This guide is here to help you find information and ask questions, so that you can make decisions about your treatment and care that are right for you. It will help you think through what you want to know, and offers ideas for questions to ask to get the information you need.
It also shares experiences and advice from other people who have lived with terminal illness.
Who is this guide for?
This guide is designed for people with a terminal illness (an illness that will cause you to die), but it can be used by anyone who has to make a decision about their treatment or care, for example if you are living with a serious illness that may mean a big change to your lifestyle.
Examples of terminal or serious illness are cancer, dementia, motor neurone disease, multiple sclerosis, Parkinson’s disease, heart attack, stroke, supranuclear palsy, multiple system atrophy and organ (heart, lung, kidney or liver) failure.
We talked to more than 600 people living with a terminal illness or caring for someone at the end of life. The quotes used throughout this booklet are from the insights they kindly shared. Not surprisingly, the experiences people shared with us differed greatly. The quotes in this booklet have therefore been chosen to show the range of thoughts, feelings and experiences people can have. Sometimes the quotes might contradict each other, but that is because we are all different and each person’s experience of terminal illness is different.
Why should I ask questions and make decisions about my illness?
The people we spoke to said that when they asked the right questions it helped them to make informed decisions. This in turn helped them get the care and treatment that was right for them, and helped them to live well in the time they had left.
Understanding what is going to happen in the future will help you to make plans, and can help you feel in control by giving a picture of what lies ahead.
We are all individuals. Your choices might be very different from someone else’s.
“We were not prepared for the exhaustion terminal illness brings. Put energy into making decisions, and arranging your care as early into the process as possible because further down the line you may not be able to.”
“Our choices were supported and we were prepared to make the necessary decisions, but that was because we had thought and talked about it. We knew the questions to ask and that’s important. Many on our medical team would not offer the information we needed unless we asked for it.”
“You might need to push for what you want to happen. You don’t have to accept what your medical team think is best for you.”
Other people’s thoughts and experiences
How does it feel to get a terminal diagnosis?
It is natural to feel a wide range of emotions when you are diagnosed with a terminal illness. You might feel angry because you feel more could have been done to prevent it, you might feel it is unfair, or you may now be worried about what the future will bring. You might also have feelings of denial, sadness or shock.
“I was relieved to finally know my diagnosis after almost two years of rapid physical deterioration and difficulties in finding what was wrong.”
“It was initially a shock. I didn’t take the news well and became very angry. Now I live with it, I just take every day as it comes.”
“The news was devastating, to be told you have a progressively debilitating incurable disease, at the time it felt truly hopeless, I thought I would lose my identity. But now I find it worse for my loved ones than me. I am very positive in my outlook.”
What is it like to live with a terminal illness?
As your illness progresses, you may need to make changes to your lifestyle and daily routine. You may also experience emotional changes, and these can affect you and your way of life.
“I feel as if I’m carrying a rucksack I can’t put down and is always there.”
“My emotional state changes, one day I’m positive, the next I feel downright angry.”
“It’s hard not to feel resentful of the ‘well’, although I know there are many far worse off than me.”
“For me it is both frightening and rewarding. It can be hard. Sometimes it feels like nobody else could possibly understand my day-to-day life.”
“You think you are in control but then lose it over the most trivial thing, and only then realise how stressed you are.”
The impact on family and friends
When nearing the end of your life, you may find that the people close to you become even more important. Living with a terminal illness can sometimes make these relationships difficult, but it can also bring people closer together.
“Having a terminal illness, oddly, has brought us closer as a family. We talk much more openly and I feel more able to talk about how I feel. Maybe it’s because if I don’t do it now I know I won’t be able to later. In a way it’s a gift.”
“I’m upset by the blasé attitude of some of my family. It’s like they don’t understand what’s happening, or don’t want to, but I want to talk about it and make plans for what time I have left.”
“I wasn’t prepared for people’s reactions. I have had time to get used to the idea as it’s been a long time coming. But the sorrow I see when people look at me and then cry makes it really hard.”
“I hate it when people say “You look so well!” I don’t feel it.”
“It’s hard with my disease (MS), because there is nothing to ‘see’ people don’t understand how crippling it is.”
“My daughter’s reaction was hard – she wants me to live forever but that’s not possible for me.”
Advice from others
Ask for help
“Find out what local services and support are available, such as GP home visits, specialist nurses, home care, and support with shopping.”
“Don’t be afraid to ask for help. I always call on my siblings to help make any decisions. No way could I handle some of the choices on my own.”
Talk to people
“Talk about how you feel and what you want. If there are support groups in your area, try them out. I found it really helpful to talk to others.”
“Ask for a counsellor if you need one. Talking things through does help.”
“Take the care offered. There will come a time when you can’t do some things so you’ll be glad for the support.”
Money and benefits
“Find out what financial support you are due, like attendance allowance. You may have extra expenses you don’t foresee like bedding, nightwear, and incontinence pads.”
“Ask to speak to an occupational therapist who can advise about lifts, bathing aids, toilet adaptations, and alterations to clothing to make it easier to take them on and off.”
“Ask your occupational therapist for information about how to use a bottle bedpan or commode independently, so you have some dignity in that area if you need it.”
“You may be entitled to financial help for equipment like a raiser bed (very helpful), stair lift, shower seat, and lightweight plastic drawers on wheels for medical needs.”
Other practical tips
“There are lots of little things that are worth asking about, that you might not consider. For example if you are self-administering injections, where to get the sharps bin collected?”
“We found you can buy lemon and glycerine mouth swabs to use when the dying person can no longer swallow. The care agency also told me we could use plain swab sticks dipped in pineapple juice.”
“If you live on your own you might need a ‘pendant alarm’, so you can alert social services if you are in trouble.”
“Think about if you are restricted to bed or home, what would you need to make life comfortable?”
“Make sure there is enough medication especially at weekends and bank holidays, and ensure your healthcare team have considered anticipatory drugs to control any symptoms.”
Getting the treatment and care that is right for me
Finding the information I need
It is important that any questions you have about your illness are answered. Your healthcare team should answer your questions sensitively and honestly. See the section below for more information about who you can talk to.
“The hospital staff were wonderful. The doctors and nurses shared information, and explained all aspects of my disease, treatment, and prognosis. They showed me what warning signs to look out for and what to do when something unexpected happened.”
“The medical professionals have been great in terms of information on current treatments but not much use for information on emotional support or lifestyle.”
“I wasn’t prepared for health professionals not giving you the information you need or not answering your questions at all.”
“The information shared between the NHS and the care home was poor. One major thing we’ve learned is that you should never assume that information is shared between professionals.”
What information should I be given about my illness?
Your doctor should be honest and explain to you, in clear language, what your diagnosis means and what your treatment options are. This includes explaining any medical terms that you do not understand.
They should give you all the information you need to make a decision about treatment, and should also explain the advantages and disadvantages of each treatment option, including any potential risks and side-effects. Your doctor can recommend a treatment to you but should not pressure you to accept it.
When discussing your illness you may not want to be given all of the information at once. It is important to let your doctor know how much information you want, and to tell them if you want to go over something again, or wait until a later appointment.
What if I do not understand?
If you do not understand something your doctor has said, let them know. They should repeat it or try to explain it in a different way.
Your doctor might explain things by using statistics. For example, they may say ‘90% of people treated with this drug get a good response’. Another example is ‘20% of people with this illness live for five years’. This might give you a better understanding of your treatment options or the likely progression of your illness.
What if I do not want to know?
Some people find talking about difficult subjects upsetting and would rather talk about their illness in stages, or avoid the topic altogether. You can tell your doctor how much you want to know.
Some people had a good experience speaking to their doctor about their illness. Others told us they found it frustrating.
We asked a doctor why this might be:
Doctors don’t want to unduly distress their patients and so are often sparing with the truth in order to be kind if they think the person in front of them may be very distressed by the harsh reality.
Once something has been said it cannot be unsaid so doctors are naturally cautious, especially when giving bad news.
It’s also possible that your doctor may not have the exact answers to questions you ask. If they reply ‘it depends’ to any of your questions it may mean that the answer is not definite. You can check this by asking directly ‘is there no definite answer’?
You should also remember that not all doctors are good at communication. And even those that are might be rushed or stressed at the time of talking to you. So being prepared with a list of questions is a good start.
Why ask questions?
Asking questions can help you to better understand what is happening, and the options available to you.
“I did not feel well informed on the last day of my mum’s life. She was unconscious, but I did not realise she was so close to death. Although the live-in carer was aware of this, and the surgery nurse came to the house to give her an injection to ease her breathing, they spoke to my father and myself in euphemisms rather than clearly explaining what was happening and how little time she had left. I wish I had known the right questions to ask.”
“Get all the information you can about your diagnosis, possible treatments and prognosis. Be strong – you may have to push for this. Ask about side-effects and think carefully about whether you want to undertake particular treatments or not. Your quality of life is important.”
I do not know how to start
Your job is not to come up with a list of treatment options – that is your doctor’s job. Your role is to help your doctor understand what matters most to you. Then your doctor can discuss your options in the context of your situation and your wishes. You can then make the decision that is right for you.
You might feel unsure about when to ask your questions, or who to ask. You will probably be cared for by a multidisciplinary team. This is a group of different health and social care professionals who work together to coordinate your treatment and care. You might be seen by some or all of these people, and you can ask any of them questions:
specialist in your particular condition (such as an oncologist or a haematologist)
clinical nurse specialist (who is an expert in a particular area of medicine, such as end of life or pain management)
Macmillan or chemotherapy nurse
Marie Curie nurse
radiologist (who specialises in x-rays and scans)
palliative care professionals who specialise in making sure you are comfortable and ensuring all your needs are attended to at the end of life
psychologist or counsellor
nutritionist or dietician
occupational therapist or physiotherapist
When can I ask?
You can ask questions at any time. You may prefer to be given information in stages, or to know all the information available as soon as possible.
What if I do not want to ask questions?
You may not want to ask your healthcare team questions. This may be because you do not feel comfortable talking to your doctor, or you want to do research in your own time.
Many people we spoke to said the internet was a great source of help, however it is important to only use information from trusted sources online.
“The growth in support on the internet has been a total game-changer and I wish it had been available when we needed it. It was still in its infancy when we were looking for information.”
Tips for talking to your healthcare team and asking questions
“When you are first diagnosed you might go into shock and therefore might not know the questions you want to ask until your head clears. So ask for a follow-up appointment.”
“Write it down! Make a list of your questions beforehand and also take notes when you’re there (or get the person with you to take notes).”
“You don’t have to ask all your questions in one go. You might feel tired or that you’ve heard enough for one day.”
“It’s ok to say you don’t understand and ask them to explain in a different way.”
“If you feel the conversation is going too fast you should say so.”
“If you feel like you aren’t getting the information you want don’t give up! Sometimes you might have to persevere but you have a right to know what you want to know.”
“It can help to have somebody you trust alongside you because you might not always feel well enough to speak up for yourself or remember what is said.”
How will I know what the right decision is?
The different perspectives in this booklet show there is no ‘wrong’ decision. It is about what is right for you, and that will depend on your circumstances, priorities, and goals. As your situation changes, what you want might also change. All you can do is make a decision based on what is right for you at that time.
You should be given time, information, and support to make your decision.
“When the first radiotherapy and chemotherapy combination failed, we had to decide whether or not to accept the option of a second different chemotherapy treatment, with limited chance of success and the potential to shorten my wife’s life.
Deciding whether to take it or not was difficult. We decided not to take the offer and prioritise her quality of life.”
“I was asked if I would want to be resuscitated if my heart stopped. This was tough as it felt out of the blue, but I’m glad they asked.”
What sort of decisions might I have to make?
We asked a doctor about the types of decisions you might be faced with at the end of life:
There are lots of different decisions you might want to make about your treatment and care towards the end of life.
‘Would you like medication that relieves your pain but makes you drowsy and unable to talk to your family, or would you prefer less pain relief that will allow you to be alert?’
‘Would you like a surgical operation that may give you two extra years of life but leave you with impaired mobility or discomfort, or would you prefer not to have the operation and live for a shorter amount of time but with a better quality of life?’
‘Would you like to spend the last fortnight of your life in a hospice where you will be in unfamiliar surroundings but have 24 hour nursing care available or stay at home where you will be in more familiar surroundings but the level of care you can receive will be different?’
What next? Recording my wishes
Recording your wishes helps to make sure that those around you and your healthcare team know what you want. If your wishes are written down it can give them legal weight and will make them more likely to be followed. It also stops you having to explain the same thing to lots of different healthcare professionals when you are feeling low on energy or not very well.
“Making a living will (advance decision) helped to start a conversation with my family and doctor. It gave me peace of mind – my family now know exactly what I want and won’t have to make difficult decisions on my behalf.”
“Be clear about what you do or don’t want. It is hard for health professionals to make decisions for you so it is better for everyone if it is written down.”
Many people think that their family members will be able to make health decisions on their behalf if they become unwell. This is not the case. Doctors have a duty to speak to those close to you about your wishes if you cannot make a decision for yourself, but this does not give those people the final say about your treatment.
If you would like support to think about and record your wishes, you can contact us by phone on 0800 999 2434 of email at email@example.com
Questions for my healthcare team
What are these questions for?
Like most people who are diagnosed with a terminal illness you may have questions and concerns you want to address with your healthcare team. But often these can be forgotten in the moment, maybe because you are finding it difficult to take the information in, or because the conversation goes in a different direction. The purpose of the questions below is to help you get the information you want about your care and your illness.
Who wrote these questions?
We developed these questions with the help of people who are living with a terminal illness or who have supported a loved one at the end of life. We asked people about the information they would like to have known earlier and the information that helped them to make decisions. We also spoke to healthcare professionals about the questions they often get asked.
How should I use them?
Use these questions in whatever way feels most helpful. You can tick the questions you would like to ask, and add your own thoughts or questions at the bottom of each page. The pages are perforated, so you can tear them out and take them with you to your appointment. You might also find these questions helpful when talking to your loved ones about your health and the future.
You do not have to ask all the questions. Everyone is different and you might not feel they all apply to you.
Use these in whatever way feels most helpful. You can tick the questions you would like to ask, and add your own thoughts or questions at the bottom of each page. Take them with you to your appointment. You might also find these questions helpful when talking to your loved ones about your health and the future.