Cancer Positivity La La Land - Time To Change Our Tune

24/04/2017 12:06

Positivity in cancer settings has become like a societal duty for some patients- but I have seen it cause harm and prevent honest discussion

In a week when members of the Royal Family have talked about grief and our unnatural approach to dealing with loss, depression and mental health more generally, it is worth reflecting on society's need for positivity, and how this may sometimes hamper honest discussion in healthcare.

The positive thinking industry with its self-help books, seminars and DVDs has grown exponentially, and some of its proponents now suggest that people with a negative outlook in life will be worse off, including those affected by cancer and other life-limiting illness.

I see many patients with incurable cancer who feel compelled to be positive, when really they would like to express grief and sadness. 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, that's the rules." I see some patients take this to an extreme. Even when they reach the final weeks or days of their lives, they do not want others to witness their vulnerabilities and fears.

Importantly, there is nothing wrong with optimism and positive psychology has its firm place in terminal illness 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 constant 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 a number of studies (Study A ; Study B ; Study C) 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 and disappointment because, at some level, we know that we can't guarantee that our hopes will come true.

Being pessimistic or negative on occasion can help, and patients tell me that it is pragmatic and even reassuring to talk about worst case scenarios. When my patients spend more time getting used to the very real possibility that things will work out not so well, it can considerably reduce anxiety over future weeks and months. I never interrupt a patient who is expressing negativity, I listen and we talk it through. 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, to plan for many different situations. 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 our existence and most importantly, that we are not alone. Others have been there before us.

For example, our nurses and doctors at the cancer centre talk quite openly about death and the dying moments, and what these typically look like. Sound too much? Well, most people with a palliative illness are quite curious to know. Staff gently explore a patient's views on more extreme healthcare interventions, like cardiopulmonary resuscitation (CPR). To this effect, we help patients and those who are close to them to better understand what Cardiopulmonary Resuscitation actually involves, and show them videos about the issues at hand. This 'Talk CPR' approach has been validated and appreciated by many patients, despite it dealing openly and frankly with the very real possibility of a sudden event leading to death; you can't get more 'negative' than that, so why do many people feel a sense of relief when they have discussed it?

It is time to be honest about our unnatural approach towards positivity in cancer and healthcare settings; there is a place for a stiff upper lip, but it should never become a duty or a mask. Negative thinking has an equal place and should never be suppressed or substituted. As human beings, we are not wired to ignore bad things and it is important to face up to the one fact that is undeniable: we are all going to die.