I was 14 when I was told that Dad was dying.
I was sitting on the floor of our lounge. Mum said that she had some news. Sensing the worst, I fixated on the newspaper open in front of me, staring at an advert for German cut glass. It was cancer, in his pancreas, and he might only live a few more months.
They were going to try an operation, she told me and my sister, to reduce the pain. As a nurse, she must have known that this was unlikely to work, but she knew her audience and didn’t want to overload us with information. She must also have known that pancreatic cancer has one of the bleakest outlooks, due in part to a lack of symptoms in the early stages. By the time you start to notice the nausea, jaundice or weight loss, it’s too late to hope that it’s something less serious.
That night, as I wrote my diary, I could think only about how I felt. Reading it back now I wonder what it was like for my mum, still reeling from the news herself and having to tell the rest of us.
© Rory van Millingen
As a doctor, Kate Granger often deals with discussions of bad news and end-of-life issues. But there’s another reason the subject interests her. Three years ago, at age 29, she was diagnosed with a very rare and terminal form of cancer that affects soft tissue. She’s spoken and written widely about her experiences living with a terminal disease. She spearheaded the #hellomynameis campaign, to get people working in the NHS to introduce themselves to every patient they meet. She’s planning to live-tweet her own death.
Granger was diagnosed with cancer while on holiday in the USA. “I came up against some tough episodes of breaking bad news when I got back to the UK,” she says. “When I got my MRI results, I was told when I was by myself by a junior doctor who didn’t know what the plan was going to be.”
In pain and alone, she was told “without a warning shot” that her MRI scan showed that the cancer had spread. “He was basically giving me a death sentence. He sort of couldn’t wait to leave the room and I never saw him again.”
Her experiences have shaped her as a doctor. “I think I was a fairly compassionate, empathetic doctor, but having been through all I’ve been through, when I came back to work I was just so much more aware of how body language is really important, how you think about the impact of bad news on an individual more than just viewing ‘telling Mrs. Smith that she’s got lung cancer’ as a task.”
I ask several doctors to share their experiences and the patients that stick in their mind. One remembers a woman who came in soon after Christmas. She’d been in and out of the doctor’s over the last nine months or so, with general symptoms that are all too easy to ignore: feeling tired, swelling. Then she had suddenly become jaundiced and short of breath, so a relative brought her into A&E.
It was one of those situations, the doctor says, where you pull the curtain back and immediately think, “This is not good”. “On very few occasions do you touch something and say, ‘This is cancer’.” When she examined the patient’s abdomen it felt “rock hard”.
“She kept saying to me, ‘It’s going to be fine, isn’t it?’ And I’m saying, ‘We’ll do everything we can, let’s just do a few tests and figure out what’s going on.’ At that stage in my mind, I knew it was bad, but I still had to figure out exactly what flavour of bad it was.”
The woman was anxious to be home on New Year’s Eve to make a call to family overseas. But blood tests confirmed that she’d need to stay.
“She said to me, ‘Tell me the worst-case scenario.’ I looked at her. She looked at me. And in my mind I was thinking, ‘She’s not ready for this diagnosis.’ Then her relative stepped in and she said, ‘No, no, she means what’s the worst-case scenario in terms of how long does she have to stay in hospital?’
“At that moment, you realise that we all know exactly what we’re talking about, but we’re all accepting it to different degrees.”
Compartmentalisation seems to be important in coping – she mentions several times that bad news, death, is part of the job. “You have to be strong for the family. I can easily go back into the staffroom and cry my eyes out, but in that moment I have to be there, I have to be the hand to hold, or the shoulder for the patient to cry on.”
The doctor speaks of the first patient she cared for, a man with metastatic prostate cancer. She was called into his room by his wife, and as she arrived, the man took his last breath. His wife broke down onto the floor in front of her. “In that moment, you have to say, ‘I’m sorry, he’s gone.’ And you kind of just have to suck it up and be there for them in that moment because that moment is everlasting for them.”
© Rory van Millingen
It’s an office that could be anywhere, except for the clinical examination bed in the corner, complete with curtained cubicle. The A4 sign blu-tacked to the door reads: “Room booked for breaking bad news all day”.
Six medical students sit listening. “They’re real. They cry, they shout,” the facilitator, a doctor, tells the circle in front of her. Nerves crackle in the air, a few people let out self-conscious laughs. The facilitator is referring to the two actors who have come to rehearse scenarios with the students, who are one year from being qualified doctors.
Understandably, they have a lot of concerns: about getting emotional, whether or not they should touch patients, saying the wrong thing, not saying the right thing, not saying anything at all.
The scenarios are given out. The students’ eyes hurriedly scan down their sheets of paper. Cringes. Sharp intakes of breath. One scenario is based around telling a parent that their son has suspected schizophrenia. Another, that a person’s relative has unexpectedly died in hospital. One peers over his neighbour’s shoulder. “You got the short straw,” he says, shaking his head.
When the time comes, his neighbour heads for the door. “You might want to take in some tissues for this one,” the facilitator tells him. “Yeah, for me,” the young man replies.
The rest of the group watch on a live video link, seated in plastic chairs in a half-moon in front of the screen. They touch their faces self-consciously, arms crossed protectively across their bodies. The speaker hisses.
In the room sit a couple. The woman fiddles with her handbag, refusing to accept the news. The man stares silently at his hands, fists clenched around his mobile phone. “Is that true, or just something you say?” he says aggressively to the young doctor. He’s just been told that his baby, born at just 26 weeks, has severe brain damage and is unlikely to survive.
The students’ eyes dart to each other across the room. A shake of the head, a smile, a wince, sensing their colleague’s pain – pain they are all going to feel for themselves sooner or later.
© Rory van Millingen
Telling the truth takes its toll.
Researchers at Aristotle University in Greece have found, perhaps unsurprisingly, that telling a (pretend) patient that they had cancer was more stressful for a doctor than concealing the diagnosis. Doctors who don’t tell the truth, they suggest, may be doing so to keep control of the situation and avoid their and their patients’ emotional reactions.
The stress of having ‘bad news’ conversations can lead some doctors to put them off, or to deliver news in a less-than-optimal way, says Dr Laura-Jane Smith, a respiratory registrar in training who works in London.
Finding the right time and place to have conversations about things such as progression of disease can be challenging, and patients react in all sorts of ways. “Some people will want to have that conversation when they realise that they’re unwell. Some people will strongly say, ‘I’ve been in hospital before, there’s no way you’re sending me to [intensive care],” says Smith. Some just don’t want to know.
There’s also the danger of shooting the messenger. Katherine Sleeman, medical doctor and lecturer at King’s College London’s Cicely Saunders Institute, quotes from a study that found that patients perceived doctors as better communicators when they gave a more optimistic view of palliative (non-curative) chemotherapy. “It seemed as though you can inform patients that a disease is incurable but at the expense of the relationship with them, which is fascinating,” she says.
The demands that patients and families put on doctors – to find a balance between honesty, truth and hope, to be human, yet not too human, to know everything, even the unknowable – add to the stress.
“I think we find it difficult to admit that we don’t know,” says Dr Stephen Barclay, Senior Lecturer in General Practice and Palliative Care at the University of Cambridge, “because patients come to us, and we look to ourselves to be people who investigate, make decisions, make a diagnosis and have an action plan.”
He thinks that doctors find it quite emotionally difficult to acknowledge uncertainty – something born of not the doctor’s incompetence but more the unpredictability and uncertainty of so much of medicine, particularly the later stages of many diseases. “It is frightening. No one ever enjoys having these sort of conversations,” he says.
It takes a lot of conversations to find someone who can tell me – in full-colour, human, non-clinical terms – what it’s actually like to have to, on a daily basis, tell people that they’re seriously ill. Finding doctors to talk to isn’t the problem. Our conversations start promisingly enough. But somewhere along the line, everything comes through a professional filter. They become less clear, less direct, obscured in medical language, cloaked in the self-preserving bubble of the passive voice or generalised to just any doctor’s experience. “You can become upset by it but…”
For my sister, a doctor for eight years, it isn’t so much telling the bad news that stays with her, but the small, seemingly insignificant things that went along with it: noticing a pristine newspaper, unread, on the bedside locker of a patient who had just died, despite attempts at cardiopulmonary resuscitation. Finding a cheque waiting to be paid in in the wallet of a man who’d had a fatal accident.
These things – the physical manifestations of the nearly-done, not-done, never-to-be-done – seem to resonate. Unopened birthday presents, cancelled holidays, unworn clothes: all symbols of a life ending prematurely, of potential diminishing, of a future fading. They’re what remain after the practicalities of dealing with a patient and their relatives are long forgotten.
You do what you can to process it, one doctor says. Review what has happened from a medical management point of view: analyse, rationalise, conclude. Did we do everything we could? Would we do anything differently next time? Have a cup of tea, splash your face with cold water, have a cigarette, get on with the next patient.
Then your shift ends.
Self-medication takes a variety of forms. For some doctors, it’s straight to the pub. One (teetotal) doctor’s prescription: “Go home, order a pizza, eat lots of ice cream, sit in front of the TV and watch trash.” Another has a friend who’s also a doctor, and they’ve agreed that either of them can call the other at any time and vent.
Annabel Price, Consultant in Liaison Psychiatry at Addenbrooke’s Hospital, Cambridge, says that some doctors are more vulnerable to being affected emotionally by breaking bad news than others. This may be because they are struggling with bereavement or mental health issues in their own lives. Or it may happen if there’s a patient or medical case that they relate to particularly closely.
Doctors need to be resilient, but so do the organisations that they work in. “You would hope that if a situation is very difficult for an individual… the team then would help them to manage it, either by allowing them to step back or by providing them with extra support to be able to do that,” says Price.
“I would be very optimistic if I said that that works 100 per cent well every time and that all teams function in that way, but that’s the ideal that I think we should be working to: recognising that doctors are people, just as much people as our patients are, fallible humans who have our strengths and weaknesses, and weak points and struggles, just like anybody else.”
Dedicated services do exist for doctors to get help with their mental health, for example, but are those in need willing or able to find and use them?
One paper, advising junior doctors on how to look after their mental health, identifies three challenges for doctors seeking medical help. The first is stigma, including the fear that seeking help will lead to their fitness to practice medicine being challenged. The second is the idea that doctors can feel that they are somehow “letting the side down” if they need time off. The last is barriers to care. “Doctors do not make good patients,” the authors write. “Typically they do not follow their own health care advice, they self diagnose and self medicate, and they present late after ‘corridor consultations’. Once unwell, doctors are often reluctant to consult a general practitioner (even if registered) or to take time off work.”
Moreover, healthcare systems are far from perfect. Resources – including the time, space and supportive colleagues conducive to productive, healthy working lives – are often limited.
I asked Twitter if doctors need, and can get, support when breaking bad news. An Australian doctor summed it up: “Can’t even get time at work to go to the toilet while working in [the emergency department], let alone support when breaking bad news”.
When you are giving bad news about a life-limiting illness, many patients and their families want to know all they can about the condition: treatments, cures and how long patients survive. But the data aren’t always available. Studies are often small, or dated, or in populations of patients so different that findings are hard to extrapolate to the patient sitting in front of you. Everybody and every body is different – so certainty can be in short supply, at the very time when people want it most.
“How long have I got?” is an especially dreaded question. No clinician I speak to says that they give patients actual numbers, often preferring to talk about whether it is a matter of years, months, weeks or days. This is because prognostication – judging the course of a disease or condition – is notoriously hard. While there are ways to assess imminent death in, for example, a patient with terminal cancer, it can be extremely difficult to estimate how long a patient with frailty, dementia or a chronic lung condition will live.
Research shows that doctors tend to overestimate the survival of terminally ill patients, predicting them to survive more than five times as long as they end up doing.
Stephen Barclay never gives numbers to patients asking about survival. He reinforces this practice to his medical students: “I teach the students very firmly not to give numbers because often the information isn’t there,” he says. “And if the information is there, it’s average survival and by definition of an average, 50 per cent of patients live longer and 50 per cent live shorter.”
Giving people a ‘sell-by’ date is not only virtually impossible but can be harmful. “I’ve certainly had a number of patients who have been told, ‘you’ve got six months’, and when six months comes they assume they’re going to die today and that can be really difficult if they’re clearly living longer,” Barclay says. Conversely, if things are clearly moving on a lot more quickly then having a particular date in mind can encourage people to have unrealistic hope.
Laura-Jane Smith agrees that you have to choose your words carefully. “What I have realised from having spoken to patients is that they never forget that conversation, and actually quite often they don’t forget the specific words that you use,” she says.
“You fall into the trap of wanting to dress it up, and wanting not to use words like ‘cancer’ and ‘incurable’ and ‘life-threatening’,” she says. “The more that I do it, the more I try and find ways to say things as clearly as possible without being blunt and I think that’s much more effective.”
Individual words matter. Professor Elena Semino and colleagues at Lancaster University have been conducting a study of how certain kinds of language are used in communication about the end of life. They’ve created a set of over 1.5 million words, collected from interviews and online forums, where patients, carers or healthcare professionals meet to talk with their peers.
Violence or war metaphors (“battling my disease”, “keep up the fight!”) can be disempowering or disheartening for people with cancer, potentially demanding constant effort or implying that a turn for the worse is a personal failure. But in other contexts, they can empower people, helping someone express determination or solidarity, or bringing a sense of meaning, pride and identity.
“You don’t need to be a linguist to realise what metaphors a patient’s using,” says Semino. Doctors should ask: are those metaphors working for the patient at that point? Are they helpful, giving them a sense of meaning, identity, purpose? Or are they increasing anxiety?
© Rory van Millingen
While patients and their relatives may want to delay or avoid conversations that discuss death directly, this isn’t a benign act of self-preservation. A study of over 1,200 patients with incurable cancer has shown that those who had early conversations about the end of life (in this case, defined as before the last 30 days of life) were less likely to receive “aggressive care” in their last days and weeks. This included things like chemotherapy in their last two weeks, and acute care in a hospital or intensive care unit in their last month.
Are doctors obligated to give this kind of information to patients? “The GMC [UK General Medical Council] guidance is that you should tell the patient all he or she wants to know; you should be honest; you should disclose as much as you can about what’s going on,” says Deborah Bowman, Professor of Bioethics, Clinical Ethics and Medical Law at St George’s, University of London.
“The way contemporary ethics is taught, learned, understood, it’s more about different types of knowledge and different types of expert,” Bowman says. “You may well be an expert on radiotherapy, but the patient is the expert on his or her own life, preferences, values etc.”
While patients have the right to know, they also have the right not to know. Stephen Barclay and his research group looked at the timing of conversations about the end of life with patients who had conditions such as heart failure, dementia and the lung disorder chronic obstructive pulmonary disease. “There are a significant proportion of patients who appear not to want to have early open conversations, and some never wish to have conversations at all,” he says.
Barclay cautions that the urge for so-called “professional tidiness” – getting these end-of-life conversations out in the open – can lead doctors to place themselves rather than their patient at the centre of the care. There’s no one-size-fits-all approach, he says. It’s about the offer of a conversation rather than the conversation necessarily happening.
For Katherine Sleeman, what – and how – you tell patients with life-limiting illnesses about their condition is incredibly important. She believes that having open, honest conversations allows doctors and nurses to establish the patient’s preferences: everything from where they’d like to die to the level of medical intervention they’d want if they stopped breathing or suffered a cardiac arrest.
But it’s not just about medical care. The last thing somebody does may be as small as writing a letter or transferring money from one bank account to another to cover their funeral costs. But if they’re not told that they’re dying, then they’re being denied a last opportunity to exert control over their own life.
Good communication can even increase hope. Sleeman cites a small study of patients with end-stage renal disease. The researchers found that being given more information earlier on in the course of an illness could increase a patient’s hope rather than extinguish it. “With the provision of prognostic information, new threats will be perceived, but rather than annihilate hope, it provides an opportunity to reshape hopes, making them more consistent with the future,” they wrote.
“The great fear is that we’ll destroy hope by having these conversations,” says Barclay. “There is a really quite good evidence base that actually sensitive and appropriate patient-led conversations might destroy unrealistic hope, but they do generate realistic hope.”
Unrealistic hope is ultimately unhelpful, he says, because it’s never fulfilled. He remembers a patient with advanced cancer who said that his family were planning to take him on a luxury beach holiday in six months’ time. Barclay’s response: could they go a bit sooner, have the holiday in the UK? “They clocked what I was saying, had a holiday in this country the next month – had a lovely time.” Two months later, the patient died.
Though my Dad’s terminal diagnosis came nearly 21 years ago, my mum remembers his reaction clearly. “Dad turned to me and said, ‘Well, I’ve had a good life, a very happy life’.” He was reluctant to have the operation that might prolong – but not save – his life.
I remember him coming home from the hospital soon after, to rest before the operation. We’d bought him an apple turnover, his favourite cake, but it remained uneaten. Dad was propped up in bed, writing a list of things to do. He phoned a neighbour and invited him to take the tools he wanted from our garage. He read a letter an old friend posted through the door, triggering the only tears my mum remembers.
A couple of days later, earlier than planned, he was taken back to hospital. He didn’t come home again. But the short time that he lived knowing he was terminally ill gave him the chance to say goodbye. And us the same.
Thanks to Chris, Charlie and Sam for the hands featured in this article's photography.