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Impact of cachexia on relatives and family carers

Family carers are important to people living with cancer and provide practical and emotional support. Many lack the knowledge and skills to take on this work. They therefore have unmet needs for education and can find the carer role demanding, even overwhelming.
Cancer cachexia-anorexia presents family carers with stressful work. The syndrome is characterised by loss of muscle mass1, which presents as involuntary weight loss and declining physical function. Other common symptoms include poor appetite and fatigue. The patient becomes progressively weaker. They can also experience a wide range of difficulties with eating, such as early satiety, nausea, taste change and lack of hunger.  Furthermore, they can become distressed because of increasing dependency on others, because the symptoms are indicators of impending death and because their family members find their condition upsetting. As patients lose their independence, responsibilities of the family carer include helping with everyday tasks and can also involve managing both the patient’s and their own distress.

Deciding what to do can be difficult for family carers of patients with cachexia. They have to decide whether to let nature take its course or to fight back2. Many find themselves uncertain what to do for the best. They work proactively to try to prevent future problems, but against a backdrop of possible futility.  

(If he doesn't maintain his weight) he'll make himself weak, then...will he fall, will I be able to cope if he falls, and will he be able to cope if he gets weaker than he is now? Once he's bedbound then what quality of life will he have...? This is the reason I worry about his weight, to keep him on his feet really, so he will be able to do the normal things he used to. And therefore, I want him to eat. I do bully. I suppose I do bully him and say come on you've got to eat at least a little bit...
I still lay the table, the knives and forks and serviettes and flowers, cause I think, I'm not going to change now. But I can't force him to eat if he doesn't want to eat... It's disheartening, you're trying to get something into him to give him a bit more strength.
(wife Mary)

Even when family carers know that cancer can cause weight loss, they find the symptoms of cachexia difficult to understand.  

I'm not to blame for the weight loss. I know it's the cancer...
I can't understand why Dad doesn't want to eat... I mean, if we could get him to eat he could maintain his weight instead of losing it...
 (daughter Tracy)

Information and advice about cachexia is important. It can provide reassurance and help family carers decide how to best manage the symptoms and emotional impact3.
Family carer needs have received little attention. Yet meeting their needs  could have a significant beneficial impact on clinical and patient reported outcomes in cachexia.

Jane Hopkinson. Professor of Nursing, Cardiff University.


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