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End of life issues

Accessing palliative care

When there is no cure for an illness, palliative care tries to make the end of a person’s life as comfortable as possible. This is done by attempting to relieve pain and other distressing symptoms, while providing psychological, social and spiritual support. Carers and family are also offered emotional and spiritual support – referred to as a "holistic" approach to care.

Some people with cancer, for instance, can live for many years, but they sometimes need treatments such as radiotherapy or chemotherapy, to help keep their condition under control. Palliative care can be offered following these treatments or, in the earlier stages of an illness, alongside other treatments. This can be particularly important for children and young people, who may live with a life-limiting condition for a long time.

The person you're looking after can receive palliative care:

Hospice care

Most palliative care is provided in a specialist residential unit called a hospice. Hospices are run by a team of doctors, nurses, social workers, counsellors and trained volunteers. They are smaller and quieter than hospitals and feel more like a home. Hospices can provide individual care more suited to the person, in a gentler and calmer atmosphere.

There is no charge for hospice care, but the person you're looking after must be referred to a hospice through their GP, hospital doctor or district nurse. 

At home

The person you're looking after may not need to move away from home in order to benefit from palliative care. Hospice staff are often on call 24 hours a day and can visit them at home. Your GP can arrange for community palliative care nurses, such as Macmillan nurses, to provide care at home. 

Palliative care nurses can give advice on how to manage the symptoms of the illness to help you provide better care for the patient you're looking after. They can offer practical, psychological and emotional support, and be accessed through district nurses or a person’s GP.

The social services department of your local authority may provide a range of social care services and equipment to help terminally ill people remain at home. 

Care home

Palliative care is also available in residential care homes. If someone is already in a residential home, remaining there for palliative care may be their choice, and it may make them more comfortable and less distressed than having to go into hospital. You should ask if the residential home is accredited by the end of life Gold Standards framework, which means the home has specially trained staff and good links with local GPs. 

As a day patient

The person you're looking after may prefer to remain at home but visit a hospice during the day. This means they can receive the care and support they need without moving away from home.

As a day patient, they can access more services than could be offered if they stayed at home. These include creative and complementary therapies and rehabilitation, as well as nursing and medical care. They will also meet other patients. Hospices often provide transport to and from the hospice. 

In hospital

Specialist palliative care teams are also available in hospitals. They are sometimes called the Macmillan support team or symptom control team, which can include doctors, nurses, social workers and chaplains. Alternatively, the service can be provided by a single nurse.

The service provides education, training and specialist advice on pain and symptom management to hospital staff. They advise staff on the patient’s discharge plan or transfer to a hospice, community hospital or care home. They also provide emotional support directly to patients and carers.

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The 5 comments posted are personal views. Any information they give has not been checked and may not be accurate.

colinmillysandy said on 22 July 2014

My elderly mother-in-law (92) is presently in hospital having had a major stroke. Although she is making signs of physical progress, she is now considered to be suffering from dementia. If she were well enough to be discharged from hospital on the estimated date July 29, could we think about moving her from her own home to her other son in Scotland and receive 24hr NHS care?
Thank you

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Zakichan said on 03 June 2014

This is a continuation of yesterday's post. I would just like to say we were lucky to have dad home and look after him we did everything for him up until his last breath being at home meant we could be with him all the time so he had 24 care with lots of kisses cuddles and love off his family no restricted visiting. My heart broke the day I lost my dad but I knew we all were lucky to have him at home and it was pleasure to look after a man who had cared for us all our lives. If you are able to bring your loved one home do it. It helps with the grieving knowing they were looked after the people who loved them.

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Zakichan said on 02 June 2014

My Dad was recently diagnosed with a brain tumour in February, he was first diagnosed with a mini stroke but we realised it wasn't a stroke after looking up the symptoms. A brain scan showed it was a large brain tumour. When he was admitted to hospital he had tests done and met various specialists and doctors. We informed the staff that he must not be told any bad news on his own as he wasn't fully aware of what they were on about and was unable to speak as the tumour was pressing on the part of the brain that affects the speech. As you can guess we arrived for visiting one day and he was so distressed but couldn't tell us what was wrong. The consultant had been around talking to him on his own giving him bad news. After a couple of days on steroids he started to pick up as they took the swelling down a bit we were so happy to see this as his speech and movement started to come back. Then he took himself to the toilet and fell. We weren't informed he'd banged his head only his arm and leg. Unfortunately the swelling to his brain was came back and that was the day before he was due to see a surgeon. The surgeon had no intention of operating on dad before he'd even spoken to him, his arrogance was terrible he made my dad feel worthless, and more or less said it was a waste of time and money. We decided then that if dad was going to die we would bring him home and care for him. 1dat later he was home and we had all the aids and adaptations done within 24hours which was excellent. Obviously when we realised why it was done so quick it would save the nhs money us having him at home. We had a district nurse once a week and a Macmillan the alternative week. We cared for Dad for 10 weeks at home, we refused carers as they weren't able to do this and weren't able to do that so what was the point. I here all these stories about how good the Macmillan nurses are well I can honestly say in my view they are a waste of time they did nothing for our family and didn't even turn up

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sometimesitshard2bawoman said on 10 January 2014

I had a relative in end of life care about 10 years ago and am unfortunate enough to be experiencing the same now. In those 10 years the service has not improved one iota - the word 'abysmal' doesn't come close to describing it. Information is disjointed, sevices are no-where near being "joined up" for either patient or carer. Personnel involved may aswell come out and say "well you're hardly worth the expense or effort, are you?", which is exactly how my relative (who has always staunchly supported the NHS) has been left feeling - worthless and neglected. As far as caregiving is concerned with the NHS team, Its 'over to Macmillan' who seem rather more obsessed with promoting their own image than actually giving much constructive care for the person as far as I can see. In any event, there is precious little constructuve help to give, considering the ridiculous lack of choice for end of life care offered in our area. Please consider carefully if its worth the cost of giving dying people a little more dignity than they are offered at present.

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frogg 10 said on 08 June 2012

As a carer for my mother, our GP has not talked to me about palliative care help, i care for her on my own, in our own home, the only support i was offered was "if you need anything phone the surgery!

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Page last reviewed: 09/04/2014

Next review due: 09/04/2016

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Palliative care at home

This video follows Liz Clements, a palliative community care matron, during a typical working day. Clements is part of a special end-of-life care service in Oxfordshire. The service looks after people who would like to be cared for at home rather than in a care home or hospital. It also provides support for their families. Note: Oxfordshire PCT ceased to exist in 2013. The programme is now run by the Oxfordshire Clinical Commissioning Group.

Media last reviewed: 11/04/2014

Next review due: 11/04/2016