David Zigmond: Payments for diagnosing dementia—what are the hidden costs?

david_zigmond2Payment by results in matters of complex welfare can easily subtract from, rather than add to, our greater good. The recent and mooted NHS initiative for payment by results—to pay GPs £55 for each new dementia diagnosis—matches any folly in our contemporary gallery of well intentioned welfare misconceptions.

This fresh folly draws from these simplistic assumptions: that dementia is an illness that is underdiagnosed and undertreated; that doctors are undermotivated to address these problems; and that financial incentives will substantially change our burdens from dementia.

Such assumptions are easily understood and thus have ready appeal. Their errors, though, are harder to understand, yet more important. This kind of misassumption is now commanding and shaping much of our healthcare. The following single example is offered for definition and exploration, but its significance extends far beyond.

Dementia is both more, and less, than what we normally regard as “illness.” For example, it is rarely curable, or even positively influenced, by standard treatments. We can rarely “beat it,” as the UK health secretary Jeremy Hunt enjoined us recently. And while it is certainly true that our cognitive decline can compromise us like an illness, it also signals our universal fate and evanescence: if we live a long time, we fade. Even if our spirit is sanguine, our bones, skin, hair, muscles, gums, and genitals atrophy. If our brains are spared this polyatrophy, we may be grateful for any fragile oasis of self: increasingly, this becomes a blessing rather than an assurance.

Clearly, if we live long enough, some loss of our executive self will probably be part of life’s involution: our life tide running out. If we call this an “illness,” it is of a very different kind from acute and remediable problems—say pneumonia or appendicitis—where timely and accurate diagnosis almost always leads to complete cure.

Indeed, our cognitive decline needs—mostly—very different approaches to those problems common to much “easier” medical practice. On this more difficult terrain, our engagements fare best when contained and guided by our broader and deeper capacities and perspectives: those of humanism and holism. In practice, how does this translate? Firstly, “diagnosis” must evolve from individual understanding and meaning. Only then can “treatment” mine such understanding, and then fashion bespoke offerings of guided support: those where practical competence is delivered with imagination, attunement, and the possibility of positive attachment.

This is similar to palliative care: while “the treatment of dementia” may be guided by certain universal principles, our offered care must rarely become standardised. For each encounter with each individual is unique: our responses can then evolve to be both delicate and stalwart.

This means that, amid these complex demands, we need to reconfigure our “diagnosis” and “treatment” so that they become more social than medical. And in practice, this kind of experiential question becomes fundamental: “Can we—and those around us—endure our loss of mind, self, and life, in a way that will tend these losses with affectionate competence, and without uncontainable distress?” For if we can manage such things, we may need little in the way of official diagnoses and interventions. Conversely, the use of such devices often signals the absence or decompensation of our social matrix.

So, any “diagnosis” or “treatment” of dementia is rarely straightforward. These difficulties are compounded by, and then increase inexorably alongside, our longevity and social diffusion. Then there is the danger of expedience: that we will clumsily conflate the medical and the social—replacing the pastoral with the manipulative.

There follow very substantial secondary problems. What are these? That at the public level, indiscriminate medicalisation will unleash a massive tranche of new procedural imperatives: often invoking unnecessary and unrewarding blood tests, brain scans, cumbersome prolix assessments, and psychometrics. These comprise part of a cascade of mass produced, formulaic services in a way that is financially and organisationally unsustainable: this easily leads to a broader, overwhelmed collapse.

And at a personal level, that we trespass unwittingly, and unwarranted, governmentally incentivised diagnoses and interventions become rolled out as “policy.” Intelligent discrimination is the only way to avoid such excessive medicalisation.

These conundrae will only increase; for every kind of age related decline is going to become commoner and more problematic, and few of us will remain unaffected. So our caveats—to person based discretion in making our diagnosis and interventions—is probably more important than the sheer number of diagnoses and interventions made. Yet the mooted payment by results scheme runs counter to this principle: it will yield indiscriminate quantity in the place of thoughtful quality.

Doctors generally do not need more carrots or sticks to get them to give their best personal and imaginative care to the incurable. What they need is more head and heart space. These are essential conditions to generate, and then sustain, any kind of personally invested relationships and understandings: those that can best yield therapeutic and palliative effects.

The current financially incentivised plans are heedless of all this. The carrots and sticks will lead rather to more pressurised, and then compliant, bureaucracy: more registers, algorithms, mandatory computer templates, Quality and Outcomes Framework point chasing. These new demands are made of a workforce already bleary eyed, brain numbed, and Mojo depleted from the ever growing plethora of similar devices of “clinical governance.” In a culture of such densely packed procedures, we cannot find space for the individual head and heart. What perishes then are the humane and healing connections that can traverse and link these spaces: those we make with and to one another.

Throughout our welfare services this is the folly of our age. We are so suffused with values from manufacturing industry and corporate commerce that we have often lost our understanding of, and connection with, how best our humanity may more naturally evolve, and how we might protect and nourish it. Yes, of course our welfare must be subject to fiscal prudence and constraints, but these must be clever enough to not destroy the best of our ethos and vocation.

For healthcare authorities this means a risky relinquishing of authority. They must encourage areas of unmanaged and natural evolution so that professionals re-find, refine, and develop their own ideas and capacity for relationships.

To return to the government’s idea: £55 for each GP’s templated diagnosis of dementia. Is this not a commercial transmutation—almost beyond recognition—of how we might best encounter and care for our often tragic fates?

David Zigmond is a GP in London.

Competing interests: I declare that I have read and understood BMJ policy on declaration of interests and I have no relevant interests to declare.

  • It is possible that there are several different pathways through the journey of having dementia, therefore being diagnosed as having dementia should not have a one size fits all stigma.

  • Spring Texan

    Great post, and absolutely right about the horror of this, and the right attitude to take for the best welfare of both health care practitioners and aging patients. Thanks!

  • healthcare cycles

    Very eloquently composed and expressed !