The fundamentals of healthcare itself are similar in most developed countries. Evidence based guidelines are shared by international professional societies. Digital technologies have transcended cultural and geographical divides. Once someone is brought to the attention of a healthcare provider, it is the start of a rocky road, not all downhill by any means. Navigating the healthcare landscape as a patient and caregiver has never been more difficult, even for an ‘insider’ like me. I have recently experienced many while acting as an advocate for my mother. What I would like to do is to highlight a few areas which represent potential pitfalls of care though they do not involve the provider directly. Many physicians are unaware of the mountains to climb and ravines fallen into that patients are presented with in getting to the clinic, getting questions answered before and during a workup or after a diagnosis, and the potential inconveniences and danger these barriers represent…until they become patients or caregivers themselves.
1. Insurance Coverage Issues/Cost Sensitivity. While this pertains to patients in the USA, I’m sure that there are analogies in other countries. Patients may be prescribed a new medication by providers (a) without maximizing their tolerated dose of one before it is called ineffective, (b) to a newer, more costly drug (without comparative efficacy studies as a ‘me too’ drug) because of marketing, or (c) because it is being prescribed for an unrecognized side effect of an unrelated drug (avoided by researching the symptom). Many patients are unaware of the ‘Medicare Part D ‘donut hole.’ The aforementioned scenarios can result in substantial financial responsibility of the patient if they fall into this situation. Nuances of all individual patient coverage is beyond what can be expected of a physician, however patients and caregivers should be aware of how their insurance covers such things as medication costs, inter-institutional transportation costs, and out of network provider costs.
2. Appointment Scheduling. Hospitals cannot operate on a five day/week schedule. It is neither practical nor efficient. Some hospitals do not accept transfers from other facilities on weekends. Patients cannot be expected to make a diagnosis before seeing a provider. If they feel something is highly unusual either by severity or duration of symptoms, an appointment weeks or months away should not be accepted because of an assumption that the provider ‘knows best.’ It is not uncommon for a patient seen as a hospital inpatient for a problem to be discharged and subsequently told that an office appointment is considered a ‘new patient visit’ and the availability for such a visit is weeks or even months away. Office staff receive their ‘marching orders’ and are intransigent with regards to bending the rules even for urgent issues for which a request to speak with the physician (otherwise known as The Wizard of Oz) is met with a brick wall. There are technologies to schedule visits via mobile apps now (ZocDoc, Doctoralia) however they are either paid models or specific to healthcare systems.
3. Transitional Care. The process of being discharged from the hospital (either to a non-acute facility or home) is a hurried, stressful, and confusing one. Written instructions are now mandated. However, they are often hard to read carbon copies and too general to have meaning for the average patient. They are reviewed in a rapid manner because of time constraints of nurses who now spend less than 20% of their time in direct patient care according to one study. . Patients are stressed and don’t know the right questions to ask. Follow-up appointments are not made and are difficult to prioritize or make by the patient; “Who do I see for what? Who first?”
4. Communication. This is perhaps the most important of all, because it can be applied to many issues in patient advocacy. My mother was a patient in a well-known academic institution. She was under the care of four specialists. Each physician had a team consisting of an intern, resident, training fellow and nurse practitioner. My mother had no idea who any of these 20 odd number people a day who saw her either because they didn’t introduce themselves. If she asked who they were, she was told but understandingly could not remember. She tried to keep a lineup card as I instructed her to, but was unsuccessful. What if there a hospital ID tag with an RFID containing the person’s name, position, and department (nothing secretive about that)? Mom could have used the QS Reader app she has on her smartphone to keep tabs. Perhaps one could develop an app for this purpose which would produce a running log of all hospital personnel entering a room. This could be used for infection control, risk management, as well as patient advocacy.
The business of healthcare is complex. Hospitals and individual providers signed up and have mission statements professing dedication to good patient care. However, given personnel and time resources, navigation of the system has proven to be more important than the care itself. This is true because it directly affects access to care, may result in prohibitive costs to the patient, and places regulations and process as a higher priority than the patient. While this post represents just some thoughts based on recent personal events, I would recommend two stellar patient advocacy books which are devoted to navigating the healthcare system: “The Take-Charge Patient” and “We’re in This Together”.