By Fenella Souter
Dasha Ross says that denial played a big part in coping with the shock of husband John Pinder’s cancer diagnosis. Credit:Tim Bauer
In May 2013, Dasha Ross and her husband of 27 years, John Pinder, were preparing for a grand adventure. Ross is a well-respected documentary maker and Pinder was a prominent figure in the comedy and cabaret scene. In his prime, the producer was a big, ebullient man, famous for his signature giant yellow glasses, booming presence, and pack-a-day smoking habit. It was Pinder who co-created the Melbourne International Comedy Festival in the 1980s. There was nothing funny, however, about the news that lay in store.
So there they were, aged in their 60s, with their daughter grown up, free to do as they pleased. They had already run a hotel in Sri Lanka during a wild career change and now the scheme was to sell their house in Sydney, move to Barcelona indefinitely and set up an Airbnb business. “I’d just had a big 60th birthday party for 150 people,” recalls Ross. “I was on top of the world and so was John. One month later, he had a routine medical check-up as part of our visa application. That was how it began.”
Pinder, she says, hadn’t had any symptoms to suggest anything was wrong. However, some abnormalities showed up in his blood markers and a urine test. The GP said he “didn’t like the look of them” and arranged for Pinder to see a specialist.
If you’ve ever had that kind of conversation in a doctor’s surgery, you’ll recall the lurching feeling those words produce, the skin on your forehead tightening, the blood draining as you conjure up all nightmare possibilities, even when the GP adds, “Look, it may be nothing but I’d just like to be sure.”
For most of us, it will be nothing. For some, there’s a life-altering diagnosis lurking on a sheet of paper somewhere. A mind-numbing blow about to descend. Does it make a difference how that blow is delivered?
Pinder and Ross, both optimists by nature, were in for a terrible shock. More tests showed Pinder had a large tumour in his bladder. Ross’s recollection – and we’ll come back to how accurate recollections are at times like this – is that in that first meeting, they were told it was serious but that the specialist avoided saying “the C word”.
“He never referred to cancer,” Ross says. “So this entire conversation took place where he spoke about ‘the tumour’. Now, that was correct, in that it was a tumour in the bladder, but it was like he was being coy. I felt like saying, ‘Is it cancer? Is that what we’ve got here?’ I needed to know what we were dealing with.”
The specialist may have felt he was being kind, or at least accurate. Few words in the English language alarm people more than “cancer”, and doctors have generally always struggled with how to break bad news to patients – not just about cancer but about other terminal or life-changing illnesses, whether it’s motor neurone disease, multiple sclerosis, type 1 diabetes, a failing heart or Alzheimer’s.
“Denial is a safe place and that’s where he went.”
They also need to be sure of what they’re dealing with. It was the subsequent exploratory surgery that confirmed Pinder had muscle-invasive bladder cancer, an advanced form of a cancer often linked to smoking.
“I asked lots of questions about the treatment and questions about survival rates,” Ross remembers. “He didn’t offer the information but he’d answer if I asked. He gave the percentage breakdown for survival. The long-term prognosis for people with bladder cancer is not good.
“I needed information. It’s how I deal with things when I’m anxious – I try to find a solution. John’s way of dealing with the cancer – and I understood this – was to steel himself to go through this process, which he suspected was going to be hideous on every level. Denial is a safe place and that’s where he went.”
Ross’s impression that they were getting information only if they asked for it is probably correct to a point. It echoes the experiences of other patients and families who have been surveyed (many also mention feeling “rushed” in their brief appointments with specialists, rarely getting through their list of questions). There are protocols in much of the Western world now for these difficult encounters and one is that medical professionals should feel out what people want or need to know at any particular time, rather than dictate the discussion.
“Looking back, I realise that it is incremental, the way they give you information,” Ross says. “They’re not laying it all on with a trowel in the first instance, like a bucket of cement that’s going to set and overwhelm you. It’s like they don’t want to alarm or upset you, or perhaps catastrophise the situation. That might work for some people but I wanted to know everything I could.”
Back then, the diagnosis was sobering but there was a plan of action. The outlook was still hopeful. That’s what they heard. That’s what they clung to. Barcelona would have to wait.
Dasha Ross with her husband, John Pinder. While both were optimists, Pinder’s diagnosis left them in shock.Credit:Courtesy of Dasha Ross
“Breaking bad news” is such a significant part of medicine that there are hundreds of academic papers on the subject. It even has its own acronym, “BBN”. It’s the emotionally charged side of medicine many young doctors, and even some highly experienced ones, dread. No wonder there’s an inclination to sweeten the facts, muddy the waters, or hold back some of the harsher truths until the time seems right – which might be never.
The very act of delivering bad news can more than double a doctor’s heart rate, says Stewart Dunn, Professor of Psychological Medicine at the Royal North Shore Hospital’s Sydney Medical School. And that’s when the doctor is just delivering bad news in a training session, with an actor role-playing the patient. For example, a woman who has to be told her husband has suddenly died from a second heart attack.
“The highest increased heart rate was with a very experienced, very senior doctor,” says Dunn, of the 2015 study he conducted with Dr Joanne Shaw. “When the door opened and she [the ‘wife’] walked into the room, his heart rate was 168. Most people’s heart rate is around 70.”
Professor of psychological medicine Stewart Dunn says the very act of delivering bad news can more than double a doctor’s heart rate.Credit:
Dunn has noticed three distinct styles of delivering bad news. “There are the ‘blunters’, who do it in less than 30 seconds. The person walks in, ‘I’m very sorry. Your husband has died.’ Bang. Then the ‘forecasters’, who do it in two minutes. They fire a few warning shots. So you hear the warnings of bad news coming. Then there are the ‘stallers’, who actually want you to say, ‘Oh my god, has he died?’ so they don’t have to say it. It’s almost like they’re saying, ‘I want you to feel safe to deal with this reality but you need to say it yourself, so then I know you’ve got it’. The longest we saw took six minutes. He used every euphemism in the book before he could bring himself to say ‘passed away’.”
Interestingly, one “blunter” received the highest rating from the observers, in terms of causing the least distress. Not because of his bluntness, but because he allowed time after delivering the news for the shock to penetrate. Says Dunn: “The woman had to go from, ‘I went home from the hospital this morning after seeing a husband who was getting better. You’re now telling me I live in a world without a husband.’ To make that transition is huge. It takes three minutes before even the first bit of that starts to sink in.
“There’s nothing you can say in those three minutes to change it. Some doctors would keep badgering, ‘You have to realise …’ and so on. Instead he colluded with her in her disbelief.
“People often want to know how can they use their time. That’s what they’re really asking you.”
“He said, ‘I can’t believe it either, I saw him this morning and he was sitting up in bed making jokes,’ and so on. By the time they’d got to the end of that time, they’d both travelled the same path.” The difference being, of course, only one of them had lost a life partner. On the other hand, only one of them has to deliver life-shattering news to people, day after day.
We take it for granted now that a doctor will tell us the bad news, if there is any. That wasn’t always the case. Around the world, medicine has a long tradition of doctors withholding information from patients. It’s still common in certain cultures for the patient not to be told a serious diagnosis, the idea being that the family, not the ill person, carries the burden of knowing. It’s still an issue for some families and their doctors in countries including India, Turkey, Iran, Japan, Italy and Spain.
In fact it was only a couple of generations ago, back in 1961, that a US study found 90 per cent of American doctors preferred not to disclose a cancer diagnosis to a patient. (In 1979, just 18 years later, the same research questionnaire showed a complete reversal and 90 per cent of physicians preferred to disclose this information to their patients.)
It wasn’t unknown for doctors in Australia to withhold medical information like this back then, either. A husband would ask for his wife not to be told, for example, or children would ask that an elderly parent be kept in the dark. That request still happens within some cultural groups here. (Dunn remembers a man once holding a knife to his throat and threatening to kill him if he told his wife she had cancer. The professor took it in his stride. He says the woman knew she had cancer but understood her husband’s protectiveness. Dunn and the patient worked out a kind of code to get around it.)
Withholding a distressing diagnosis was a kind of “benevolent deception”, operating within a paternalistic model of medicine where doctor, or tradition, knew best. And, of course, there were fewer treatments on offer back then. It was felt the truth would only depress patients and possibly hinder their recovery or survival.
Even now, good specialists are still mindful of how certain information, and their own manner, can affect a patient’s health. Western medicine is increasingly acknowledging a mind-body connection. For example, severe depression and chronic stress in cancer patients have been shown to affect the immune system. But how much does something like “positive thinking” help? It’s hard to say.
“If you’re positive and you have grounds for sustaining that positivity, yes, that would have a benefit,” says Dunn. “All the studies looking at survival have found improved quality of life in people who are optimistic. Not all of them have been able to show longer survival.
“But if someone is blindly optimistic in the face of continuing evidence the disease is progressing, that creates such a cognitive dissonance that it becomes destructive. It can also get to a point where you are being so ruthlessly optimistic that you refuse to discuss things with other people that you must discuss.”
Patients often say they want “the truth”, but how much truth do they actually want? The whole truth or just the good bits? Do they want to know, for example, how long they’ve got left to live?
“People often want to know how can they use their time, how long they’ll be well enough to do the things they want to do. That’s really what they’re asking you, not exactly when they’re going to die,” says Professor Fran Boyle, a medical oncologist who took over from Stewart Dunn as director of the Pam McLean Centre at Sydney’s Royal North Shore, a centre dedicated to clinical communication skills training.
“So the conversation might be: ‘Can I take a trip to Vienna in two years’ time’ and a way of answering that might be, ‘No, but you could this year.’ Or ‘Will I live to see my daughter start school?’ ‘Maybe, but you’ll certainly live to see other milestones.’ ”
Medical oncologist Professor Fran Boyle says people often want to know how long they’ll be well enough to do the things they want to do.Credit:
Back in those early months of 2013, Dasha Ross remembers how hopeful she and Pinder were. But much of that hopefulness, it seems, rested on a misapprehension. Pinder understood that a short initial operation to remove the tumour – via a cystoscope put up the urethra – might be enough to resolve “the tumour problem”.
“But that first operation didn’t resolve it and John felt cheated,” Ross says. “He felt he’d been led to believe that removing the tumour would be the end of it. The urologist had mapped out the best-case and worst-case scenarios but, of course, John only heard best-case. So when he came out of that surgery, which was so painful, and they did the post-operative test to find that there were still traces in the wall of the bladder, he felt he’d been sold a pup.”
When people are already in a state of high anxiety, they rarely hear everything that is being explained to them. In the late 1990s, Dunn and colleagues Martin Tattersall and Phyllis Butow ran a study that gave patients a takeaway recording of their initial consultation with an oncologist. Even after listening to it another two or three times at home, 10 days later the patients only recalled about 25 per cent.
Dunn points out that places such as the Sydney Medical School now put students through compulsory training in how to communicate with patients, empathise and handle emotions – subjects that were once regarded as peripheral to the practice of medicine. But psychology can only go so far in calming a thudding heart or opening the paralysed mind of a patient whose life is unravelling in a medical suite. Even with a companion by our side, even with our jotted notes, many of us will be making the most important decisions of our lives – on the best way to go forward – having taken in only a fraction of what has been said.
Breaking and hearing the news of an initial diagnosis is challenging enough, but at least the doctor can soften the blow of “yes, you have cancer” with the tagline: “… and here’s what we can do about it”.
It’s infinitely more challenging to have to tell a patient their treatments have failed, or that the illness is terminal. No doctor or patient wants to have that conversation. In the 21st century, we have come to expect miracles, not disappointments. Medical technology is focused on defying death at any cost. It’s not in the business of making its inevitability easier to accept. And that has consequences.
US surgeon and writer Atul Gawande says patients with a terminal illness – and their families – can become focused on “beating this thing” at any cost – often allowing that to overshadow issues of quality of life. Credit:Quentin Jones
As US surgeon and medical writer Atul Gawande observes in his thoughtful book Being Mortal, patients, or very often their families, can become so hooked on “beating this thing” that they become blind to what once mattered in terms of quality of life. They’ll try anything, even aggressive end-of-life treatments almost certain to cause only pain and suffering.
Gawande himself remembers discussing the possible benefit of an experimental treatment with a patient with a very advanced cancer, even though he knew that benefit was “sheer fantasy”. “Discussing a fantasy,” he writes, “was easier – less emotional, less explosive, less prone to misunderstanding – than discussing what was happening before my eyes.”
“It’s much easier to give another dose of chemotherapy than it is to say, ‘It’s not working, and how would you like to spend the last four weeks of your life?’ ”
That’s in the US, home of medical litigation. However, that awkward dance around the cold, hard truth can happen here, too.
“It’s much easier to give another dose of chemotherapy,” agrees medical oncologist Fran Boyle, “than it is to say, ‘It’s not working and how would you like to spend the last four weeks of your life? Would you like to spend them with mouth ulcers or not? Or would you like to spend them at home with your family rather than being carted off to hospital with a fever?’ ”
A kind of double bind creeps in. Doctors may be waiting for patients to ask key questions and to signal they want to have that blunter discussion. Patients may also assume their doctors are actively recommending this course or that, because wouldn’t they have advised against it otherwise?
An Australian woman, who didn’t wish to be named, told Good Weekend about her brother, who died from an aggressive multiple myeloma, aged 53. The cancer was already terminal when diagnosed and he was offered palliative chemotherapy. “The first round didn’t do anything,” his sister remembers, “and he felt absolutely dreadful. He looked into it all and decided he’d rather die peacefully than have any hopeless prolonging with more chemo.”
But here’s the thing. “When he told his doctors, they said they were enormously relieved, that that’s what they would have done in his circumstances but they hadn’t wanted to guide or push him to that decision.”
“A lot of specialists haven’t come to terms with the fact that a terminal diagnosis isn’t a reflection of failure on their part.”
Boyle agrees that some oncologists and professionals, who are reluctant to be seen as bullying or high-handed, may have stepped out of the frame a little too much. “We swung so far away from paternalism that we forgot about maternalism,” she says. “That idea that mother is really attuned to your situation, can listen and give you good advice. That’s probably what everybody wants in their doctor. You don’t want somebody to just clinically hand you a list of choices and say, ‘Here, choose from the menu.’ But they are tough conversations and you do feel like you’re treading on eggshells.”
Gawande’s point is that while there’s nothing wrong with hoping to beat the odds, people should also be prepared for “the outcome that’s vastly more probable”. That preparation might include discussions about accessing, much earlier in the piece, the many supports and comforts offered by palliative care. Several studies have shown that early palliative care can help patients not only to live better but also to live longer.
Palliative care specialist aka “the Deathtalker” Molly Carlile, says we have forgotten how to make death a part of life.Credit:
With luck, that talk takes place when it should. All too often it doesn’t, says Molly Carlile, a Queensland-based specialist in palliative care who is known as “the Deathtalker”. She’s a great believer in “death literacy” and the notion that the more we talk, the less we fear. She and her family find it normal to spend part of every Christmas sitting around the table updating their advance care directives.
“We have forgotten how to make death a part of life,” Carlile says. She remembers being saddened by an article about a well-known young woman dying from breast cancer. “It was heartbreaking. There she was, actively dying, unconscious, Cheyne-Stoking in bed [the stop/start breathing that indicates death is very close], and her father lent down and said to her, ‘Don’t give up the fight’,” Carlile recalls.
“Look, I understand where that comes from but if he had said, ‘I love you so much and I’m going to miss you,’ that would have been so different.”
Doctors are human. They hope for the best. They like to give it a shot. They can also be reluctant to admit defeat. “They’re in the business of fixing people,” says Carlile. “Not just doctors, but also nurses, allied health people, notoriously feel a sense of failure if they’re not able to fix the problem. A lot of specialists haven’t come to terms with the fact that a terminal diagnosis isn’t a reflection of failure on their part.”
Carlile isn’t suggesting that health professionals should brutally dash all hope or not offer new or experimental treatments – or that people shouldn’t try them if that’s what they want. She does, however, have strong views on the meaning of hope and the benefits of talking openly, with empathy and compassion. “Hope is about realistic hope, in my view. If people have a poor prognosis and you have that conversation with them, then you can refocus and say, ‘Okay, what’s really important to you now? Is managing your physical independence, or your fatigue, more important to you than managing pain?’
“The ultimate goal is to enable them to do as much of the stuff that matters to them, not you, in the time they have. If it’s, ‘I want extra time and I don’t care if the side effects are terrible,’ that’s a fair choice. If it’s, ‘I’d rather have less time and not have my head in a bucket for the next two months,’ that’s a fair choice, too.
“Now, you can’t have that conversation unless the person is aware they don’t have as long as they may have anticipated.”
You might imagine that, faced with a terminal diagnosis, people would have many deep and emotional talks at home about death, fears, the other partner’s future, and everything in between. Not always. In fact, many people are more likely to pour out their innermost thoughts and fears to a trusted GP or sympathetic nurse, than “burden” their own partner, and vice versa.
Three years ago, Sarah Rosemont’s husband Alex (not their real names) was diagnosed with Stage IV colorectal cancer and Stage IV prostate cancer. Both of them have known from the start that his illness is incurable, but they have studiously avoided talking about how long he might have, or about Rosemont’s life beyond his.
“It’s like speaking about it makes it real, and therefore maybe it will happen quicker,” Rosemont says. “You feel like you might conjure it into being. Neither of us have talked about it. We only talk about the treatments. It’s hard to know if you’re protecting them or they’re protecting you.”
When I put the same question to Alex, he says: “I used to think a bit about dying [when I was first diagnosed] but I don’t anymore. Sarah and I really don’t talk about it. What’s there to talk about? I don’t see it as something we should be dwelling on.”
Molly Carlile says it’s understandable if people facing a pencilled-in date with death don’t want to talk about it. However, there can come a point when they do, even if it’s just to weigh up whether or not to continue a treatment. It’s a conversation well-meaning friends or family can unwittingly deflect or block.
“I’ve known carers who haven’t known how to pick up on the cues that the person is throwing them,” says Carlile. “A lot of people in that situation throw cues all the time. Like, ‘I doubt I’ll be around next Christmas,’ and the family goes, ‘Oh, don’t be silly, of course you will. What would Christmas be without you?’ The whole conversation is snuffed out like a candle. So then they try other things like, ‘I’d really like to do an advance care plan,’ and it’s, ‘Oh, you don’t need to do that yet. What are you thinking about that for now?’ So all of the attempts by the person to say, in code, ‘I want to talk about this,’ get shut down.”
It’s not surprising we want to run from the subject. What’s a better response? “Stop what you’re doing,” Carlile advises. “Sit down with them, take their hand and say, ‘Tell me about that, explain to me what you mean.’ Show them you’re ready to listen if they want that conversation. They’ll let you know if they don’t.”
Faced with a terminal diagnosis, some people prefer to talk with those other than their partner or friends.Credit:Getty Images
We’re never truly prepared to lose people we love. It’s why we only hear what we want to hear, clinging to any small comforts as we reckon with the unbearable. Even with everything Sarah Rosemont had been told or had read about the likely course of her husband’s type of cancer, she was shocked when a scan in January showed his tumour had grown significantly and metastasised further.
“It was our first time back after the Christmas break and the oncologist said, ‘I haven’t got good news. I’ve got the scan and the blood results, and the drug that you’re on is no longer working. So now we have to think about how we go on.’ And then she was saying, ‘There will be no pain and obviously we’ll keep you at home as long as we can while Sarah can look after you. There’s a wonderful palliative care unit at [the local hospital].’
“We were sitting there in shock. It was like we’d gone from, ‘How was your Christmas and your latest treatment’s not working’, to ‘palliative care and there’ll be no pain and you’re on your way out’. She didn’t say that last bit, but that was the indication. It was like, ‘My god, what just happened to us? This is really heavy.’ ”
Rosemont now thinks her understanding of Alex’s progress over the three years, or her wishful expectations, didn’t fit with what the oncological team thought it was making clear. Knowing the illness wasn’t curable hadn’t stopped her shining the most positive light on the results.
“I think it was this word ‘tracking’,” Rosemont says. “They’d say, ‘It’s tracking as we expect’ and that sounded promising. But they meant, as they expect. As in, what you’d expect with a Stage IV cancer. What I expected was completely different. The speed of it shocked me. It was like we’d gone from a jog to a sprint.”
For Dasha Ross and John Pinder, the news went from bad to good, early on. After an eight-hour operation in the middle of that first year to remove his bladder and prostate, followed by months of chemotherapy with appalling side effects, Pinder was declared to be in remission. They weren’t promised it would be forever but they were given the green light to move to Barcelona. They had only been there four or five months, however, when Pinder started getting back pain. And suddenly the news went to awful.
Dasha Ross says knowing her husband’s life expectancy forced her to go on autopilot: “I just went numb and into kind of management mode.”Credit:Tim Bauer
In October 2014, he flew back to Australia for tests. The cancer had metastasised to his bones. He was told it was terminal and immediately put on a palliative care regime at home, with a life expectancy of between six to 12 months.
Was it helpful to have an idea of how long he had? “I don’t know if it was helpful,” Ross says now. “But it was shocking. The only way I could deal with it was to go on autopilot. I just went numb and into kind of management mode. Suddenly he had all these aides – special chairs, a walker, a wheelchair. It was too dreadful, too awful. But John completely accepted that he was dying. He said he’d done everything in life he’d wanted to do.”
Now she was the one running from the painful truth. Frail and ill and terribly thin, Pinder developed a high fever and delirium one week in February 2015. An ambulance took him to the hospice. Yet even with all those red flags – fever, ambulance, terminal cancer, hospice – Ross was stunned, a few days later, to learn he had almost died. “I almost fell through the floor when they told me that.”
She felt “betrayed” that the palliative care staff, for whom she otherwise has great respect, hadn’t spelt it out at the time. They, presumably, thought she realised death was hovering. “It was denial,” she admits now. “It was always denial. Emotionally I couldn’t accept he was going to die, even though my rational mind heard that. I heard John say on several occasions, ‘I have nothing to regret and I’m ready.’ But I wasn’t ready for him to go.”
He went back home, but they avoided talking about the inevitable, or how she would cope on her own. “It was just an ever-present truth. We were dealing with the day-to-day moment of it all.” Instead, they talked about fabulous times they’d had together. Streams of friends dropped in to reminisce while Pinder, buoyed by opioids, held court.
About four days before his death that May, Pinder called her over. “He used to sleep a lot but one day he said, ‘I need to have a serious conversation with you. Come and lie down here.’ So I lay down beside him. He said, ‘I can’t do this any more, it’s too hard. It’s not going to get any better and I can’t stand the pain.’ ”
Ross looks sad at the memory but then laughs, remembering how life slips between the profound and the absurd. “The next day we lay down together again and went through all the passwords, which was hilarious because he was so zonked out he couldn’t remember them all. It took hours.”
Two nights later, Pinder fell over getting out of bed and was taken back to the hospice. He died there, aged 70, with Ross and their daughter present, close on two years from that day in the GP’s office. In a final piece of Pinder showmanship, choreographed by him before his death, some of his ashes were blasted off the balcony of Sydney’s Bondi Icebergs, with fireworks and tears and cheering. A loud, wordless salute to a life well-lived, and a death foretold.
To read more from Good Weekend magazine, visit our page at The Sydney Morning Herald, The Age and Brisbane Times.
Have a Good Weekend all week
We deliver the best of Good Weekend to your inbox so it’s there when you’re ready to read. Sign up for the Herald‘s Good Weekend newsletter here and The Age‘s here. Sent every Saturday.
Most Viewed in National
Source: Read Full Article