Choosing where to receive care in the last few months and weeks
If you have pancreatic cancer that can’t be treated and are approaching the end of your life, you can speak to your doctor or nurse about where you would like to be cared for and where you would like to die. This can be recorded in any plans you make about your care. They 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 where there are palliative care specialists available, rather than at home. If your wishes do change, let your doctor or nurse know.
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 – your GP can help you with this.
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. Your GP can refer you to the district nurse and palliative care team.
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.
It’s not always possible to stay at home, as it can sometimes be difficult to get the necessary care or equipment. If this is the case, you may need to go into a hospice, hospital or care home. If you need treatment for symptoms, you may go into a hospice or hospital for a short time and then return 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. Your family will be your main carers, which can be stressful, and it may take longer for the GP and nurses to come to help you at times, especially at night or at the weekend. Some people may not want their families to link the home with their death.
“The home became very medicalised. Mum’s bedroom was almost unrecognisable with a hospital bed, hospital table, commode, and shelves of drugs.”
“We received great support from the GP and community nurses. Equipment was provided, the GP provided daily visits, the nurses multiple visits. All of which enabled us to care as effectively as possible for our daughter and allow her to stay at home, which was her wish.”
Personal care at home
Care workers can help you with everyday care and support, including washing, dressing, shopping and housework. You can have long-term help or short periods of care, for example, to give a family member a rest.
Your GP, hospice or hospital (if they are involved in your care) can help organise care workers at home. Care is free for people in the last year their life.
“About two weeks before Mum died, we qualified for carers who came in four times a day to wash her, change her nightie and sheets, help her with the commode and so on.”
Nurses can help with medical care at home. They will usually visit you at home during the day. 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, providing 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 coordinate care.
- Specialist nurses (palliative care nurses, hospice nurses or Macmillan nurses) help people and their families with everything to do with living with cancer, working alongside the district nurses and GP. This might include managing pain and other symptoms, giving practical advice and emotional support.
- Marie Curie nurses or Hospice at Home nurses give hands-on nursing care at the end of life, often at night so your family can rest and sleep.
You can ask your GP to refer you to the nursing teams in your area.
Equipment at home
You may need equipment to help you manage at home, such as a commode (portable toilet) or hospital-style bed. You will need to be assessed for this by the district nurse or occupational therapist. Occupational therapists are professionals who help people carry out everyday activities, for example by using equipment or adaptations to the home.
Your local hospice may also offer some equipment on loan. If you are being treated in hospital, the occupational therapy team may assess you before you go home so the equipment is ready.
If you need help with managing pain or other symptoms you may be admitted to a hospice for a short time. Most hospices only let people stay for about two weeks..
You may want to spend your last days in a hospice, if a bed is available. 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.
“We received great support from the local Hospice. My daughter was an inpatient for a week and we continued to receive excellent community support from them. If we had any concerns we only had to phone her community hospice nurse and she visited.”
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.
You may be able to stay in a care home for a short time or long-term if you are no longer able to manage at home. Some care homes offer nursing care but others just offer daily personal care. You may be able to get funding from your council to stay at a care home – otherwise you will need to pay for your care. Ask your healthcare team what funding may be available.
Published March 2018
Review date March 2020