UNREPRESENTED PATIENTS: CONTEXT, RESOURCES, SOLUTIONS
POSSIBLE PREVENTATIVE MEASURES
Legal & Clinical
In order to effectively address the issue of unrepresented patients in the long term, measures must be taken now to lower the chances of at risk adults from becoming unrepresented. Populations that are overrepresented in the current unrepresented patient population and therefore are at high risk for becoming unrepresented include the homeless, those with substance abuse issues, and the mentally ill. In rarer cases, healthy older adults may become unrepresented due to extreme extenuating circumstances.
SO WHAT CAN WE DO?
Since homeless people are much less likely to have healthcare or stay in contact with their physicians, free clinics should try to have resources available, such as abbreviated advance directives or POLST forms, along with designated staff to assist people
These forms should be abbreviated to the extent where they are easy to fill out yet still contain necessary information. They should also be standardized for the sake of physicians. Clinics must ensure that people visiting who are at risk of becoming unrepresented keep these forms on them and should ask said patients to return regularly if possible, as well as inquiring about their social network if applicable.​
Physicians should regularly check in with patients about filling out forms to document wishes and be proactive in ensuring their patients do so and understand the importance of doing so
Physicians should try to understand the social networks (outside of immediate family) of patients with mental illness or substance abuse issues and educate them on the importance of these forms, so they can ensure another layer of proactivity
As mentioned in the first bullet point, creating a more abbreviated 'yes or no' version of forms like advance directives could help people fill them out as many are apprehensive to answer deep questions such as 'What do you value most in your life.'
POLST FORMS
Variable, misconceived
In a recent talk with an expert opinion in palliative care, several issues about POLST forms were brought to my attention including but not limited to: when they are presented, their lack of updates/recency, and misconceptions about terms within the form itself. POLST forms, or Physician Orders for Life Sustaining Treatment forms, are given to patients upon admission to a long term, end of life stay, pre-treatment of course. The form outlines questions such as: would you like CPR performed or are you alright with a DNR order? However, once (and if) a patient fills out one of these forms, they aren't given opportunities to update it. A person's mindset can greatly change from admission through treatment, sometimes to the extent where they lose the initial vitality they may have expressed in their POLST form. This may lead to treatment that doesn't align with a patient's wishes while they are in a life-threatening scenario. In terms of misconceptions, what do you think of when you hear "do not resuscitate/DNR?" Probably an image of a doctor letting grandma choke comes into your mind. However, DNR is vastly different than what many think it is. DNR refers to not attempting to resuscitate a patient who is medically dead: not breathing and without a pulse. In many cases, LST for clinically dead patients results in further injury and prolonged agony. However since this isn't clearly communicated, people may not be able to make a well-informed decision.
FLAWED DOCUMENTATION REGISTRIES:
Issues and solutions
Luckily, the advance directive registry exists. Unfortunately, it's essentially useless in the context of which advance directives are used. Here's an illustrative example of how obsolete the registry is: you get into a bad car accident on a Saturday night, oh no! Fortunately, you have your advance directive card signifying you have a registered advance directive. This is the first place where things could go wrong; many people don't have the foresight to create an advance directive, especially not to register one. But you have a card, let's say. Once you get to the ER, the staff has to write a request to send in. Yes, they have to make a written request for your advance directive. But wait, it's a Saturday night! The registry, since it isn't digitized, is only available from M-F! Now the ER staff are necessarily treating you on an ad hoc basis, as if you didn't even have an advance directive.
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Some solutions that I've talked with a bioethicist about center around consolidation and accessibility. A possible solution could be, similar to an organ donor, placing a dot on one's driver's license to indicate if they're registered in the advance directive registry. In addition to this, digitizing the registry would remove the M-F barrier and the need for written requests. If the driver's license dot were to go through, an emergency responder could use the personalized code on your license to access the registry as well! This solution centralizes the database while also allowing easy access. But again, I'm just a high schooler so don't expect this anytime soon, unfortunately.
CARING FOR UNREPRESENTED PATIENTS: CLINICAL RECOMMENDATIONS
Due to the great legal variability existing surrounding the treatment of unrepresented patients, clinical variability exists largely in three forms: overtreatment, undertreatment, or delay of treatment. All three forms of treatment are 1) detrimental to the quality of life of the patient, 2) cost ineffective, and 3) ethically questionable. Creating standardized policy to replace the ad hoc method of treatment via relatively uninformed physician decision will be greatly beneficial to both physician and patient.
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Solution: interdisciplinary teams (IDTs). IDTs existed under previous California legislation, HSC 1418.8, but were slightly flawed. Generally, IDTs provide varying perspectives and search for consensus in the patient's best interest. Under the original statue, which is now being revised, the IDT didn't require anyone who was non-facility associated, meaning that in a fee-for-service system, conflicts of interest lik
