What is the end of life care pathway?

When you reach the end of life, care can help to control your pain, maintain your comfort and support you to live as well as possible, for as long as possible.

What is end of life care?

Being diagnosed with an illness for which there is no cure can be devastating. Fear of death and anxiety about coping with the pain and practicalities of reaching the end of life can seem overwhelming. End of life care, or palliative care, is the name given for support offered in the last months of life. It’s about symptom control, but it extends far beyond the physical. You and those close to you should be supported socially and psychologically so that you are able to come to terms with your diagnosis, make the most of the time you have available and reach the end in peace.

What is palliative care?

Palliative care has been defined as:

Care that is intended to alleviate a problem without addressing the underlying cause.

It is the care provided for people suffering from an incurable condition such as terminal cancer or progressive neurological conditions like motor neurone disease, multiple sclerosis or the later stages of dementia. Life-limiting illnesses can cause distressing and debilitating symptoms, including sickness, sleeplessness and pain. Palliative care should not only ease discomfort, but it should also offer holistic support to improve emotional, physical, mental and spiritual wellbeing.

End of life care pathway

The Government stopped the use of the Liverpool Care Pathway following negative feedback from patients and relatives as well extensive adverse coverage in the media. Despite aiming to provide the very best care, too often the pathway wasn’t being correctly followed, leading to unnecessary suffering.

The National Institute for Clinical Excellence has developed a better pathway for people reaching the end of their lives. They emphasise the importance of treating each person as an individual and addressing their specific needs. The cornerstones of care should be:

Improving the quality of life, making sure that patients have a positive experience with treatment and care, as well as protecting them from any avoidable harm and maintaining a safe environment.

Planning end of life care

Whether you are considering care for a loved one, or thinking about your own future, planning ahead is important for ensuring that the care you receive meets your needs. As well as dealing with practical matters like Power of Attorney, wills and funeral planning, it’s important to think about the way you would like to be supported at the end of your life.

Writing an advanced care plan can help you organise and communicate your thoughts, so that your family, healthcare team and those who care for you, fully understand your wishes. You can also edit the plan if you change your mind as your disease develops.

Questions to think about include:

• Where you would like to be cared for; in your own home or in a residential facility or hospice?
• Are there any treatments that you would refuse?
• Would you like resuscitation if your breathing stops or if you have a cardiac arrest?

The right care for you

The best end of life care should cover these five key aspects:

• Regular medical review to ensure treatment is meeting your changing needs (if your GP or specialist thinks that your death may be soon, then they should let you and your loved one know and help you all to understand what to expect).
• Sensitivity, honesty and clarity in all communications with you, and those close to you.
• Being involved in important decisions relating to your treatment and care.
• The needs of those who are important to you, like your family, partners and friends.
• A care plan designed to address your individual needs, developed and agreed with you (the plan should be delivered and executed with compassion, kindness and respect).

Who will provide end of life care?

You are not alone, there will be a team of professionals offering support. If you are at home, your GP and the local district nurse will offer help with healthcare. If you are in a home or hospice, there will be plenty of nursing staff at hand.

Specialist support is available from palliative care teams, with different health professionals working together to provide expert assistance. You can access them through a hospice, hospital, outpatient clinic and in your own home. This is known as a hospice at home service, with the specialist team working together with your GP.

End of life nursing care at home

Many people choose to spend their final days at home. The familiarity and proximity to friends and family can be comforting and reassuring. However, when you are weak and unwell, it can be difficult to manage household tasks and cope with self-care. Carers can be employed to come into your home and lend a helping hand with everything, from errands and cleaning, to support with the complex care needs that can come with a terminal illness. Whether you need continence help, assistance with tube feeding or a ventilator, carers with the right skills, experience and qualifications can be provided. Care can range from just a few hours, to full time live-in care, tailored to your individual needs. Live-in end of life care can have a number of benefits over care homes, depending on your situation. You can explore the benefits of live-in care over residential homes here.

Funding end of life care

Social services can perform a care assessment. You may be eligible for financial support to spend on care. People with health needs, which may include terminal illnesses and rapidly deteriorating health, may be entitled to NHS continuing care. This is fully-funded and can be provided in a hospital, hospice or at home.

This is a difficult time, but the right care should help ease any distress and discomfort so that you can reach the end of your life peacefully and with dignity.

Find out more:

• Macmillan: Information about living with a terminal illness and about their network of specialist nurses.
• Dying Matters: A charity working to help people plan for the end of life and talk more openly about death.