Stigmatized and neglected: A pandemic is killing a large number of people with a label 10 to 25 years early!
Stigmatized and neglected: A pandemic is killing a large number of people with a label 10 to 25 years early!
There are millions of individuals with severe mental illness (SMI) dying worldwide 10 to 25 years prematurely. Let us remove the SMI label from the previous sentence, how does it look now? It’s frightening, to say the least.
The first study of its kind to come from Japan tackling the mortality rate status of individuals with SMI was published, in The British Journal of Psychiatry Open (BJPysch Open) by Shinsuke Kondo, an assistant professor of psychiatry at the University of Tokyo Hospital. The results were shocking. Japan, a country leading the world in longevity, still scores high on the mortality rates in individuals with SMI, up to more than 22 years of life lost that is! Dr. Kondo did not appear perplexed by those findings as he expressed in his interview “It does seem surprising that in a country with an aging population and a high-quality national health insurance system, large groups of individuals are still dying prematurely” he continued, “However, if we look at the cause of death, and most importantly, what is behind the recorded cause of death, the numbers make more sense”. In their study, the underlying cause of death was in agreement with the reporting of major international publications, such as cancer and cardiovascular disease (CVD), but Kondo was more interested in the hidden cause behind the recorded ones, data that is almost impossible to obtain at the currently adopted standard.
After all, these comparisons were made between individuals with and without SMI having the same non-psychiatric conditions. Therefore, the real question is, why would an individual with SMI having any of those aforementioned ailments die much earlier than his counterpart in the general population? Kondo, based on more than 20 years of experience in clinical psychiatry, says that the lurking causes might boil down to stigma and neglect.
Individuals with mental illness have to deal with the bundle that comes along the illness itself, be it the symptoms, prejudice, stereotype, discrimination as well as the blame inflicted by society and media. Several unfortunate events occurring around the world such as mass shootings and random homicides are now directly labeled as mental illness acts, and thus the media is reinforcing the stigma towards these individuals. Imagine having to go through the burden of illness, deal with its stigma, and get little to no support all at the same time, this is exactly what these individuals go through on daily basis.
Individuals with SMI suffer from two types of stigmas, public stigma, and self-stigma. Public stigma refers to the attitude and assumptions of others towards individuals with mental health challenges and includes stereotypes, discriminations, and prejudices. On the other hand, the self-stigma is when a person is aware of the stereotypes that describe a particular stigmatized group he or she belongs to, agrees with and internalize those stereotypes, resulting in a negative self-image. No matter which type of stigma someone is suffering from, and many suffer from both, these individuals are affected socially, financially, and most evidently health wise.
Socially, the loss of social circles and social support, as well as the lack of a continuous social network, have major implications on these individual’s overall quality of life. Findings from Goldberg et al., showed that a smaller social network was associated with mental illness diagnosis, and other psychiatric symptoms, while a larger social network was associated with better social skills and cognitive performance as well as superior psychosocial factors such as demographic characteristics, quality of life and self-esteem. The relationship status for example, which was also covered in Kondo et al.’s paper, showed that up to 49% of the individuals with mental illness were never married, others, out of the remaining half, around 58 % were separated or divorced, meaning that relationships were either absent or not sustained.
As mentioned earlier, the majority of individuals with SMI are financially disadvantaged, which means that they have a very low income and thus aren’t able to support themselves. Kondo describes in his paper that 87% of his assessed sample of individuals with SMI were on welfare, disability benefits, or both. No surprise there as it is widely known that Individuals with SMI find it hard to land a job, and thus many of them do end up on welfare. According to the U.S. National Alliance on Mental Illness, up to 80% of these individuals are unemployed. Meaning that they would not be able to afford a healthy lifestyle and/or proper diet.
These two key wellbeing factors, diet, and exercise, which are highly reported to affect this population, in particular, are absent and there are no properly implemented programs to help. Kondo commented on the matter saying that “Commonly, these individuals can only afford cheap meals which are typically unhealthy” in addition when asked about their physical fitness he continued “Individuals with SMI find it hard to fit in when it comes to visiting health centers, to begin with, let alone having no inclusive and accessible centers to make their integration easier”. Of course, physical fitness is important to maintain an overall healthy body, but what can individuals with SMI do when most fitness and health centers are not exactly structured to accommodate them? This is unfortunate as it is well known that such individuals are at high risk for obesity which is in itself a risk factor for diabetes and cardiovascular disease.
Disappointingly, non- psychiatric medical care professionals also carry a stigma toward individuals with SMI. They have assumptions that these patients report non-reliable information about their physical symptoms and thus attribute these symptoms to their mental condition instead, a practice commonly referred to as diagnostic overshadowing. For instance, even though Kondo et al.’s study reported consistent visits of the majority of individuals with SMI to their non-psychiatric physician, that still did not prevent their significant mortality rate compared to individuals in the general population. Of course, This could be due to several contributory factors, but the physician’s behavior is nonetheless an important one. Some physicians even think that these individuals are imagining their symptoms or that they are over reporting them. What they fail to acknowledge however is that the patient’s psychiatric symptoms might interact with or mask their non-psychiatric ones. Since these individuals need special attention when it comes to their treatment, physicians must acknowledge that they can’t treat them the same way they treat their day to day patient. Thus, more coordination is required between the psychiatric and non-psychiatric health providers to provide sufficient and tailored care based on the patient’s needs.
Individuals with SMI are not only stigmatized but also neglected. Neglect is yet another risk factor for their premature death, mostly due to their poor social determinants of health (SDOH), which the CDC defines as “Conditions in the places where people live, learn, work, and play affect a wide range of health risks and outcomes”. The unfortunate conditions that these individuals have to live with, leads to a decline in their overall health, especially with those already having non- psychiatric health problems. Even though some of this is due to their lack of proper self-care, but can they really be blamed for that? Once Individuals with SMI are hospitalized for a long period of time, which is typical for this population, they lose the ability for self-care, and following discharge, they have little or no support from others. Neglect’s toll on the wellbeing and socioeconomic status of these individuals is not minor, and no effective programs are being employed to facilitate their reintegration into society.
When it comes to care and support by others, which every patient needs, another hurdle awaits. The typical support individuals in the general population with such diseases (cancer, CVD, etc.) get from their family and friends, is present less in individuals with SMI. Taking care of an individual with SMI could require extra effort, but it shouldn’t be troublesome. The data from Kondo’s study shows that only 2.2% of individuals with SMI are living under the care of their families, while the rest, 97.8%, are either living independently or in homes. Certain families, spouses and close friends caring for individuals with SMI are already burdened by those individual’s mental illness and have their hands full on that, the non-psychiatric care comes second because it is silent! Thus, the overall care provided by others in the case of individuals with SMI having a non-psychiatric disease is not orchestrated properly and needs more guidance through the help of the parties concerned. Nonetheless, this is not only limited to the household. Since individuals with mental illness seem to “matter less”, they are neglected by different parts of society. Governments hold a big chunk of the liability for not delivering these individual’s basic needs and the media has an even bigger chunk for framing them in images they don’t belong to.
On a larger scale, it might be absurd to think that there are countries that do not include mental illness in their national health legislation, but they do exist and they are not uncommon. For instance, only 36% of low-income countries cover mental illness in their national health insurance plan. These countries form a large percentage of the world population. Interestingly enough, however, even when covered, the problem persists. As we saw from Kondo et al.’s findings, that having health insurance coverage alone does not ensure quality care for individuals with SMI. That makes you wonder about the situation in those countries that don’t even have coverage.
The problem in finding the culprit starts from the recorded cause of death. Typically, the cause of death recorded by physicians, a.k.a. “the underlying cause of death” is the main and direct cause, not the collection of “auxiliary” causes that lead to it, which are equally important. When discussing the cause of death, we should not only mention the underlying cause, which is defined by the Centers for Disease Control and Prevention as “the disease of or injury which initiated the train of morbid events leading directly to death…”, but also the immediate cause and all other intermediate and related conditions. The previously defined underlying cause of death is not always expressive of the real circumstances that lead to death. Recording and having the data for relevant secondary and tertiary contributing factors are essential to further investigate and implement preventive methodologies for such factors. For example, stigma and neglect which are contributory factors are never recorded.
Unfortunately, Japan and several other countries like it with no national health database system recording SMI mortality cases, do not have the data to expose the magnitude of the problem. Such countries could easily hide behind the absence of data and can choose not to tackle the issue to begin with. After all, if the numbers aren’t there, does the problem even exist? Nonetheless, what could possibly be the alibi of countries who do implement such a system? They don’t need one is the answer. Dr. Thornicroft, a professor at King’s College London, labeled it in his editorial about individuals with SMI to BJPsych as “The scandal of premature mortality”, because it is, a scandal. A major reason this is being disregarded and no light is being shed on it is due to the fact that these individuals have mental illness, meaning, they matter less and they can’t be vocal about their own rights. For example, a recent story from Japan about a malnourished woman found frozen to death due to her parents confining her in a small room for about 15 years and feeding her only once a day because they thought she had a form of mental illness is beyond preposterous. What is more unbelievable, reports say, is that her parents got arrested for “illegally disposing of the body”, instead of being arrested for their neglect and abuse.
Additionally, intervention programs to tackle this problem in countries with a database system are still in their infancy, and in other countries with no databases at all are non-existent! This being the first report on the causes of premature death in individuals with SMI in Japan for over 30 years, raises questions on such countries with no implemented database systems. The majority of previous reports on the premature death of individuals with SMI came from nations where large national databases are available. In Japan, up-to-date statistics regarding the causes of deaths of individuals with SMI do not even exist, which is why such reports are imperative and should be highly encouraged. The lack of these statistics by itself signifies neglect of the affected population.
The typical human reaction towards an illness should be compassion and support, not stigmatization and neglect. Globally, the prevalence of Individuals with severe mental illness is on the rise, reaching 560 million sufferers from depression or anxiety disorders alone, so we can’t keep ignoring their basic needs as if they do not exist. Moreover, and of utmost importance, the media should be held accountable for continually portraying individuals with SMI to be hostile and violent by propagating negative, and yet false, information about them. Likewise, they should stop blaming them whenever they run out of ‘other’ minorities to blame. Changing the mindset about individuals with SMI is essential at this point.
Neglecting and stigmatizing these individuals are not the only actions that we should amend, the approach to tackle mental illness should also change. Suicide, for example, is always being endorsed by different outlets as the sole reason for the excess mortality in these individuals. This is simply not true, as these individuals are also dying from different medical conditions as pointed out earlier. However, it is very easy to toss around the suicide tag persistently because it puts the blame on these disadvantaged individuals themselves for their excess mortality and thus no fingers need to be pointed elsewhere. Which is why it is not only greatly misleading to focus solely on suicide, but also threatening the rights of these individuals. Condemning these individuals for their high mortality rate is like sweeping dirt under the rug, the problem won’t just go away!
A plan should unquestionably be devised to countermeasure the situation. Such a plan could be built to increase the quality of life and decrease the years-of-life-lost of individuals with SMI. In addition, programs other than suicide prevention could be constructed and implemented on a nationwide basis for an overall improvement in the lives of these individuals. We expect and demand advancements in all the following areas: medical practice, research, social engagement, and public policy.
