What's in the 'End of life care' section?
- End of life care for pancreatic cancer
- Coping when you are approaching the end of your life
- Talking about dying
- Your care towards end of life
- Where to receive care
- Making plans about your future care
- Symptoms towards end of life
- Making plans for after you die
- Information for families at the end of life
- Emotional support for you
- Caring for your loved one
- Saying goodbye
- Signs that the end of life may be near
- When someone with pancreatic cancer dies
- Coping with loss
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
You may want to be cared for and die at home. Your GP, district nurse or community palliative care nurse will organise your care at home and will be your main contact. It can take some time to organise care, support and equipment at home, so it is best to organise this as early as possible.
There are different nurses that can help you at home, and they provide different types of care. Your GP can refer you to the nursing teams in your area.
- District nurses (also called community nurses) may provide a lot of your palliative care, including nursing care and emotional support. They will work closely with GPs, social services, and other services to arrange your care.
- Specialist nurses (palliative care nurses, hospice nurses or Macmillan nurses) help people living with cancer and their families. 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 and personal care at the end of life. This is often at night so your family can rest.
- Marie Curie has more information about care at home. They also have information about Marie Curie nurses and hospices.
If you need help in an emergency, contact the GP or district nurse.
‘’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.’’
Can I get personal care at home?
Care workers can help you with everyday care and support, such as washing, dressing and eating. You can have long-term help or short periods of care, for example, to give your family a rest.
Ask your GP, district nurse, or community palliative care team, to help arrange care workers at home. The hospice or hospital can also help with this if they are involved in your care. It can take some time to organise care workers. You might need to contact different teams and agencies to get things organised.
Funding for personal care
In England, Wales and Northern Ireland you may be eligible to have all your care arranged and paid for by the NHS. This is called continuing healthcare. Your doctor or nurse will do an assessment to see if you are eligible. If your health is getting worse quickly, you may be able to have your assessment fast-tracked. Ask your medical team if this is an option.
In Scotland, you need to ask your council’s social care team to carry out an assessment to work out what you need. Tell the social care team if you need the assessment urgently.
“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. If you are being treated in hospital, the occupational therapy team may assess you before you go home so the equipment is ready.
Your local hospice or charities such as the British Red Cross may also be able to lend some equipment.
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 that you need. If you need treatment to manage your symptoms, you may go into a hospital or hospice for a short time. If you need longer-term care for weeks or months, you may go into a care home.
Care at a hospice
Hospices provide specialist palliative care. You can go to the hospice for an appointment or for the full day to use their services before returning home. Or you may stay at the hospice for a short time, for example to get symptoms under control.
“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. Hospitals have their own palliative care teams who should provide care and support to you and your family. If you are not seen by the palliative care team, you should ask to be referred.
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 and palliative care. If the care home does not offer palliative care, the community palliative care team should still be able to see you.
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.
Questions to ask your healthcare team
- Can you refer me to the palliative care team?
- What palliative care services are available locally?
- What support is there for me to be cared for at home? How do I get this support?
- Who should I contact in an emergency, at night or at the weekend?
- Can you help me plan my future care?
Published August 2024
Review date August 2027