EONS 2012

Understanding involuntary weight loss

Professor Jane Hopkinson – Cardiff University, UK



Weight loss among patients with cancer is really tough for the patient and also their families. You’ve been addressing this whole issue, more than addressing it, here at the conference - your organisation has done a study, the Macmillan Weight and Eating Studies. Can you tell me, first of all, why did you decide to do a study on weight loss in cancer?

Macmillan Cancer Support, so that’s a charity in the UK, have funded a programme of work that ran from 2002 to 2011, last year. I led that work, it was in response to them finding that weight loss and poor appetite are two of the most difficult to manage symptoms for clinical nurse specialists. So that’s how it came about, it was identified as an issue by clinical nurse specialists in Macmillan.

And it’s quite a big study, what did you find?

Not just one study, actually, a whole series of studies across that course of time. The two really important findings that I’m talking about at the conference are first of all what it might be appropriate to eat when you’re living with advanced cancer and involuntary weight loss and poor appetite, so how to eat well with advanced cancer and involuntary weight loss, and the second thing that I’ll be talking about is families and how nurses might support families when they’re living alongside someone with involuntary weight loss.

What are the special difficulties of dealing with involuntary weight loss, isn’t it the same as weight loss at other times in the patient’s life?

I think one of the real differences for people with advancing cancer is that they have no control over that change in their weight. So when you’re a healthy person, if you eat more you gain weight and if you eat too little you lose weight. Somebody with cancer there are three causes of weight loss: one is the cancer itself, so the cancer induces metabolic change that brings about weight loss. Then there are a set of factors called the secondary causes of weight loss, sometimes known as the obstacle course to eating, such as swallowing difficulties and sore mouth. And then there are a third set of factors which are the psychosocial factors that can contribute to weight loss.

What might they be?

They might be, for example, pressure from your family for you to eat certain things. Something that’s common when you have cancer is that you get taste change so it may be that you just can’t eat savoury things anymore because they make you feel nauseated, they make you vomit, but your family are there saying, “Come on, you’ve got to eat meat because you’re losing muscle mass and that’s how you’re going to get your muscles back, to eat a nice juicy steak.” It isn’t that people aren’t trying to eat certain things, it’s that it makes them feel unwell, it might give them pain, it make them vomit.

Family members will get desperate about this, won’t they, and perhaps pressurise the patient and add to the problem rather than solving it.

That’s absolutely right, real tensions in families. So a patient who says, “I’m being forced to eat,” living alongside a carer who says, “I feel responsible for what this person is eating, so I do put the pressure on.” And the Macmillan Weight and Eating Studies, they’ve involved over 300 cancer patients and, of those, around two-thirds have had some sort of disagreement in the family around food.

That’s the size of the difficulty you’re facing, the challenge, what answers have you come up with?

The answers, I think, for nurses are to think beyond how do we give advice on diet and fluid intake, so it moves beyond telling people what to eat to looking at feelings and thinking about how we might help people to manage the feelings that they can experience when they’re living with involuntary weight loss and poor appetite.

Feelings such as?

Such as a whole range of negative feelings, it might be anger, it might be guilt, it might be feeling misunderstood, that nobody understands what it’s like to be in this situation where you have no control over weight loss.

And are there some simple dos and don’ts about quenching those fears or altering those fears?

So your question is how can we support people to manage those negative emotions?

Yes, indeed.

One of my answers would be to work with people, not telling them what to do but to give indirect advice. A technique that we’ve been testing is story-telling, therapeutic story-telling. We’ve taken some work that has been done over in Australia led by a clinical psychologist, Berne, who argues that a therapeutic story has a structure – it presents a problem, it presents solutions to the problem and it ends with an outcome that the people in the story are happy with.

It sounds babyish.

It sounds babyish does it?

Well, I wonder what will the patient make of it?

Let’s take somebody who has taken part in the Macmillan Weight and Eating Studies. A lady who had advanced cancer and had a number of food aversions, so had quite a limited range of foods that she was able to eat. She had moved in with her mother because of her illness and her need for support and she explained to me that her mother was adding to her eating problems. What her mother was doing was on a number of occasions through the day she would list different foods – “Why don’t you try this? How about…?” And the problem for this lady, let’s call her Emma, the problem for Emma was that if a food was mentioned to her it came into her mind and it made her feel nauseous, it might even make her…

So how did the story-telling help that?

We’re only part-way through the story as it is, so I’ve told you what the problem is…

Oh, this is the story? Yes, yes.

Yes, yes. How Emma managed this was she played a trick with me, as she did with her mother, she said, “If I say ‘sausage’ to you, have you now got a sausage in your mind?”

I have, yes.

Yes, and that was what was happening to her. Her mother would suggest a food –“Why don’t we have liver today?” -  it would come into her mind and it might be something that would make her feel nauseated.

So this is actually not babyish at all, it’s sophisticated psychology and it works. Have you got a few simple things, then, to clarify this whole issue and pass on to the world community of carers that you think would help to clarify this, to make it easier?

I think as clinicians you gather up a number of these stories, you see a number of examples of how people manage difficult situations for themselves and you can construct your own stories to share with others in the way that I’ve just shared that story with you. I never told you the outcome of the story.

Go for it.

Which was Emma demonstrated to her mother the consequence of listing foods and they negotiated with one another that her mother would only list foods once a day and Emma considered that this was necessary because her mother had that feeling that she really wanted to do something to try and help, so it was really important for her mother to offer up that opportunity in the hope that Emma might consider something else but for most of the day it wasn’t on the agenda for conversation and they negotiated this.

And the choice of food was made how?

Emma actually made a list of the things that she was able to eat and said, “These are the things that I would like you to present to me. I don’t want you to talk to me about them, I just want you to present.” They happened to be things like yoghurt, porridge, milkshakes, nutritious things.

End of story, do that. Yes.

That’s how they managed that situation.

So how would you summarise all of this to anybody wanting quick thoughts to take home?

If you go onto the Macmillan Cancer Support website, there is an area called Learn Zone and in Learn Zone there is a module about weight loss and eating difficulties in cancer patients and it tells you about the story-telling technique, it tells you about some other techniques, it’s free for anybody who would like to access it and look at it.

Jane, thank you very much indeed.

Thank you.