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End of life care

What end of life care involves

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 homeshospices 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. Find out what to expect from end of life care.

Who provides end of life care?

Different health and social care professionals may be involved in your end of life care, depending on your needs. For example, hospital doctors and nurses, your GP, community nurses, hospice staff and counsellors may all be involved, as well as social care staff, chaplains (of all faiths or none), physiotherapists, occupational therapists or complementary therapists.

 

If you are being cared for at home or in a care home, your GP has overall responsibility for your care. Community nurses usually visit you at home, and family and friends may be closely involved in caring for you too. 

What is palliative care?

End of life care includes palliative care. If you have an illness that can’t be cured, palliative care makes you as comfortable as possible, by managing your pain and other distressing symptoms. It also involves psychological, social and spiritual support for you and your family or carers. This is called a holistic approach, because it deals with you as a "whole" person.

 

Palliative care isn’t just for the end of life. You may receive palliative care earlier in your illness while you are still receiving other therapies to treat your condition. 

Who provides palliative care?

Many healthcare professionals provide palliative care as part of their jobs. An example is the care you get from your GP or community nurses.

 

Some people need additional specialist palliative care. This may be provided by consultants trained in palliative medicine, specialist palliative care nurses or specialist occupational therapists or physiotherapists.

 

Palliative care teams are made up of different healthcare professionals and can co-ordinate the care of people with an incurable illness. As specialists, they also advise other professionals on palliative care.

 

Palliative care services may be provided by the NHS, your local council or a charity. 

When does end of life care begin?

End of life care should begin when you need it and may last a few days, or for months or years.

 

People in lots of different situations can benefit from end of life care. Some of them may be expected to die within the next few hours or days. Others receive end of life care over many months.

 

People are considered to be approaching the end of life when they are likely to die within the next 12 months, although this isn’t always possible to predict. This includes people whose death is imminent, as well as people who:

  • have an advanced incurable illness such as cancer, dementia or motor neurone disease
  • are generally frail and have co-existing conditions that mean they are expected to die within 12 months
  • have existing conditions if they are at risk of dying from a sudden crisis in their condition
  • have a life-threatening acute condition caused by a sudden catastrophic event, such as an accident or stroke

How do I find out about end of life care services in my area?

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.

Part of their job is to help you understand which services are available locally. You can ask about all sorts of help – for instance, there may be particular night-time services they can tell you about.

You can also use the "Services near you" search on this page.

Find Me Help has a directory of services for people in the last years of life, their families, friends and carers, based on where you live.

You can search for a wide range of practical, financial and caring services – for example, getting help around the house, taking control of your finances or speaking to a counsellor.

Carers can search for different kinds of support, including medical help, respite cover, carers’ support groups and bereavement services. 

Planning ahead

In this end of life care guide, "end of life care" also covers legal issues to help you plan ahead for your future care. These include creating a lasting power of attorney, so that the person or people of your choice can make decisions about your care if you are no longer able to do so yourself.

Page last reviewed: 09/07/2015

Next review due: 09/07/2017

Comments

The 2 comments posted are personal views. Any information they give has not been checked and may not be accurate.

Pizzleism said on 10 March 2014

@User835378: Have you considered calling the Macmillan service, or having a look at their website? Macmillan provide a fantastic comprehensive web resource which can give patients and their family information on all aspects of cancer from the type of cancer your father may have and the symptoms he may be experiencing to help with practical aspects of cancer care such as getting financial help and dealing with the psychological stress of illness and coming to terms with the diagnosis.

The advice you get here may be useful in future consultations with your GP, who should have access to the relevant specialists who can help you further. From the small insight into your situation I've got it seems to me that it's the lack of information, communication and social support that is causing you all the most hardship, so maybe if you took any questions you had to your GP this could direct the consultation and you can (hopefully) find the help and support you need.

I hope this information is helpful. Best wishes in what must be an immensely challenging time for both of you.

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User835378 said on 15 January 2014

My father was diagnosed with cancer of the gullet in october last year, shortly afterwards my mother died. He is very frail and lives alone but from that point of diagnosis he has not been seen by the consultant and had no follow up. Because of underlying conditions he cannot have any treatment and is now finding it difficult to eat partly because he cant swallow easily anymore. He appears to have no desire to eat. A care plan was in place because he had got so frail, he cant climb stairs easily, they were going to install a stairlift, it didnt happen. He had a fall and was admitted to hospital and was supposed to get a bed on the macmillan ward, that didnt happen. He is about to be discharged from hospital and his care plan will need to be agreed again because when he was admitted the care plan in place ceases and it all has to start again. My father needs palliative care, he isnt getting it, and the social worker has indicated the only option will be for him to go to a care home. He is reluctant to leave his home to go into a care home because his memories of my mother who died so suddenly after he was diagnosed are all in that house. He is in Northern Ireland and it would appear that because he is an 85 year old man with terminal cancer he doesnt matter., especially to the consultant who diagnosed him who has never spoken to him about his illness or the family for that matter. We as a family have no idea what to do we are at a loss and the minimal advice we have from the hospice nurse and the district nurse and the GP is not enough.

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Services near you

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