The hidden challenges of palliative cancer care

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The hidden challenges of palliative cancer care Medical professionals involved in the care of people with brain tumours have also echoed these concerns. One clinical nurse specialist published his views about the care and support available to people with high-grade glioma, and their families. He writes: “The diagnosis of a brain tumour often provokes pity and fear. However, this is not good enough. To professionals, the diagnosis should give rise to the realisation of the catastrophic consequences for patients and their families. This should in turn encourage us to have a better understanding of the illness, so as to allow us to provide the best possible care and support.” 61 The clinical nurse specialist’s article also references cases of senior professionals dismissing a patient’s distress over a symptom they consider ‘trivial’ in the context of the illness – such as loss of the sense of smell, or appearance changes resulting from steroid use or surgery 62 . These demonstrate the importance of trying to understand a patient’s needs on a personal, human level, and not just treating them as a collection of symptoms. Communication needs Speech problems are a common symptom of a brain tumour and, as the illness progresses, people may develop serious barriers to communication, while their intelligence is unaffected. This can be very upsetting for them and those close to them. “It’s difficult to say in all of this that one aspect was worse than any other, but if there was one it was the fact that she couldn’t communicate. And she found that so frustrating.” Peter’s wife Wendy lost the ability to speak as her illness progressed. Person-centred communication Simple things, like calling someone by their preferred name or talking about a topic that interests them, is an important part of helping people maintain their identity and dignity. However, families tell us that healthcare professionals do not always relate to them as individuals. “Although we had friends and neighbours, increasingly Wendy didn’t want to see them. She couldn’t speak, she had no hair, she had a swollen face from the steroids. Ladies are always quite proud of their appearance. She didn’t want to be seen like it.” Peter cared for his wife Wendy after she was diagnosed with an aggressive form of brain tumour. 16
The hidden challenges of palliative cancer care “They didn’t understand his condition and treated him more like someone who had had a stroke, or had dementia. They didn’t make an effort to get to know him, and would talk to him about things he wasn’t interested in, like football. They also didn’t attempt to understand him when he tried to communicate with them, such as when he pointed to a picture of me and said ‘Japanese’ to tell them I could speak Japanese. They didn’t ask the family about it to try and make a connection.” Beth felt that those who cared for her dad Terry didn’t try to understand him as a person. Difficult conversations Healthcare professionals need to sensitively communicate what a diagnosis is likely to mean for the individual and their family. For some families, the consequence of a doctor avoiding this conversation is that they are given little opportunity to come to terms with the disease being terminal. “The neuro-oncologist just kept giving us false hope. He would say ‘well, we’ve got patients who’ve survived four years or five years’ as if that was the norm, and was what we could expect. Wendy was dead within six months. At no point were we told it was incurable, terminal.” Peter’s wife Wendy died six months after being diagnosed with a brain tumour. Families and carers A recurring theme in the research is that more needs to be done to help carers and families cope with the particular, often demanding, needs associated with brain tumours 63 . Physical challenges Brain tumours can impair people's ability to move freely by themselves. Family members often take on a lot of responsibility for helping their loved one with routine tasks such as dressing and going to the toilet. This can mean a significant change in the dynamic of a relationship, which can be emotionally distressing. “Initially Chris was able to get dressed and washed independently … further through the illness he suffered from intense fatigue and depression which meant that he lost both interest and the ability to care for himself. He would struggle with making decisions and require a long time to think things through. I can’t imagine how difficult that must have been for someone who was usually so bright and active.” Helen cared for her husband Chris. 17
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The hidden challenges of palliative cancer care

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