What's in the 'End of life care' section?
- End of life care for pancreatic cancer
- Coping with the news that you’re dying
- Talking about dying
- Care towards end of life
- Where to receive care
- Symptoms towards end of life
- Information for families at the end of life
- Signs that the end of life may be near
- When someone with pancreatic cancer dies
- Coping with loss
- Further information and support
Choosing where you would like to be cared for, and where you would like to die, can be recorded in any plans you make about your care. You may want to be cared for at home, or at a local hospice.
Your doctor or nurse can try to arrange support and care so that you can be cared for where you wish. But be aware that this may not always be possible. Speak to your family as well so that they are aware of your wishes.
Your wishes about where you want to be cared for and die may change. For example, if you get a lot of symptoms, you may want to be in a hospice, rather than at home. If your wishes do change, let your doctor or nurse know.
Care at home
Many people want to be cared for and die at home, where they’re in familiar surroundings and have family and friends close by. It can take some time to organise care, support and equipment at home, so it is best to organise this as early as possible.
Your GP, district nurse and community palliative care nurse will organise your care and will be your main point of contact. They will work with other health professionals to support you and your family so that you can stay at home.
If you need help in an emergency, contact the GP. If it is out of usual working hours, the GP answer phone should have the out of hours number to call. Some hospices also have a helpline you can call.
Nursing support at home
Nurses can help with medical care at home. They will usually visit you at home during the day. Your GP can refer you to the nursing teams in your area. Ask your GP or the nursing team about how to get help during the night and at weekends if you need it.
There are different nurses that can help you at home, and they provide different types of care.
- District nurses (also called community nurses) give general nursing care, medicines and pain relief. They work closely with GPs, social services, and other services to arrange care.
- Specialist nurses (palliative care nurses, hospice nurses or Macmillan nurses) help people and their families with everything to do with living with cancer. This might include managing pain and other symptoms, giving practical advice and emotional support. They work alongside the district nurses and GP.
- Marie Curie nurses or Hospice at Home nurses give nursing care at the end of life, often at night so your family can rest.
‘’Don’t hold back on asking for help or pain relief because it is the night time or you don’t want to bother anyone. It is important to call and get the medicines before the pain gets worse.’’
Personal care at home
Care workers can help you with everyday care and support, such as washing, dressing, eating and drinking, as well as help with shopping and housework. You can have long-term help or short periods of care, for example, to give your family a rest.
Your GP, district nurse or community palliative care team, can help arrange care workers at home. The hospice or hospital can also help with this if they are involved in your care.
Care is free for people approaching the last few months of life, but you will need to have an assessment to see what care you need. It is best to ask for any help at home as soon as possible so that the care you need can be arranged.
“About two weeks before Mum died, we qualified for carers who came in four times a day to wash her, change her sheets, help her with the commode and so on.”
Equipment at home
You may need equipment to help you manage at home, such as a commode (portable toilet) or hospital bed. The district nurse or an occupational therapist will see what equipment you need, and help you to get it.
Your local hospice or charities such as the British Red Cross may also be able to lend some equipment. If you are being treated in hospital, the occupational therapy team may assess you before you go home so the equipment is ready.
When it’s not possible to stay at home
It’s not always possible to stay at home, as it can sometimes be difficult to get the care or equipment that you need. If you need treatment to manage your symptoms, you may go into a hospice or hospital for a short time. You will be able to go home once your symptoms are under control. But if you need longer-term care for weeks or months, you may go into a care home. Your GP or nurse can answer any questions you may have about this.
Some people would rather not die at home. If you are at home, your family will be your main carers, which can be stressful. It may also take longer for the GP and nurses to come, especially at night or at the weekend. Some people may not want their families to link the home with medical equipment or any upsetting memories.
Care at a hospice
If you need help with managing pain or other symptoms you may go to a hospice for a short time.
You may want to spend your last days in a hospice. There are sometimes waiting lists for hospice places, so you may want to think about where you would like to be cared for if a hospice bed isn’t available.
If you are thinking about spending time in a hospice, you may want to visit one beforehand so you know what to expect. You can search for hospices near you on the Hospice UK website.
“We received great support from the local hospice. If we had any concerns we only had to phone her community hospice nurse and she visited.”
Care in hospital
You may need to go to hospital, for example, in an emergency or if you can’t get care at home or in a hospice. Hospitals have their own palliative care teams who will provide care and support to you and your family. Ask to be referred to the palliative care team.
In a care home
You may be able to stay in a care home for a short time, or long-term if you can’t manage at home. Some care homes offer nursing care, but others just offer daily personal care.
You may be able to get funding to stay at a care home – ask your GP, nursing team, hospital or hospice to help with this. You may need to have an assessment to see what support you need. If you do need to pay for a stay in a care home, ask your healthcare team what funding may be available.
Published April 2021
Review date April 2024