End of life care
End of life care helps you or your loved ones to live as well as possible until you die and die with dignity.
End of life care
Understanding what the end of life care journey may look like and what support is available can help you and your loved ones to plan ahead.
Palliative care
Palliative care discussions about your end of life care are likely to begin when you are diagnosed with a life limiting (terminal) illness. The focus of palliative care is to manage your pain and other symptoms to make you as comfortable as possible.
As part of palliative care, an end of life care plan is likely to be agreed with you when medical professionals believe you have less than 12 months to live. The NHS have five priorities for this care:
- 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.
Where possible end of life care should be provided in a place of your choice. You can typically receive this care:
- At home
- In hospital
- In a hospice
- In a care home
Further information on end of life care can be found on the NHS website.
Care funding and benefits
NHS Continuing Healthcare is fully funded care provided by your local Integrated Care Board (ICB), also known as your NHS trust. If you are receiving end of life care and have:
- A rapidly deteriorating condition, and
- May be entering a terminal phase
Then you may be fast tracked for NHS Continuing Healthcare, with no need to complete the usual detailed assessment process. If staff caring for you believe that you might be eligible, they should request an ‘appropriate clinician’ complete the fast track tool. An appropriate clinician may be a doctor, nurse or specialist in end of life care.
There are certain state benefits that your application can be fast tracked for if you have a terminal diagnosis of 12 months or less. Note in Scotland there is no time limit other than being diagnosed with a disease that will get worse over time and will cause your death. These special rules can mean that you have to fill out fewer forms, don’t need to complete certain assessments or receive your first payment sooner. Benefits covered include:
- Attendance Allowance
- Personal Independence Payment (England, Wales, NI)
- Adult Disability Payment (Scotland)
- Employment and Support Allowance
- Universal Credit
If you are applying under these special fast track rules, you will need a medical report form from your healthcare professional.
You can read more about State Benefit eligibility on our benefits page.
When someone dies
After the death of a loved one you may feel, understandably, overwhelmed by the emotion of the situation and the uncertainty of what comes next. This section aims to guide you through the practical steps that need to be taken:
- Reporting a death
If you discover someone has passed away, you should contact their GP if their death was expected and 999 if it was unexpected. If the person died in hospital, then the hospital will inform the appropriate people. Following this a medical certificate will be provided. If the person had a funeral plan, then you may wish to contact the funeral directors to notify them of the death.
Finally, the death can be registered at any register office. The registrar will provide the death certificate, a certificate for burial or cremation and a code for the Government’s ‘Tell us Once’ service.
- Informing organisations
The ‘Tell Us Once’ service allows you to update many Government departments at once about a person’s death. This includes: Electoral and Council Tax, HM Passport Office, HMRC, Blue Badge Scheme, DWP and DVLA.Alongside this there are likely to be other organisations to inform. Such as: banks/building societies, insurance providers, utility companies, GP, Dentist, Social Services.
- Arranging a funeral
If the person who died had made provision through a funeral plan, you may wish to contact the company to explore the support they can now provide.Where a person does not have a funeral plan, you can contact funeral directors or arrange a funeral without the help of such a service.
- Bereavement support
The loss of a loved one is a very personal experience. Everybody will work through bereavement in the way that is right for them. If you would find it useful to speak to someone or seek support, the following organisations may help:
- AtaLoss (bereavement directory)
- Cruse Bereavement
- The Compassionate Friends (if you have lost a child or grandchild)
- National Bereavement Service
- Samaritans