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End of life care

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What is end of life care?

End of life care involves treatment, care and support for people who are thought to be in their last year of life.

This care has a strong focus on managing symptoms to keep a person comfortable, as well as offers psychological, social, spiritual support to help them to adapt to the changes in their lives, helping them to cope with the emotional impact of their illness and helping them to achieve the best quality of life available to them, their families and carers.  

A person is ‘approaching the end of their life’ when they are likely to die in the next 12 months, and includes those with:

  • advanced, progressive, incurable conditions
  • general frailty and co-existing conditions that mean they are expected to die within 12 months
  • existing conditions if they are at risk of dying from a sudden acute crisis in their condition
  • life-threatening acute conditions caused by sudden catastrophic events.

Everyone identified in their last year of life, including those with major conditions of heart failure, respiratory, cancer and dementia, is offered personalised care and support planning.

If you are approaching the end of life, or caring for someone who is, and you want to find out about the care and support available, your first step is to speak to your GP or to call the number your healthcare professionals have given you.

What is palliative care?

Palliative care in general is the care and support given to individuals with advanced, progressive, and/or incurable conditions (such as; cancer, heart disease and lung disease). Most times, palliative care is provided to people living in their own home, in the community, care homes and in hospital.

Palliative care is available when you first learn you have a life-limiting (terminal) illness. You might be able to receive palliative care while you are still receiving other therapies to treat your condition.

Palliative care can involve:

  • Managing physical symptoms such as pain to ensure the person is as comfortable as possible.
  • Emotional, spiritual and psychological support and comfort. Making sure that a person is cared for in a way that fits their beliefs.
  • Social care including help with things like washing, dressing and eating and supporting the person is connected to those that are important to them.
  • Support for family, friends, carers and those important to the patient.

Generic palliative care – palliative care delivered by generic staff involved in the day to day care of patients, but without specialist training.

Specialist palliative care is palliative care delivered by a multi-professional team who have undergone specialist training. These services are involved in the care of patients with more complex and demanding care needs.

North West London NHS have produced a Directory of services and support for anyone caring for or supporting people at last phase of life/end of life in the community (adults 18years and over).

A Universal Care Plan is created following a conversation between a healthcare professional (such as a doctor or nurse) and the person in their care. Throughout the conversation, the healthcare professional will listen, understand and make notes on:

  • What is important to the person in their day-to-day life
  • Their preferences or wishes about their care
  • What support they need and who is best placed to provide this
  • Information about others who may be involved in that person’s care, such as relatives

The care plan is then created following this conversation using the Universal Care Plan. As soon as information is saved on the plan, it is visible to all health and care services who use it. This includes the London Ambulance Service, 111 and Out of Hours GP services who may see the person in an emergency.

Having a Universal Care Plan is therefore very important as it means that all professionals involved in the person’s care are aware of the person’s specific needs and can therefore support them in the best way.

Your local GP practice team is the main point of contact for general healthcare. They're there to support you to get the right kind of care when you need it. GPs liaise with District Nurses and specialist services at the end of life and can tell you about local options if chosen to either die at home, hospice or hospital.

GPs can help with the provision of end of life medication, home visits and advanced care planning.

For medical issues, repeat prescription requests, blood tests, advance care planning etc. contact your GP practice directly or use NHS 111.

If you do not have a GP, you can Find a GP to register with.

For emergency, call 999-. For those that require British Sign Language (BSL), please click on this link.

You can contact 999 if you suspect you or the patient is experiencing;

  • Heart attack
  • Stroke
  • Sudden confusion
  • Suicide attempt
  • Severe breathing
  • Choking
  • Heavy bleeding
  • Severe injuries
  • Seizure (fit)
  • Sudden rapid swelling

NHS 111 can direct you to the best place to get help if you cannot contact your GP during the day, or when your GP is closed (out-of-hours)

NHS 111 can help if you think you need medical help right now.

You can get help from NHS 111:

Your GP and the hospital team who have been supporting you with your condition will help with planning your end of life package of care.

Hospices that provide Palliative and End of Life care in West and Central London:

Pembridge Hospice and Palliative Care

Pembridge provides holistic palliative care for people who have been diagnosed with a life-limiting illness. This means they consider the physical, emotional, social and spiritual needs of their patients and the people close to them.

Their strong multi-disciplinary team work together to coordinate care at the hospice and at home, depending on individual needs.

Pembridge Hospice and Palliative Care
St Charles Hospital
Exmoor Street
W10 6DZ
Phone: 020 8962 4406
Email: clcht.pembridgeunit@nhs.net

Royal Trinity Hospice

Royal Trinity Hospice provides skilled, compassionate care and support to people with progressive, life-limiting illnesses and those close to them across central and south west London. Trinity supports people at home and in the Clapham-based hospice through their outpatient centre and inpatient facilities. All services are provided free of charge to patients and their families. Services from Trinity are available to residents of Hammersmith and Fulham, Kensington and Chelsea and Westminster.

30 Clapham Common North Side
SW4 0RN
Phone: 020 7787 1000
Email: enquires@royaltrinityhospice.london

St John's Hospice

St John's Hospice, an independent charity located within the Hospital of St John's and St Elizabeth in St John's Wood, provides specialised palliative care to patients and their families in central and north west London. People supported include those with cancer, respiratory disease, heart failure and HIV.

60 Grove End Road
London
NW8 9NH

Phone: Mon – Sun (09:00 – 17:00) 020 3370 1010
Out of Hours: 020 7806 4040
Email: hospice.info@hje.org.uk

The information below outlines health and social care services that are accessible to patients in their last phase of life, as well as the support available for their friends, families and carers.

Harlington (HPAL) highlights the best resources relating to palliative and end of life care in an easily accessible way for clinicians and patients in North West London.
You can also receive monthly updates of all the latest articles for clinicians, patients and carers by registering your email.
Click on the link relating to your borough below

The NHS website has information for people who are approaching the end of their life and people who want to plan for their end of life care

Bereavement support

Below is just a small range of the available bereavement support.  You can find a more comprehensive range on our Bereavement page

Marie Curie bereavement support help with practical information and support on all aspects of life with terminal illness, dying and bereavement. 
Telephone:  0800 090 2309

Cruse Bereavement Care specialise in making sure that everyone grieving gets the support they need, when they need it. 
Telephone: 0808 808 1677

End of Life Doula provide non-medical support to a person, and those important to them, with a terminal diagnosis.
Telephone: 01137339100    

Hospice support: contact the hospice your loved one was registered with for bereavement support

Community and social support

Carers Network provides a tailored service for unpaid carers
Telephone number: 020 8960 3033

A Death Cafe is a group directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counselling session.

British Red Cross offers reablement service support on discharge from hospital after accident or illness.
Telephone: 07908103227 / 0203 3115429 (9:00am-5:00pm (Monday to Friday)

Advocacy support offer support to people to enable them express their wishes when decisions are being made about their care or wellbeing.
Telephone: 020 3960 7920 – choose option one

Re – Engage provides telephone befriending service for over 75’s
Telephone: 020 7240 0630 or 0800 716543

Age UK provides companionship, advice and support through a wide range of services

Mencap support for those with Learning Disabilities.
Telephone: 020 7454 0454 (9am to 5pm, Monday to Friday)

Easy ReadMarie Curie  has easy read booklets which uses simple words and pictures to help you understand the information

Religious, spiritual, emotional and cultural needs

Your loved one may wish to have their religious and spiritual needs supported by a representative of their faith. Please make this clear to those involved in the care of your loved one, and that it is recorded in their Universal Care Plan..

If your loved one is being cared for in hospital or in a hospice, there are chaplains from different religions available to support you. If you would like a member of the chaplaincy team to visit, please ask your nurse to arrange this.

In the last few days of life the NHS takes over most of the care provision meaning that but there will be no cost for this care.

However there may still be a cost for any social care services provided, unless the patient has already been receiving continuing health care.

The Dying Matters website provides advice on what to do if you are concerned about the quality of the end of life care being received by someone you know as well as wealth of information, personal stories and experiences.

The NHS website provide information on all aspects of end of life care.

Hospice UK provide information and advice for patients, carers and health and social care professionals.

Easy Read The Easy Health website has gathered together various easy-to-read leaflets which will help people with learning disabilities to understand more about palliative care and how it might affect them.

Our page on Cancer provides details of many organisations who support people with this condition and their carers.

Last updated: 09/01/2024
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