This Dying Matters Week, information development nurse Teri has written a blog which talks about support and care planning for those approaching end of life.
Facing an uncertain future when you have an illness like advanced cancer can be very challenging and upsetting. It’s common to feel strong and intense emotions. Everyone will react differently and there is no right or wrong way to feel.
People with a terminal illness can sometimes feel they have to be strong - for some, there can be pressure from family and friends to stay positive and keep fighting the cancer. This can be very tiring, especially if you are nearing the end of your life.
However, having the opportunity to talk to someone about where you wish to die and who you would like to look after you, for example, can give you back a sense of control. You may have symptoms and want to know more about how to manage them, or you may want to know what to expect in your last few weeks and days of life.
This blog aims to highlight what support there is to help those approaching the end of life to make informed decisions and plans for their care.
Planning your care
Planning for your care can help you help you stay as independent as possible for as long as possible. Planning ahead can help other people know what care you would like if you become unable to make choices yourself.
To help you in planning ahead, you could talk to your:
We have information about advanced care planning and care at the end of life. We also have a Macmillan report on ACP.
Choosing where you would like to be looked after
You may wish to be looked after at home, in a hospice, care home, or in hospital. Often this depends on what you want and what help is available. The important thing is that you get the care you need and your symptoms are managed well.
If you want to be cared for at home, it’s important that you and your carers have as much support as possible. Some people may prefer to be cared for in a hospice, care home or hospital. Sometimes you might spend a short time in one of these and then go home again.
Hospices specialise in caring for people who have a life-limiting illness and may be approaching the end of their life. The staff are experts in controlling symptoms, such as pain and providing emotional support. Hospices are quieter than hospitals, and provide care to suit each person’s situation. If you are likely to need care for several months, a residential care home or care home with nursing may be more appropriate than a hospice.
We have more information about choosing where you can be looked after.
What support is there to help you?
There are specialist health care professionals who work alongside your cancer care team and GP, called the palliative care team. The palliative care team will include specialist palliative care doctors and nurses (sometimes called Macmillan nurses). They may also include other professionals, such as physiotherapists, occupational therapists and social workers.
They can help to control symptoms, provide emotional support and help you with any psychological, social or spiritual needs. The team will be able to help you and loved ones prepare for and cope with what will happen in the last few weeks and days of life.
Members of the palliative care team can see you in hospital or a hospice, or visit you at home.
You can be referred to a Macmillan nurse or palliative care team by your GP, hospital consultant, a district nurse or a hospital ward manager.
Managing symptoms and side effects
You may get symptoms with some types of cancer and side effects from cancer treatments. It’s important to let your medical team know about any symptoms or side effects you have, or if they get worse. There are many ways to help relieve symptoms and help you feel more comfortable.
Symptoms can include:
We have more information on how to manage different symptoms of cancer.
People can have very different feelings about approaching the end of their life. You don’t have to wait until you get symptoms or are nearing the end of life to start a conversation with your palliative care team. Everyone is different but having an honest conversation early on will help you plan and get the right support. You can talk to your GP, specialist doctor or nurse for information about what is available in your area.
You can also contact Macmillan’s Support Line on 0808 808 00 00, Monday to Friday 9am to 8pm, and talk things through with one of our cancer support specialists.
If you would like more information in print, we have a range of booklets about advanced care planning in England, Wales, Scotland and Northern Ireland which you can order free. We also have a free booklet and audiobook about end of life.
To see what else Macmillan's cancer information team has been blogging about, please visit our blog home page! You can subscribe to receive our blogs by email or RSS too.
We're with you every step of the way
The Macmillan team is here to help. Our cancer support specialists can answer your questions, offer support, or simply listen if you need a chat. Call us free on 0808 808 00 00.
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