Author:
Mark Taubert
Professor Mark Taubert is a palliative care doctor at Velindre NHS Trust and Cardiff and Vale UHB, and honorary professor at Cardiff University School of Medicine. He created the TalkCPR.com website & app and has given a Ted Talk on why language and wording is important in palliative care. As a contributing writer for international media outlets, Mark has published articles in The Washington Post, The Guardian, Al Jazeera, The Times, and The Independent, and has spoken about medical topics at the Edinburgh Fringe Comedy Festival and at Hay Literary Festival.

Positivity in cancer settings has become like a duty for some patients- and whilst it has an important role, I sometimes see its toxic side.

In a typical week in my clinic, I will see numerous patients who have been told that their cancer has spread and is now incurable. Every single one of them reacts differently to this news. Each and every person in the individual’s immediate environment reacts differently too. What is abundantly clear when I have conversations with them about their lives and how things have changed, is that society places certain expectations on an individual with a life-limiting illness, and these do not always match up with the actual facts.

A few years ago the typical story my patients would tell me went something like this: M, in her seventies and very active, would talk to me about how people in the local shop were approaching her very differently, since they had found out that she has advanced cancer. “Some actually shuffle off and pretend they haven’t seen you,” she grinned, slightly mischievously. “But the bigger problem is,” she went on, “that I feel and look absolutely fine at the moment. They look at me as though I should be tucked up in bed, with no hair and a woeful look in my eye. So I feel a bit guilty.”

There is a newer expectation mismatch that has arisen with the positivity movement, a phenomenon that is in fact infiltrating my day-to-day practice. I call it compulsory positivity. Patients and those close to them express that they feel duty bound to carry on through, sometimes toxic, systemic anticancer treatments with a defiant smile on their face. “Do not let any negativity creep in, and don’t let the family see you upset.” I see some patients take this to an extreme. Only when they reach the final weeks or days of their lives, will they allow others to witness some of their vulnerabilities because they are no longer able to hide them away. Often, sharing their worst fears and concerns can make them feel more secure, but some never even get this far.

Professor Svend Brinkmann a Danish psychologist, has written “Stand Firm: Resisting the Self-Improvement Craze” which postulates that positive thinking and its industry of books, DVDs and coaches can even make us depressed. How does it effect people in the context of cancer?

Importantly, there is nothing wrong with a positive attitude, optimism and positive psychology has its firm place in terminal disease settings. But there are two scenarios where healthcare professionals who work in these environments urge caution. Firstly, it has become increasingly common for patients to approach me suggesting that they believe strongly that a positive and optimistic outlook can stave off a worsening of their cancer, or that it might even get rid of it. But clinical researchers have tested this hypothesis and confirmed in several studies (1, 2, 3) that an optimistic mindset does not have an impact on survival in cancer settings. In one of these studies, there was no evidence that optimism was related to survival in patients with lung carcinoma. Hence, encouraging patients to be positive perhaps even represented an additional burden.

Secondly, enforced positivity and optimism at all times ignores the stark realities of life, whether you have a terminal cancer, or not. It just isn’t sustainable. The expectation that things will and must always go well can in itself create anxiety because, at some level, we know that we can’t guarantee that our hopes will come true. Which leaves many of my patients and their loved-ones in a state of uncertainty and ambiguity.

Being pessimistic or negative on occasion, can help, and patients tell me that it is good to talk about worst case scenarios. I suppose instinctively we are programmed to plan and prepare for worst case scenarios through millions of years of evolutionary struggle with conflict, threats and wars, so talking about it makes sense in many ways. But today’s positive thinking industry often will not allow for this kind of indiscipline. When patients of mine spend more time getting used to the very real possibility that things will work out not so well, and that a lot of good things fail, it can considerably reduce unhelpful and impatient expectations for the future weeks and months. By considering the worst and the most negative scenario, we do not make it more likely that it will actually happen, but it helps us, and those around us plan for many different situations.

To achieve any major life goal, convention tells us we should think positively. Picture yourself delivering the perfect job interview and it shall happen thus; envisage an impeccable pitch and it will go well; imagine yourself sailing through chemotherapy with no sickness and no ill effects and you will romp home with barely a scratch. It sounds so compelling, and it is easy to be tempted, but these strategies usually backfire, because life has different plans.

In the mini-series The Power of Negative Thinking, psychology writer Oliver Burkeman explored the virtues of negativity, including embracing our negativity and letting it flow freely. He shows how it can be a surprisingly powerful route to a calmer, more realistic outlook, which is not devoid of joy.

Positivity, with regard to our lives, careers, environment, politicians and indeed our health, was until recently assumed and expected; the happy, smiling images everywhere on social media and microblogs of recent years are good examples. Would anyone want to post a picture of themselves in the midst of a grueling radiotherapy regimen? With the ubiquity of social media, this does now happen, but it is still rare, and perhaps perceived as a taboo. The incompatibility between our positive portrayals on the one hand, and the reality of life on the other, generates the disheartening setbacks which can spoil so many days, and social media has its part to play in this.

My observation from years of working on the front line of healthcare in the UK and meeting many patients with very advanced illness is that we all feel more supported as people when we know that there are others just like us, who have gone through similar doubts, fears and prognoses. Sharing what has happened, be it positive or negative can help make sense of our own lives and realities, and most importantly, tells us that we are not alone.  One of the more successful interventions in our cancer hospital has been the setting up of expert talks, aimed at people who are about to undergo anticancer treatment; they hear from others who have gone through it, ‘warts and all’ and can make up their minds about the treatment itself, but it also helps plan for rainier days ahead. There is a sense of relief when we finally find out that our big and small fears, far from being unique and shameful, are part of the day-to-day make-up of mankind.

Our palliative care team nurses and doctors often talk about the dying moments themselves, and what a patient’s views on more extreme healthcare interventions, like cardiopulmonary resuscitation (CPR) are. To this effect, we educate patients and those who are close to them on what CPR actually involves, and show them videos about the issues at hand. This ‘Talk CPR‘ approach has been appreciated by all of our patients, despite it dealing with the very real possibility of a sudden event leading to death; you can’t get more ‘negative’ than that, so why do people find relief when they have discussed it?

Our dread that we might be the only ones to feel nauseated, anxious, frightened, lonely and existentially threatened turns out to be unfounded, opening up new opportunities for conversation and reflection surrounding our darkest fears. A pessimistic outlook does not have to entail a life stripped of any joy. Glass-half-empty people can have a wonderful capacity for appreciation when compared to their glass-half-full counterparts; many of my patients bring photos of events they thought they wouldn’t see, places they managed to visit or books that they were able to read once their pain was improved. Flabbergasted by a seemingly small success or achievement, they carry on, through the good and the bad that cancer, and many other life-threatening illness can herald.

I admire them. It is time to be honest about our unnatural approach towards positivity; there is a place for it, but negative thinking has an equal place and should never be suppressed or substituted. As human beings, we are not wired to wear a mask all of the time and it is important to face up to the one fact that is undeniable: we are all going to die. Apologies if you feel that I sound glum.