What Now? Questions to ask after a terminal diagnosis

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 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.”

“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.”

“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.”

“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.”

“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 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.”

“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.”

“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.”

“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.”

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.

“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.”

“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.”

“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.”

“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.”

There are lots of different decisions you might want to make about your treatment and care towards the end of life.

Examples are:

• ‘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?’

“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.”