to you should be at the centre of decisions about your care
It helps if your wishes are written down as a personalised care plan and, if you agree, that this can be shared with the people involved in your care now and in the future. It's important your care plan is reviewed regularly so that it stays up to date as your situation and wishes change.
Important priorities for End of life care.
Experts have agreed that there are 5 important priorities for the care and support that you and your carers can expect to receive in the last few days and hours of life
- You should be seen by a doctor regularly and if they believe you will die very soon, they must explain this to you and the people close to you.
- The staff involved in your care should talk sensitively and honestly to you and the people close to you.
- You and the people close to you should be involved in decisions about how you are treated and cared for, if this is what you want.
- The needs of your family and other people close to you should be met as far as possible.
- An individual plan of care should be agreed with you and delivered with compassion.
Take a look at ‘Every moment counts’ a person centred perspective of someone approaching the end of their life: https://www.nationalvoices.org.uk/sites/default/files/public/publications/every_moment_counts.pdf
What is advance care planning
If you are approaching your end of life such as being diagnosed with a terminal illness, then you should consider recording your wishes for your care and support. This is called Advance Care planning.
There is no set way of planning ahead, but starting the conversation with your partner, family, carers and health professionals is probably the best way to start.
An advance statement can cover any aspect of your future health or social care. It is not legally binding, but people caring for you must take your advance statement into consideration when caring for you. An advance statement could include -
- how you want any religious or spiritual beliefs to be reflected in your care
- where you would like to be cared for – for example, at home or in a hospital, a nursing home, or a hospice
- how you like to do things – for example, if you prefer a shower instead of a bath, or like to sleep with the light on
- concerns about practical issues – for example, who will look after your dog if you become ill
You can make sure people know about your wishes by talking about them. By writing your advance statement down, you can help to make things clear to your family, carers and anybody involved in your care.
For more information on advance statements: https://www.nhs.uk/conditions/end-of-life-care/advance-statement/
The new ReSPECT documentation (Recommended Summary Plan for Emergency Care and Treatment) has been introduced in Hull. This document is an alternative process for discussing, making and recording recommendations about care and treatment in a future crisis, including CPR.
It also focuses on treatments that should be considered for you, as well as those that are not wanted or that would not work in your situation.
NHS Choices have also created an End of life guide for people who are approaching the end of their life and people who are caring for others who are approaching the end of their life: https://www.nhs.uk/conditions/end-of-life-care/what-it-involves-and-when-it-starts/
What is Palliative care
Palliative Care refers to the management of care when you are at the end of your life.
If you have an illness that cannot be cured, palliative care serves are there to help you be as comfortable as possible. This includes managing your pain and other symptoms, along with supporting your social and spiritual needs.
Palliative care can be conducted by either the –
- the Community Palliative Care team
- the Hospital Palliative Care team
The Community Palliative care team
The Community palliative care team are available for someone who is having palliative care and support in their own home or outside of a hospital
There are many healthcare professionals who may be involved in providing palliative care. Under the supervision of your GP, Community nurses manage the care of people in the community with advancing and progressing illness.
Whenever possible, you should consider care and support at home as being around family and familiar surroundings may help to support your emotional wellbeing.
The Hospital Palliative care team
If you are in hospital you will be referred to the Hospital Palliative Care team to help with any pain and other symptoms you may have.
Making decisions about your palliative care
You can discuss your palliative care needs with health professionals such as -
- Community Nurse
- Social Worker
These health professionals will help you to think about what you want to happen as you approach your end of life. You may also want to record your wishes to help your family and health professionals understand what you want in terms of your care and support - this is called advanced care planning.
The National Council for Palliative care(NCPC)
The National Council for Palliative Care (NCPC) is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland.
The NCPC offers advice, information and support to; professionals, patients and their carers. Their aim is to work collectively to raise the standards of palliative and end of life care.
You can contact them by telephone on: 02076 971 520 (usual network rates apply).
Financial support at end of life
If you are terminally ill and need care and support then you may be eligible to apply for –
- Personal Independence Payment (PIP), which is for people aged between 16 and 64, who have a disability or health condition, and need help with daily living or getting around - Telephone: 08009 172 222
- Attendance Allowance, which is for people aged 65 or over who need help because they have a disability - : 08007 310 122
- Employment and Support Allowance (ESA), which is for people who are ill or disabled and unable to work or need help to work - 08003 285 644
- Universal Credit, which is for people who are on low income or out of work.- 08003 285 644
If you’re living with a terminal illness, your claim for certain benefits might be fast-tracked and paid at the highest rate.
Dove house Hospice
Dove House Hospice cares for anyone who lives in Hull and the East Riding of Yorkshire area and is over the age of 18 who has a life limiting illness.
They offer support to people who require
- pain and symptom management
- care in the last days of life
- family support (social, spiritual, psychological, bereavement)
- respite care
Their services in include -
- Occupational Therapy - help the patient with difficulties that affect the ability to do everyday tasks.
- Consultant Appointments - one-to-one appointments with a leading consultant who can advise patients on specific problems relating to their illness.
- Family Support - non medical support for patients and their loved ones that run alongside life limiting illnesses.
- Complementary Therapies - creating sensations of relaxation and calm, enhanced feelings of wellbeing.
- Music Therapy - to help patients with both their symptoms and pain as well as with emotional issues.
- Outpatient Clinics - there are three clinics available offering one-to-one appointments to help with life-limiting illnesses
- Patrington Haven Holiday Park - is set in beautiful, tranquil countryside and is an ideal location
- Physiotherapy - to help patients improve their physical abilities and promote independence using a variety of different treatments
- Amy Johnson Unit - People come to the Amy Johnson Unit (AJU) specifically for the therapies and treatments
- Exercise for Wellbeing Group - an opportunity to participate in some gentle exercise to improve your wellbeing
Referrals may be made by any professional involved with the care of the patient and people can also refer themselves; supported through their GP.
Referrals can be made between 8.30am to 4.30pm Monday to Friday.
Visit the Dove House website: https://www.dovehouse.org.uk/
You can telephone the Dove House Hospice medical secretaries on 01482 785 721
Macmillan Cancer Information centre
The Macmillan Cancer Information Centre helps to guide people to the information they need including
- advice and guidance on finding the best information materials on all aspects of living with cancer
- internet access to guide people to appropriate information
- the opportunity to talk to a friendly face in a private and comfortable environment
- Information and support in determining what financial benefits are available
- support in making financial applications and help to challenge decisions
- links to the clinical and specialist nursing teams, Oncology Health Centre
- links to local and national support services and support groups in the area
For those visiting, there is no need to make an appointment feel free to drop in when you wish.
Their address is -
Macmillan Cancer Information Centre
The Queen's Centre for Oncology
Castle Hill Hospital
Visit the Macmillan website: https://www.macmillan.org.uk/in-your-area/local-dashboard/detail/Information
Alternatively you can telephone: 01482 461 154 or 08088 080 000
Marie Curie Cancer Care is a charity dedicated to the care of people with terminal illness. Marie Curie provides high quality end of life care through its Marie Curie Nursing Service and its Marie Curie Hospices.
Locally our Marie Curie nurses and healthcare assistants Marie Curie Nursing Services are available in the East Riding of Yorkshire make it possible for people to spend their last days at home, rather than in hospital.
Please note: Marie Curie Nursing Services are available in the East Riding of Yorkshire residents only
Visit the Marie Curie website here: https://www.mariecurie.org.uk/
The death of a loved one can be devastating; experts generally accept there are four stages of bereavement:
- accepting that your loss is real
- experiencing the pain of grief
- adjusting to life without the person who has died
- moving on - putting less emotional energy into grieving and putting it into something new
You may go through all these stages, but you this may not necessarily go from one to the next. Your grief might feel chaotic and may feel out of control, but these feeling will generally start to feel less intense over time
Find out more about coping with bereavement on the NHS website: https://www.nhs.uk/conditions/stress-anxiety-depression/coping-with-bereavement/
Cruse Bereavement care
The Cruse Bereavement care provides free, confidential service of bereavement support. They offer –
- face to face support
- website support
- email support
- telephone support
Their services are provided by a network of 5,000 trained volunteers and are confidential and free
Visit the Cruse Bereavement website here: https://www.cruse.org.uk/
Alternatively you can contact them via -
- email: email@example.com (Opens in a new window)
- telephone on 01482 565 565
- In Person -
Cruse Bereavement Care, Hull and District Branch
Sight Support, Beech Holme
Beverley Road, Hull
Bereavement Support payment
Bereavement Support Payment is paid to you as a one off, lump-sum payment followed by up to 18 monthly payments. You may not get the lump-sum payment and you may get fewer than 18 monthly payments depending on when you claim and when you reach State Pension age.
Who can claim?
You could get Bereavement Support Payment if at the time of death:
- you were under State Pension age
- you were married to or in a civil partnership with the person who died
- your husband, wife or civil partner paid enough National Insurance contributions
- you ordinarily lived in the UK, a country with which we have a reciprocal agreement to pay certain UK benefits, or a European Union or European Economic Area country.
Access further information on Bereavement support payments here: https://www.gov.uk/bereavement-support-payment
Alternatively you can contact Bereavement Service helpline Monday to (Friday, 8am to 6pm) via -
- telephone: 08007 310 469
- textphone: 08007 310 464
- NGT text relay (if you cannot hear or speak on the phone): 18001 then 0800 7310 469
Friends of the elderly
If you live in England or Wales, are of state retirement age and are living on a low income, get in touch as their grants could help. They currently have three types of grants available –
- -Home essentials – to cover the cost of replacing everyday items, small home repairs and mobility adaptations.
- -Digital connection – can be used towards the cost of equipment, such as tablets and smartphones, as well as -- broadband costs.
- -Financial support – to help with unexpected bills and large costs, such as utility bills, funeral costs or moving fees.
Who is eligible?
You can apply for a grant if you meet the following criteria –
- are of state retirement age.
- live in England or Wales
- are managing on a low income with savings of less than £4,000.
- are not living in a residential care home.
Applications need to be made through a referring agent. This can be someone working in local health or social care teams, the Citizens Advice, or other charities and community groups.
Alternatively you can contact them via -
- telephone: 0330 332 1110.
The Money Advice Service
- The Money advice service also has information around support to help paying for a funeral.
You can find more information here: https://www.moneyadviceservice.org.uk/en/articles/help-paying-for-a-funeral
Alternatively, you can contact them by telephone on 08001 387 777