THE UNREPRESENTED

Unaddressed, stigmatized, alone. (Work in progress! Will continue to be updated as I learn more myself and find more resources. Due to formatting issues, this is better viewed on desktop/laptop).

Who are unrepresented patients? Here's a brief working definition: unrepresented patients, also sometimes referred to as unbefriended, are generally elderly people who lack both medical and/or financial decision making capacity, as well as traditional surrogates to make decisions and advocate for them. Many of unrepresented patients also suffer from diseases such as dementia, making the assessment of their decision making capacity, which is in flux for many even healthy older adults, difficult. Due to a lack of standardized care or existing protocols in many areas, unrepresented patients may receive care which conflicts with their beliefs or unexpressed wishes, at the expense of physicians who lack a holistic view of the patient. Additionally, unrepresented patients make up 4% of long term ICU patients (this means around 5-10 thousand in California alone), although higher estimates have been made (unsurprisingly, there is not much existing data on unrepresented patients). This issue is becoming increasingly relevant with the baby boomer generation aging, as they have higher rates of childlessness and divorce than other generations, which is leading to a current uptick in (soon to be) unrepresented adults. Clearly, this is an issue, the address of which is long overdue.