What to say when someone has advanced cancer

Advanced cancer is a diagnosis no one wants – and telling someone you love that you have it can be as difficult as hearing about it for the first time yourself. FIONA DUFFY learns why good communication is vital

CANCER battles have become increasingly common, with one in two of us now likely to receive a diagnosis at some time in our lives.

When cancer becomes advanced, however, life becomes more difficult – both for the patient and their loved ones.

According to Macmillan Cancer Support, three-quarters of those living with advanced cancer feel they aren’t getting the support they need.

Now, the Advanced Cancers Coalition has published a guide which aims to help provide answers to some of life’s most difficult questions.

Here, Dr Helen Bulbeck, founder of the charity Brainstrust, and Dr Mary Burgess, a lead consultant clinical psychologist who both helped create the guide, offer their best tips for coping when the worst happens.

What did the doctor say again?

Dr Burgess said: “We all hear information differently and our understanding depends on many factors – when and how it is given, who is giving it and what we wish to hear.

“Decide what you want to get out of each meeting. What questions would you like to ask and what information do you want to receive? Set an agenda and have someone who can keep you on track and take notes so you can go over them afterwards.”

Alternatively, suggest a postmeeting debrief, suggested Dr Bulbeck. “When my daughter was having treatment for a brain tumour, we would write down what we thought had been said then compare notes to make sure we’d heard the same thing.

“If there is a misunderstanding, your consultant will clarify it.”

When should we let loved ones know?

“This is a very individual decision and it’s when you are ready,” said Dr Burgess. “Often, people find the effort it takes keeping quiet can be exhausting and overtake the benefit of not saying anything. “That’s often the tipping point. “People may want to wait until they know more or have a plan but we communicate in lots of ways – not just verbally. Loved ones might pick up on things and notice you’re tired or going to hospital a lot. Youngsters, in particular, will usually know that something is up.

“You don’t have to tell all the details – just what you feel happy to in your own time.

“Ensure that you are OK and clear with information before speaking to others. Cancer care teams can help with this.”

One of us is in denial

Dr Bulbeck said: “Avoidance or denial is a normal response in advanced cancer. In fact, denial is an important coping mechanism for some as it allows time to process distressing information. “However, continued avoidance usually increases our fear and can leave us feeling stuck and increasingly isolated. Fear – for instance, of the unknown or upsetting loved ones – can also prevent us from being open.” Dr Burgess added: “It’s helpful to ask, ‘How are we going to do this?’ Before meetings, discuss how honest you’d like the consultant to be, what questions you’re prepared to ask, is there information you don’t want to know and should one of you leave the room while the other asks ‘uncomfortable’ questions? If you can’t resolve things, ask to speak to someone on your cancer care team and just say, ‘We’re struggling a bit’.”

What does (and doesn’t) matter?

“When there is an uncertain future it’s really helpful to establish what and who is important in life,” said Dr Burgess.

“There’s a duality – it might not be a good prognosis but there is a lot of living to do. And the only way you can begin to do that is having those conversations with yourself and others.”

Have a discussion about values – what’s important, how they want to spend the time they have and what they don’t want to regret, said Dr Bulbeck.

She added: “Then, when you’re faced with a hard decision, or feeling conflicted, just go back to your values.”

There must be something else we can try?

“Managing expectations is one of the hardest areas,” said Dr Bulbeck. “The carer often feels a duty to make sure they have left no stone unturned or be a white knight on a charger who can sort everything. They, and other loved ones, may find it harder to accept, ‘This is life-limiting and we are entering a phase where treatment options have run out’.

“In reality, often the patient just wants to get on with life and have their best possible day.

“As a caregiver I would say, ‘Treatment options have run out, we are looking, now, at best supported care to make the most of the time we have.

“It’s unhelpful to keep suggesting

Continued avoidance usually increases our fear and can leave us feeling stuck and increasingly isolated

we’re not at that point – it stops us moving forward’.

“You could then turn things around by asking, ‘What can I do to help as you are obviously finding this situation difficult?’”

Emotions are running riot

“Don’t take emotion personally,” advised Dr Bulbeck.

“If someone is reacting badly, they are railing against the situation – not the messenger.

“Use strategies to acknowledge you are listening and help them channel their emotions. You could ask a simple question using the word ‘specifically’ – for instance, ‘I notice that you’re upset/angry/scared – what specifically are you upset/angry/ scared about?’

“Practical measures also help. The first thing I say to someone in distress is ‘lift your head’ because that gets oxygen into the blood.

“I encourage them to breathe in for the count of four and out for four then suggest moving to a new environment.

“Even looking out of the window can help.

“Heightened states of emotion don’t last for long. Reassure them: ‘This will pass. There will come a moment, very shortly, when you start to feel better.’”

Communicate in a non-judgmental way – and “own” your feelings, adds Dr Burgess. “So instead of asking, ‘Why are you being so distant?’, you could say ‘You seem preoccupied and I am worried about it’.

Well-meaning loved ones keep ringing/ dropping by

“Being inundated immediately after a scan, results or consultation is difficult,” said Dr Bulbeck. “Elect a spokesperson to manage all the communications and keep loved ones updated.

“One woman I was supporting spent so much time making tea she felt like a waitress.

“She wanted to be with her husband – not in the kitchen while visitors spent time with him.

“Consider setting boundaries, avoiding open access.”

And finally...

“Remember, you are not alone – and help and support is out there,” said Dr Bulbeck.

The Advanced Cancers Coalition (ACC) is a team of UK cancer patient groups improving care and support for people with advanced cancer. Download the guide at brainstrust.org.uk/advanced cancerguide/