What should society reasonably expect from mental health care? How can we identify undertreatment and overtreatment? Moreover, can psychiatry learn something from palliative care? These are some of the topics that might be worth discussing in the coming years.
I believe that mental health care is one of the most important parts of our healthcare system. Still, society sometimes seems to treat psychiatry unfairly. What should we do about that?
Some of the highest degrees of suffering in human beings seem to come from psychiatric conditions. Affective disorders may affect the whole subjective outlook of your living world. A psychosis may challenge your connection with reality and distort your experience of truth. In addition, the malady may directly affect the identity and social relationships of the person in question. Usually, the more severe the disease, the more important it is to respect the autonomy in question. However, psychiatric disease sometimes seems to put us in a paradox in which severe conditions may directly affect the ability to make good autonomous decisions.
Throughout many years, I have been frustrated by societal negative talk about mental health care. For somatic medicine, lay people and society seem to accept that disease may be chronic, recurrent, untreatable, and even deadly. A similar societal acceptance does not seem to be the case for psychiatry. Is this reasonable? Perhaps the crisis in psychiatry is also a crisis in the societal expectations of mental health care? (1)
In ethics, a central dogma is “ought implies can." This means that we only ought to do something if we can do something about it. For medicine, this means that we can only reasonably expect interventions that are possible. We can never reasonably expect the impossible. The question is, then, what society reasonably should expect from mental health care.
A constructive way forward may be to talk more about the expectation gap in psychiatry, that is, the gap between the available resources and society's expectations. Independently of one's political and academic perspectives, it seems reasonable to seek to lower the expectation gap from different angles. While some prefer to focus on gaining a higher degree of resources, others on medicalization, others on adjusting societal expectations, and others on priority setting of scarce resources, these perspectives may join forces in lowering the expectation gap (2). In fact, such approaches are complementary.
Palliative psychiatry
In moving forward in the debate about the right kind of expectations in psychiatric work, I became aware of a small debate on a concept called palliative psychiatry in academic journals. This discourse has been ongoing in the last 20 years in the UK and the US, partly also in Sweden. In principle, palliative psychiatry can refer to palliative care of people with terminal somatic disease and concurrent psychiatric illness, or it can mean palliative care of the psychiatric conditions itself. Much of the energy in the palliative psychiatry debate has gone into defining palliative psychiatry. There is much concern about reducing overactivity in psychiatric treatment, as well as critical attitudes towards zero visions. There is also a search for good symptomatical treatment when curative measures are lacking (3–6).
Five dimensions
A central starting point of palliative care comes from Cicely Saunders, who stated that there is always something more we can do. Palliative psychiatry seems to have at least five dimensions: more humanism, regulation of expectations, a change in the level of treatment, identification of medical futility and overtreatment, and, most controversially, discussion of ending life-prolonging treatment in extreme cases.
First, in somatic medicine, where the palliative perspective comes into place, the patient's perspective is broadened to include total pain. While there are many perspectives on suffering, palliative psychiatry might broaden the perspective to include the patient's suffering. We might also extend this perspective to concerns of epistemic justice. The palliative perspective opens up the possibility of broadening the goals of treatment and care and challenging the dichotomy between normality and disease. We aim to treat whole persons. We also aim to respect the autonomy of those persons. However, it might be tempting to practise a dichotomized approach between normality and disease in which we have a healthy, authentic person with free will on the one hand and a deterministic, diseased, inauthentic part on the other hand. As people are affected by severe psychiatric diseases, it might be challenging to respect their autonomy. However, from the perspective of epistemic justice, we should challenge ourselves, and perhaps to a greater degree respect the autonomy of persons even if they are affected by severe mental disease.
A second dimension of palliative psychiatry might relate to adjusting expectations. The palliative discourse has built into itself the notion that conditions might be chronic, untreatable, and even deadly, which sometimes also concerns psychiatric conditions. This perspective of palliative psychiatry might invite adjustment of society's expectations of mental health care.
A third dimension concerns changes in treatment goals in psychiatric medicine. Of course, the difference between curative and symptomatic treatment might be less apparent in psychiatric medicine than somatic medicine. Still, even if we give up hope for creative treatment, in Saunders's words, there is always something more we can do.
A fourth dimension of palliative psychiatry concerns shedding light on what constitutes overtreatment and futility. The concept of futility is more well-developed in somatic medicine than psychiatric medicine. Any search for futility and overtreatment will also challenge our views on the intensity of care and treatment goals.
The fifth and most radical dimension of palliative psychiatry would be that of ending life-prolonging treatment. This is a well-established practice within somatic medicine, which relates to choosing not to start or to stop life-prolonging treatment. Examples in somatic medicine can include choosing not to conduct CPR when cardiac arrest occurs or choosing not to give intravenous antibiotics to a patient with severe pneumonia. A central question is whether we should allow for a similar discussion in life-prolonging psychiatric treatment. This might involve, in extreme cases, ending recurrent compulsion for a suicidal patient or ending forced feeding of an anorectic patient (7). This fifth dimension is a debate that should if ever discussed, be conducted within the professional environment of psychiatry itself.
Palliative psychiatry seems to have at least five dimensions: more humanism, regulation of expectations, a change in the level of treatment, identification of medical futility and overtreatment, and, most controversially, discussion of ending life-prolonging treatment in extreme cases.
Pro et contra
Considering all the possible dimensions of palliative psychiatry, several potential arguments exist against a debate in palliative psychiatry in the Nordic countries. In the interest of time, I will summarize them shortly here. One concern is simply that the concept of palliative psychiatry captures too much within the same term. This, of course, can be solved by rebranding and discussing different dimensions separately. Another concern relates to whether a palliative psychiatry perspective might lower the ambitions of mental health care too much, as well as to take away hope from the patients. There is also a risk of self-fulfilling prophecy. Other concerns might relate to whether a palliative psychiatry perspective might have unintended societal effects.
On the positive side, a perspective of palliative psychiatry might invite to a more conciliatory debate about what mental health care is and what it should be. Palliative psychiatry might be an antidote to zero visions and reduce the need for coercion. Such a debate might also contribute to novel thinking, including a larger toolbox for treatment, a broader concept of suffering, and adjustments to societal expectations of mental health care. In addition, it might indirectly invite further discussion about overactivity and underactivity, as well as priority setting of scarce resources in mental health care.
Palliative psychiatry in the Nordic countries is still in an explorative phase. Thus, there might be several blind zones in this approach. For instance, generally, there seems to be a greater epistemic uncertainty about the outcome of psychiatric diseases as opposed to somatic. Such uncertainty might call for carefulness about a palliative psychiatry approach. Moreover, and perhaps related, while society seems to accept that many somatic diseases are deterministic (and thus outside our own control), we also seem to assume that we have at least some slight degrees of agency (i.e., free will) within psychiatric diseases. In addition, the fact that many psychiatric diseases are so severe might cause us to rightfully think that we should have high ambitions (perhaps higher than in somatic medicine), on behalf of mental health care.
Conclusion
It is not a given that we should introduce a full debate about palliative psychiatry in the professional environment in the Nordic countries. Still, it seems that seeing psychiatric treatment through the lens of palliative care may sometimes help gain new perspectives on mental health care. Hopefully, the palliative perspective might highlight some of the positive sides of mental health care and rightfully adjust societies’ expectations. In this way, we might get a clearer picture of how psychiatry should move forward in the future, as well as discuss and seek the right level of ambitions for psychiatry.
Acknowledgements
I would like to thank Håkon Kjelland-Mørdre, Anders Malkomsen and Nir Eyal for earlier discussions on this topic, as well as Anne Kristine Bergem for comments on this article. □
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