Our Patient Support System

For years we have been training people to be better patients. We've focused on preparing them for the moment they enter the healthcare system — from an annual wellness visit to advanced medical treatment and everything in between. For patients, best practices state they list and describe symptoms answering the what, where, when, and how often of their health concerns; that they bring information about any current prescriptions, over-the-counter drugs, vitamins, or supplements they may be taking.

Perhaps more importantly, we ask them to bring a friend or family member as an advocate with them, someone that can speak for the patient and help them better understand the care they need.

We've also asked patients to be active in helping their providers develop a personalized care plan by asking questions and by listening and learning. As part and parcel, we encourage the patient's healthcare advocate to partake in this process to focus more on recovery. And lastly, we urge not only patients to complete their follow up; we ask that their advocates encourage and support the completion of the treatment plan.

Do you notice a common theme? Patients and the healthcare system alike rely on healthcare advocates. Whether a family member, friend, trusted coworker or a hired professional ask questions, these individuals write down information and speak up for a patient. 

An advocate helps the patient to understand an illness, treatment options, and lifestyle changes. They do this to get the care and resources needed to reach the best quality of life. Advocates play a vital role in ensuring that the patient's wants, needs, and preferences are taken into account when making a healthcare decision. They also communicate outside factors that may be impeding a patient from gaining or maintaining health.

Essentially, advocates enforce checks and balances within the system.

Despite the significant role of the healthcare advocate, we have seen increased restrictions on moving freely within healthcare and hospital systems for more than a year. We've seen policies limiting advocates, be it, family or friends, from visiting patients unless medically necessary. 

We've even seen end-of-life and labor and delivery patients left to fend for themselves in the name of safety. Removing these family members from patient care has resulted in declining quality of care. By their very circumstance, patients are at their most vulnerable, sometimes very sick, many times in crisis mode, and most of them need someone there to help them. They cannot process the diagnosis and treatment options simultaneously.

Whether it's to communicate with their care team, insurer, or pharmacist or help schedule screenings, follow-up care, and other appointments, removing this support system from within a patient's reach can take away their ability to navigate the healthcare system successfully. 

In tandem with this removal of a patient's best defense, their family, and advocates, hospital systems have been in states of nothing short of chaos over the past year-plus. Although things seem to be getting better, we've all seen the photos of exhausted healthcare professionals at the end of their shifts. The environment within some hospital wings has been that of a constant crisis, one in which shifts are stretched to the limit, protocols on care are sometimes evolving by the hour, and patient loads exceed staffing levels. If one can't find their way within such a vortex, the quality of patient care has nowhere to go but down. Indeed, from a particular perspective, it begs the question: Did the pandemic give providers and their operations permission to provide worse care? 

I certainly hope not.

In a system that was already challenged and fragmented and now subject to new levels of stress due to the pandemic, the removal of our patient-support system, the removal of our advocates leaves us in the dark on who is receiving too much or too little care and who is receiving the right care at the right time. 

My concern is for those patients who either can't speak up on their own or don't know what to say. Our friends, families, and advocates serve as a check to balance power within the healthcare system. Without them, I can only hope that our care teams will take a closer look at the patients alone in their care. I hope that when considering the course of treatment, especially for those patients who now find themselves alone, consider not only the problem but the whole person. And consider reaching out to a member of their family, a friend, or an advocate for good measure.  

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