A Current Snapshot of Mental Health in the United States 

Persons with diagnosed severe mental illnesses (SMIs) make up approximately 5% of the United States population. These illnesses, diagnosed or not, impact the person mentally, physically, and psychosocially. Severe mental illnesses include, but are not limited to, schizophrenia, bipolar disorder, major depression, and substance abuse disorder (Donald & Stajhudar, 2019). 

Persons with severe mental illnesses experience higher rates of physical comorbidities, including diabetes, hypertension, and dyslipidemia (Zolezzi et al., 2017). Furthermore, persons with SMIs often engage in a higher rate of risky behaviors as a result of their illness, such as smoking and following a poor diet, which contribute further to physical disease (Fiorillo and Sartorius, 2021). These increased physical comorbidities also speak to the increasing death gap between the severely mentally ill population and general population. Persons with SMIs are likely to die 10 to 20 years sooner than their non-SMI counterparts (de Mooij et al., 2019). 

Mentally, symptoms of SMIs are often extremely burdensome to patients. The nature of the disease means there can often be difficult psychiatric symptoms such as delusions, paranoia, anxiety, and depression. These symptoms can have a significant impact on the quality of life of persons with SMIs, and can be just as burdensome as physical symptoms (Barnes et al., 2012). 

Beyond physical and mental implications, the presence of an SMI can greatly impact the social well-being of persons with SMIs. The SMI population often lives socially excluded from society (Richter and Hoffmann, 2019). Persons with SMIs are often othered and lose connections with family and friends following a diagnosis. This can be due to different types of stigmas and low tolerance for symptoms of the disease. Chosen family, a term first used in the LGBTQIA2S+ community to describe families outside of legal or blood bonds (Levin et al., 2020), becomes crucial for practitioners to understand and incorporate into care. 

Stigmatization is rampant in the United States and can occur in multiple venues, including the self, society at large, and health care settings. Self-stigma is internal stigmatization or negative feelings or emotions about one’s diagnosis or self (APA, 2020). For example, people with an SMI who do not have violent tendencies may believe themselves to be dangerous due to their SMI diagnosis. Health care stigma occurs when health care institutions intentionally or unintentionally uphold stereotypes, leading to missed care for vulnerable populations (APA, 2020). The impact of stigma on a person’s well-being should not be underestimated. Stigmatization of the SMI population is a significant barrier and thought to be a significant factor in the 40% of persons who do not seek psychiatric treatment when experiencing psychiatric symptoms. Fortunately, death doulas work outside (or adjuvant to) the historically isolating medical model and healthcare system. 

The end-of-life period, unfortunately, is not immune to the presence of stigmatization of this population, and it is arguably much worse. It has been shown that persons with SMIs are 2 to 4 times less likely than people without SMIs to have access to palliative care at the end of life (Chochinov et al., 2012). Backing this, researchers have found that persons with SMIs were 2.5 less likely to even receive a referral to palliative care services than the non-SMI population (Butler and O’Brien, 2018).

Furthermore, the literature has advised practitioners to consider end-of-life needs the same as those of the non-SMI population (Woods et al., 2008). Understanding that persons with SMIs experience life so differently, why should we assume their needs are the same in death? At this time, there is not clear evidence in the literature delineating needs specific to this population in the EOL period.