RECEIVING a diagnosis, even a bleak one, can bring relief to patients. But if the disease is “low prestige”, or a solid diagnosis is not available, patients can be left isolated, depressed, lonely, and even retraumatised.
Associate Professor Louise Stone, from the Academic Unit of General Practice at the Australian National University, told MJA InSight that patients with medically unexplained symptoms made up as much as a third of a GP’s practice.
“It’s the patients who have fatigue, non-specific pain, who might fall into the fibromyalgia cluster, or the chronic disease cluster,” she said. “The diagnoses are often quite fluid because they’re about syndromes rather than a solid diagnosis.
“And those patients live in a terrible void, where they’re seen by the community as malingering and not having anything real because they can’t come up with a disease name that anyone believes.”
Speaking in an exclusive MJA InSight podcast, Associate Professor Stone, who is a practising GP specialising in mental health issues, said: “Then of course, there’s a cluster of patients who have terrible backgrounds and multiple layers of trauma on trauma on trauma and it’s, quite frankly, not surprising that they’re turning up with physical symptoms.
“For all of those patients, the disease prestige is very low – they’re often spoken of disparagingly as ‘heartsink’ patients. People put up all sorts of boundaries to manage them or try and exclude them from services because they’re very hard [to manage].
“But they suffer, and they die. And they often die by suicide because the pain becomes unbearable. They’re often excluded from working, they’re excluded from the social world and they suffer greatly.”
Patients with no diagnosis or “low prestige” diseases required a change in thinking from GPs and other practitioners, Associate Professor Stone said.
“We need to think of these patients as a cluster and we need to think strategically about how, as a health service, we’ll respond to those patients.
“At the moment, most of them end up in general practice, but [many] end up not seeking health services at all because they can’t face a situation where they feel their pain is invalidated. They end up not being screened for things and not having their hypertension diagnosed and all sorts of other negative consequences.
“We need to have a non-emotive discussion about how as a community we’re going to respond to that large number of patients – patients with medically-unexplained symptoms can be up to 33% of our patients in primary care. They’re not a small group and they certainly do suffer an enormous amount of illness and disability.”
Associate Professor Stone is the author of a Perspective about disease prestige published by the MJA.
“Disease prestige is the way in which a disease is socially valued,” she told MJA InSight. “Disease prestige doesn’t imply that support is not deserved. It’s just that there’s a hierarchy. There are some diseases that attract a lot of public support and attention, and the public dollar as well, and there are diseases in medicine that we value more highly. If we look at the curriculum of medical schools, we know that some diseases get more attention – cardiology for instance.”
High prestige diseases, she said, were often characterised by commonness.
“That might be because there are more people in the community who’ve had exposure to someone with cancer, for instance. Common things get more support, although that doesn’t always work – emphysema, for instance, is very common but it probably wouldn’t come in under the high prestige label.
“Having someone famous who has had the disease – the Kylie Minogue effect on breast cancer – makes it much more able to be discussed.
“Diseases that you can talk about without shame [are often high prestige]. Diseases shouldn’t be shameful, but people are much less likely to talk about their anal cancer than their brain cancer. It’s much easier to write a public campaign about brain cancer.
“Diseases that make people feel uncomfortable tend to fall down the list as well. It’s interesting what Hazel Hawke did for dementia because dementia was a very low prestige disease, but in the past 10–20 years there has been much more attention.”
High prestige also means more research dollars, she said.
“It gets money, frankly. The publicly funded campaigns, such as the ones from the National Health and Medical Research Council, try very hard to allocate funding according to prevalence and according to burden of disease, but there are always private funds and philanthropic organisations that will lean towards diseases that they believe are important.
“You’ll always get a lean in public funding towards cancers. If you look at most of the research institutes’ websites, they’ll have curing cancer in them fairly [prominent] on their front page because it attracts funding.
“And you can understand why. This isn’t a deliberate thing – we are human, and humans don’t necessarily behave in logical ways. The idea of children dying of cancer is terribly evocative and awful and it’s the reason why we often see children’s cancer spearheading a campaign to raise funds.”
In her Perspective, Associate Professor Stone concluded that: “The lower the disease prestige, the greater the need for doctors to fill the void in validation and support.
“We need to consider issues of justice and equity, not only across populations but also between diseases, and we need to create overt clinical, educational and research priorities that recognise the complexities of funding the breadth of illness that occurs in the community.
“Suffering should not be hierarchical, and care should not be predicated on the prestige that a disease attracts.”
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