Abstract
See Commentary by Trauer, 2012, 46(2): 170–172; See also Review by Berk et al., 2012, 46(2): 92–99
While Trauer (2012) endeavours to adopt a critical position in relation to our proposal for a palliative model of care, on our reading of his commentary we find, surprisingly, many points of agreement. This is partly because of his misunderstanding of our acknowledgement of the need to address the needs of a subgroup of people with well-established treatment resistance that we have identified within stage 4 of the staging paradigm. The clinical staging model is heuristic and defines stages of illness by the degree of ‘extension’ of the illness and its impacts. Indeed, the putative stages are not fundamentally defined by treatment response, but rather by the recurrence, persistence, severity and extension of the clinical features and their impacts. Ultimately, it is hoped that biomarkers can reshape and validate the boundaries of these stages across the current diagnostic spectrum. In the meantime, evaluation of the impact of intervention strategies is the most immediate practical focus for the staging idea. While a tendency (only) for untreated illness to progress is an assumption, the staging model not only acknowledges, but depends upon, the fact that progression is not inevitable, and that enduring or permanent remissions and recoveries are a prominent feature and can occur at any stage. Such resolutions are much more common in the early stages but even in established schizophrenia late remissions can occur in up to 16% of cases. Therefore, the use of the term ‘palliation’ in psychiatry, if, indeed, it is a wise term to employ, must be judicious, strategic and accommodate reversibility.
As staging is not actually tied to treatment response, it is obvious that it is possible to attain a late stage of illness (such as stage 4) in a number of ways. Firstly, this may occur via the treatment resistance route when a patient fails to improve and deteriorates to a persistently symptomatic and disabled state, despite genuine exposure to all evidence-based treatments currently available. Secondly, as Trauer correctly points out, patients can also reach stage 4 because they have not been exposed to the full range and sequence of evidence-based treatments. This is a result of the failures and under-resourcing of our mental health system. Most notably in schizophrenia, this involves failure of access to evidence-based therapies, including vocational rehabilitation, psychoeducation, clozapine and cognitive behavioural therapy (CBT). No group of patients should be subject to pessimism or neglect. The first group should be identified, as we have proposed, in order to cease ineffective and potentially harmful interventions and continue to encourage meaningful activities and goal-setting despite the risk and reality of syndromal recurrence. Creative, yet rigorous, research into ways of improving quality of life for those with such recalcitrant illness patterns is needed. Such patients typically attract, as Trauer highlights, bewildering levels of polypharmacy, which do little good, yet increase the risk of physical illness, as well as reduce quality of life in other ways. Yet, optimism should be maintained as personal and subjective recovery pathways remain possible, as does late remission or improvement for many. The last group should obviously be offered belated access to the interventions that they have not yet been exposed to. Unfortunately, owing to the mere fact of late intervention, the prospects of response are inevitably reduced somewhat for these patients.
In formulating this article we did seriously question the wisdom of the use of the term ‘palliative’ as, despite its strict definition, its connotations are pessimistic and oriented to an inevitability poor (mortal) outcome. We are not sure whether the concept can be rehabilitated or another one should be selected. Expectations are critical in mental health care and the equation of palliative with ‘incurable’, as Trauer rightly points out, would be destructive. Nevertheless, as we can freely acknowledge, current treatments are far from perfect and the specific needs of the subgroup of people whose severe course of illness has not responded to even established evidence-based treatments should be identified and treatment tailored to enhance their quality of life.
The idea of palliation does not necessarily run counter to the hugely important recovery paradigm which emphasises strengths and positive quality of life. Nor does it imply that people stop treatment. Full recovery may involve complete and long-term remission of symptoms for some, even without medication (Goldberg and Harrow, 2011). For others it may be a way of life—a way to live well within the limitations of the illness (Henderson, 2010). Recovery has been interpreted as developing connectedness to others, a positive identity, and engaging in personally meaningful activities while using illness-management strategies to reduce symptoms as much as possible (Henderson 2010; Leamy et al., 2011). The recovery process may be more challenging when the person is faced with severe treatment-resistant illness and clinicians may have an even greater role in supporting and empowering the person to live well with their illness. The concept of ‘wood-shedding’, developed by John Strauss (1989), places a positive and temporary connotation on reduced functional capacity and is the type of positive language we need to reframe periods of struggle and apparent stasis. We agree that there is a need to simultaneously maintain hope and optimism about more long-term syndromal remission and functional recovery—knowing that many patients who struggle at one point in time have the capacity to show marked improvements over time—while at the same time utilise approaches that are tailored to the person’s unique profile and history. The clinical staging model seeks to balance the benefits of treatment versus the risks; the intent of this article has been to highlight the risks of overtreatment later in the course of illness, especially when interventions have been tried and failed, and to suggest the development of new approaches that may support ongoing ‘recovery’ and improved quality of life (e.g. evaluation of Acceptance and Commitment therapy).
Finally, we must robustly refute Trauer’s inference that we imply that the care of people with severe and enduring mental illness is wasteful. There is quite obviously neglect at every stage in the care of the mentally ill. The access, coverage and quality of care for people with serious mental illness is way below that on offer for physical illness and what Australians should expect, so waste is not at all the issue. The cake must get bigger across all stages and, indeed, that is what occurred in the recent federal mental health reform budget in 2011. While, for the first time, we saw moderate investment (around $400m over 5 years) to provide better access to care closer to the onset of mental illnesses and to begin to build age- and stage-appropriate services, the largest single investment ($571m) was still devoted to people with serious mental illness. Currently, this is where the vast bulk of the national investment is already spent; hence, as well as growing the cake, we need to develop more efficient and better integrated models of care for people with more established illness. National Mental Health Survey data have revealed that the most dramatic gap between need and access to care remains in the early stages of potentially serious mental illness, not only in the psychoses; hence, the positive emergence of bipartisan support for new investment here. Mental health care has differed from physical health care in seeing early diagnosis and treatment as competing with the care of chronic illness. This is a false dichotomy, as both are essential. We must move past this obstacle as we have a lot of catching up to do. Health economic data now clearly indicate (McCrone et al., 2010) that investing in the early stages of illness in young people is cost-effective and not, as Trauer asserts, wasteful and only spent on people who ‘would get better anyway’. We have never advocated a transfer of resources from late to early intervention, nor is this what is occurring under national mental health reforms, where new resources for both stages are being allocated. Of course, what is needed is more investment and greater efficiency and integration of care for all patients with all disorders at all stages. A fair deal for the most severely ill and marginalised patients and their families is required, but equally for the next generation so that they can lead happier, healthier and more fulfilling lives than has been the lot of the previous generations of people with mental ill health and mental illness.