Five steps for taking control and making a plan when you have terminal cancer
Your natural instinct might be to carry on and not think about making plans for the end of your life at the moment. That’s totally understandable. Thinking about dying is not an easy thing to do. So why should you?
The more you can talk about it with your team at hospital, the better you’ll understand the choices you have. If you know what you want, and everyone else does too, there’s more chance of that happening. Feeling prepared can help to lessen the fear of the unknown.
Once the people caring for you understand your concerns, wishes and any goals you have for your care, everyone will be able to work together to achieve this for you.
Professionals call this ‘advance care planning’ or ACP.
1. Do some advance care planning
Your medical team will write down anything you want from your treatment and care. They’ll also ask about your feelings or values, as that could affect how your care is given. This could include anything from where you want to be at the end of your life, to wanting to sleep with the light on. This is called a statement of wishes and preferences.
ACP is not a legal process and a statement of wishes and preferences is not a legally binding document. It’s a guide for the team of people caring for you, and your family or partner so that your preferences are always taken into account. It will also help people to make decisions that are in your best interest, if they need to do so on your behalf.
Once you have your ACP, a copy will be kept with your GP as well as any other medical professionals who are involved in your care. You can always come back to it and make changes as many times as you like.
2. Get to know your rights
You also have the option of giving someone else control over your care. This is called Lasting Power of Attorney (LPA), which means whoever you choose will have the legal authority to make decisions about your care and treatment on your behalf, if you are not able to do so yourself. You can find more information about how to set this up from the Citizens Advice Bureau.
You can also legally refuse treatment. If you are over the age of 18 and living in England and Wales you can state any specific treatments you may want to refuse in the future. This is done using a legal document known as an ‘advance decision’.
You’ll need to do this with a doctor or nurse who fully understands your medical history as the information you can put in an advance decision can be complicated. They can explain everything before you sign it.
In Scotland an advance decision is called an advance directive, for anyone over the age of 16. In Northern Ireland and Scotland there is currently no legislation on advance decisions. However, medical professionals must still take advance decisions into account and it is likely that a court would consider it legally binding, providing the decision was made by an adult with capacity and is clear and unambiguous.
3. Think about where to be at the end of your life
If you have strong feelings about where you want to be, make sure you to talk to someone about it and get your voice heard. Although it can be a really difficult thing to think about, talking about this with your team at hospital will help them to set the wheels in motion and do all they can to make sure your wishes are met.
Hospital
Whether you can stay in hospital depends on where you are. You might need to remain in hospital because of your medical needs or you may just wish to stay in hospital if you feel more comfortable there. If you have been on a ward for a long time, then you might want to stay near the people you’ve got to know and might have good relationships with. Staff will do the best they can to make that happen, but they might also encourage you to explore the option of going home or to a hospice.
The good thing about being at home or in a hospice is that you have more control over your environment. Hospitals are well kitted out for attending to your medical needs but they aren’t always the most comforting places. If there are certain things you need, like food, music, personal belongings or space to hang out together as a family, make sure you ask.
Hospice
Hospices provide palliative and end of life care in a holistic way – that means they take into account your emotional, social and spiritual needs, as well as what you might need medically. Hospices can be a great source of help at any point while you’re having palliative care. Connecting with one as early as possible can often open up support you didn’t know was available. This can include counselling. Hospice staff will be highly skilled and experienced and able to support you as you reach the end of your life. They can usually accommodate anyone else you want with you at this time.
Some teenagers and young adults are wary of adult hospices because they don’t want to be cared for in a place that is mainly looking after older people. What’s available to you will depend on how old you are and where you live. The best thing to do is find out about your local hospice support as early as you can. There might be excellent facilities nearby that you can go and visit. They can sometimes support you in your own home, so it’s worth asking. If you look into this and it doesn’t feel right for you, then you might want to think about being at home instead.
Home
At home your friends, family, pets and possessions will be close by, and spending time in familiar surroundings can be comforting. Palliative care teams and nurses working in the community should visit and give you and your family whatever support you might need.
4. Get the right kind of care – physically and emotionally
Although your regular team at the hospital or close to home might be doing a great job, there are professionals who specialise in the kind of care you need when your cancer is terminal. The care they give is called palliative care.
Palliative care does not mean stopping treatment or ‘giving up’.
It takes all your needs – physical, emotional, social and spiritual – into account to give you the best quality of life. This means that you’ll be able to live as actively as possible, knowing that all your needs will be taken into account.
It can be given at your home or in a hospice, as well as hospital. There are trained palliative care specialists but this care is also given by people you see day-to-day like GPs and nurses. Some facilities that provide palliative care – like hospices – also offer therapies and support for your loved ones.
Link with palliative care services as early as possible by speaking to your CLIC Sargent worker or someone from the team at hospital.