Please don’t say that! What NOT to say to your cancer patients

patient engagement Jan 11, 2019
 

Lately, I’ve been reflecting on this video I made last summer.

You know, there are the three little words that everyone longs to hear:

“I love you”

And then there are the three little words that no one wants to hear:

“You’ve got cancer”

But sometimes this is the harsh reality. And this has been brought into sharp focus for me when someone I know recently announced their painful news of their own cancer diagnosis.

Breaking bad news is never comfortable - for the giver or the receiver - but there are certain things to bear in mind that can make the delivery of bad news a little easier, and there are some definite no-nos that should absolutely be avoided!

Here are some of the most common mistakes people make when discussing cancer with their patients (and how to avoid them):

1. Over-complicating matters

I’m sure we’ve all been there: you ask someone a simple question and get a three-act opera in response. I know someone (who shall remain nameless!) who seems physically incapable of answering such a simple question, and then proceeds to dominate the conversation and goes into great detail about the ins and outs of the subject, boring their audience to tears.

Sometimes it’s tempting to show off our knowledge, perhaps to serve a deep-seated fear of not being seen as smart enough, but this moment is not about US. It’s about the patient, and what they need most in this moment of personal crisis is honest, simple truths. The facts, not hyperbole. The reality, not sugar-coated fluff and padding.

Keep it simple, and keep to the necessary facts the patient needs to know at that moment. Avoid using technical jargon, or if there is no alternative, explain what these terms mean simply and concisely.

2. Over-simplifying it instead and patronizing patients

Having said that, over-simplifying it can be unhelpful too - especially if it ends up sounding patronizing. And sometimes we can be like this without ever meaning to. If in doubt, ask a trusted friend or colleague to hear what you plan to say and they can tell you honestly if it’s condescending or not.

When thinking about how best to pitch your conversation, consider the patient’s individual abilities and their level of knowledge. Ask them what they understand about it already - then you know what foundation you’re building upon.

3. Fear-mongering

Another often unintentional by-product of discussing a patient’s diagnosis and treatment options with them is conjuring up fear. Using phrases like, “I’m afraid I’ve got some bad news” or “If you don’t follow this regime, you will die” may have some elements of truth to them, but they are not helpful for empowering the patient! Instead, it just stirs up fear in the patient: fear of the consequences; fear of the unknown; fear of death.

I don’t know why we humans feel the need to have a preamble to everything we say - and I’m hyper-aware of the fact that I do this with almost everything I say to anyone! I guess it’s an attempt to soften the blow, but in this instance, starting out with “I’m afraid I’ve got some bad news” is just plain unhelpful and can send the patient into panic-mode, meaning they are less likely to take onboard anything you say after that initial phrase. Instead, try starting with the true facts, as they are, and then fill in the detail as the conversation proceeds according to how much the patient feels able to take onboard. It doesn’t all have to be said at once.

4. Predicting the future

“You have X months to live” - I’m not sure this is helpful either. This might be how long an average patient in this situation may live, but we are all unique individuals, and few of us fit the “average” profile. I personally believe there is ALWAYS hope to extend life. By helping our patients to make healthier lifestyle choices, this can help reduce their risk of developing secondary disease, improve their quality of life, and ultimately, prolong the length of their life. I’ve created a free guide in which you can use 3 simple steps to help your patients choose to live healthily with cancer. You can grab your free copy here.

There is a wonderful poem by Wilfred Peterson that reads:

“While there is life there is hope,

Has deeper meaning in reverse.

While there is hope there is life.

Hope comes first,

Life follows.

Hope gives power to life.

Hope rouses life to continue to expand,

To grow,

To reach out,

To go on.

Hope sees a light where there isn’t any.

Hope lights candles in millions of despairing hearts.”

- Wilfred Peterson, 1933

This reminds me of something I heard at the Yes to Life annual conference in December last year:

“There is ALWAYS something that can be done for the patient.”

Maintaining a patient’s hope and sense of agency can be transformative for them. It can help them to realise their potential purpose. There is ALWAYS something that can be done for the patient to bring healing, even if not a cure.

Apart from anything else, telling a person’s fortune like this can also conjure up fear too, and in some circumstances, can take away their will to live, causing them to give up. There are lots of examples of Radical Remission* if we care to take time to look for them, and this can renew a patient’s hope.

(*There are numerous stories of Radical Remission in Kelly Turner’s book, “Radical Remission: Surviving Cancer Against All Odds”. You can order a copy here, but I need to let you know that I’ll receive a small affiliate commission for recommending it to you. Don’t worry, it won’t cost you any extra, and in fact, you will be helping in the fight against cancer since at least 10% of all of Essential Cancer Education’s profits are donated to a different cancer charity each month. Thanks so much!)

5. Threatening death and bullying talk

In addition to phrases like, “If you don’t do this regime you will die”, other similar threats I’ve heard patients recount in their experiences include, “If you choose that route [complementary and alternative therapy] you will die” and “You have no choice”. Sadly, I’ve heard some patients say they’ve had more of a battle with their doctors than with their cancer.

Now don’t get me wrong, I am NOT proposing patients ignore sound medical advice! Far from it. I’m simply saying that bullying patients into pursuing a particular treatment regimen (whether conventional or complementary) is not an effective and empowering way to handle things!

At the end of the day, chemotherapy is often about risk reduction - surgery is still the most curative option, despite nearly half a century of research into the collection of diseases we call cancer. There are examples of people who refuse chemo and live, but there are also examples of people who receive chemo and die. Instead of sitting firmly in the chemo or no-chemo camp, help your patients to weigh up all the options available and make the best decision for them based on their individual needs, wants and circumstances at the time.

6. Being dismissive

Unfortunately, this is also a pretty common complaint I hear from patients - that someone in their multidisciplinary treatment (MDT) team has been dismissive, rude or condescending towards them at some point or another. Now, I know we all have good days and bad days, and I also know that how we react to a person is often about that person, but it’s important to bear in mind the painful situation a cancer patient finds themselves in.

Telling them to “calm down” or dismissing their fears or anxieties about a new pain as “nothing serious”, or saying “Cancer just happens: it’s a matter of bad luck” can be terribly disempowering for a patient. Not only this, but it lacks empathy and offers no chance of an effective partnership between the patient and practitioner.

Instead, listen to the patient’s complaints and concerns. Really listen, and ask if there’s anything else that’s concerning them. This will make them feel cared for and give them a sense that they matter, which of course, they absolutely DO!

Communicating cancer clearly

Here’s a quick re-cap of the 6 things you can do to avoid the common mistakes people make when talking about cancer with their patients:

  1. Keep it simple
  2. Find out what they know already
  3. Get straight to the point with the true facts and without the fluff
  4. Empower your patients to make healthier lifestyle choices to prolong their life
  5. Help your patients weigh up their options
  6. Really listen to what your patient has to say

If you take ONE thing from this article, I hope it’s this: the patient’s experience is the most important thing and listening to them - really listening to them - can go a long way towards building an effective patient-practitioner relationship, one in which the patient feels safe, that they matter, and where they can thrive. In the free guide that accompanies this article, I show you three simple steps to help your patients choose to live well with cancer. You can grab your free copy here.

And that’s not all...I have some super-exciting news about some free live workshops I’m delivering VERY soon. If you want to be among the first to hear about these, sign up here.

© Essential Cancer Education



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