Being a caregiver is a difficult, often isolating task. As a caregiver, it can be hard to manage the healthcare needs of your loved one while balancing the demands of the rest of your life. It can often feel so overwhelming that it seems downright impossible.
One of the most stressful parts of the caregiving role involves managing your loved one’s health issues caused by a serious illness or injury. You may have to learn new medical terms, make difficult treatment decisions, and manage complicated medication and treatment routines – all while dealing with the stressors of a balancing your job, family and social life with the role of caregiver. But in order to successfully (or best) manage the health care of a loved one, it is essential for you to be fully engaged in the process, but it’s a difficult thing to do. The first step to becoming a good healthcare advocate is better understanding the importance of doing so.
Studies have shown that effective communication between the patient (and caregiver) and doctor leads to more appropriate medical decisions, better adherence to treatment plans and better health outcomes. Conversely, research has found that patients (and caregivers) less involved in their care are more likely to experience a medical error in diagnosis or treatment plans and have poor care coordination.
So knowing all this, how do you manage the health care of your loved one in the best possible way? Of course, knowledge is power and knowing what mistakes are made most often helps us do a better job of avoiding them altogether.
Here are five common mistakes that caregivers often make.
Not Taking Detailed Notes While at the Doctor
Your doctor’s notes may be inaccurate or incomplete, and are often not shared between doctors. It is critical that you take detailed notes, while still with the doctor, at every medical appointment – don’t even wait until you get in the car! A landmark study found that 40-80% of medical information provided by healthcare professionals is forgotten immediately; the more information presented, the lower the proportion remembered. Of the information that was remembered, almost 50% was remembered incorrectly.
Take notes by hand, not on your phone, tablet or laptop. Importantly, research shows that writing (versus typing) helps you remember and understand information. Additionally, writing helps you maintain eye contact with the doctor which can improve the quality of the appointment. Lastly, if you use a tablet or phone, auto-correct may dramatically change important words, leaving you guessing. If you want to keep digital notes, type your handwritten notes at home.
If you are sharing health care responsibilities with other family members, be sure everyone uses the same notebook to take notes, and leaves the notebook with the patient so it is accessible to all.
Relying on your Doctors to Communicate and Coordinate Care
It’s logical to assume that your team of doctors are communicating with each other and coordinating care, but that is frequently not the case. In a recent survey, only half of patients reported they had experienced the benefits of healthcare providers sharing information about their care. Research has also found a major communication gap between PCPs (primary care physicians) and specialists. Nearly 70% of PCPs reported that they sent reports to specialists “always” or “most of the time” while only 35% of specialists said they received PCP reports as often.
Be sure to take detailed notes at every appointment, and bring a copy of all test results and other important paperwork with you to all appointments. You should feel comfortable asking one doctor to speak to other doctors on your team if you think your health or care would benefit.
Not Speaking Up when Something Doesn’t Seem Right
Medical errors are the third leading cause of death in the United States and you can play a part in reducing your risk. As a family caregiver, you are in a position to sense when something doesn’t seem right, whether it be an unfamiliar medication being administered, a catheter line that looks infected or any other concern.
It’s easy to be intimidated by a doctor, who not only has a specialized education and years of experience, but who may rush you along due to time constraints. However, it is of critical importance that you speak up if something doesn’t seem right. Your loved one’s life may depend on it.
Not Following Medication Instructions Exactly
Did you know that over 50% of Americans don’t take their medications as prescribed? Being non-compliant with medication regimens, such as skipping or delaying doses, or taking the wrong dosage, leads to thousands of adverse health events or deaths every month in the U.S.
When your loved one is prescribed new medications, be sure you understand when, how and why he/she should take them, including potential side effects. For instance, should the prescribed “three times per day” medication be taken three times per day at standard meal times or literally every 8 hours? Taken with or without food? What should you do if you miss a pill?
It is also crucial that you check to be sure you have been given the correct medication by the pharmacist. Studies show that up to 20% of prescriptions are filled with errors, deviating from the doctor’s orders. Before you pay at the pharmacy, check the name, dosage and instruction on the prescription label to make sure it matches what your doctor told you (right down these facts when getting a new medication). If you are given a medicine that does not look familiar, speak to the pharmacist.
Medication errors happen at hospitals as well. It has been estimated that there is at least one medication error per patient per day in U.S. hospitals and long-term care facilities, with an estimated 1.5 million preventable adverse drug events every year. If your hospitalized loved one is given a medication that doesn’t look familiar, speak up!
Failing to Follow Up on Test Results
It’s easy to assume that if a test shows that something is wrong, the doctor will call you. However, you can’t rely on the “no news is good news” approach. A survey of doctors found that almost a third of doctors reported they had missed “alerts” for test results that had led to delays in patient care.
When you have any kind of testing performed, ask the doctor or testing staff when the results will be available. Mark your calendar and call your doctor if you haven’t been notified regarding the results.
Knowing better, doing better
None of this is easy, especially when you’re also managing the pressures of your own life and day-to-day responsibilities. You’re going to make mistakes; it’s only human. But we know that better communications between physicians and patients and families leads to better medical decisions and better health outcomes. If simple steps like taking good notes during an appointment and speaking up when something doesn’t feel right can positively impact your loved one’s health aren’t they steps worth taking? You’ll likely find that doing so greatly reduces your own stress too.
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Roberta Carson, Founder and President, Zaggo, Inc.
Roberta founded Zaggo, Inc. in 2010 to help patients and caregivers effectively manage their own illnesses and injuries after caring for her son Zachary during his 27 month battle with terminal brain cancer. Roberta created the ZaggoCare System to provide patients and families with the information and tools they need to be engaged, empowered members of their medical teams.
100% of the profits from Zaggo are donated to the Zachary Carson Brain Tumor Fund to support pediatric brain tumor research.