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How to be a Patient Advocate for Your Loved One

Imagine yourself in a situation where a family member or loved one has fallen critically ill and is looking at a prolonged hospitalization. The outcome is uncertain. The doctors may not even have a definitive diagnosis. It feels like nothing is happening while your loved one lays there suffering and in fear of his or her life. This exact situation recently happened in my family when father fell ill and it is bound to happen to most of us at some point in our lives. When that time comes, your sick loved one needs someone to be their patient advocate. If this heavy responsibility happens to fall on you there are some relatively easy things you can do to help.

A patient advocate is simply someone who monitors the medical care being rendered to a patient to ensure that they are receiving the best possible care. They assist the healthcare team in understanding the patient’s history. They assist the patient and the patient’s family in understanding the specific circumstances facing them and what the plan of care is going forward. So critical is this role, in fact, that it has even spawned a cottage industry where patient advocates are available for hire. Financial resources do not have to be devoted to this role, however, if you follow a few basics. These guidelines will help your loved one get the care they deserve and they will help perpetuate a more peaceful environment that allows for healthier healing.

1. Learn The Medical History and Know When to Share It

Critically ill patients most often arrive at the hospital through the ED. The ED staff has the unenviable task of attempting to decipher a story that is often being told from several angles and that can include renditions from the critically ill person to the hysterical daughter to the crying spouse. From this, the ER doctor has to determine what tests to run in order to begin to assemble a differential diagnosis. Only then can they begin the challenging process of ruling out the most serious conditions first. After the tests are complete, consultations will occur with doctors of many different disciplines. Each time, the consulting doctor will take a history. The same story will have to be repeated. This will happen over and over again. It annoys the patient and the family and it causes stress because it makes them feel like they are forever spinning their wheels with no answers forthcoming. This is where you come in.

Be patient. Pay attention to the story and the patient history from the outset. The history will evolve throughout the hospitalization as your patient moves from floor to floor, reacts differently to certain interventions and develops new symptoms while also shedding old symptoms. Stay on top of it. Expect the repetitive request for a history and calmly assist the patient in providing the history. Be mindful that the physicians will often want to first hear from the patient to see what they are capable of recalling and communicating. Know when to gently insert yourself in order to correct errors or provide additional information that the patient is omitting. Be a calming presence to the patient and the medical team so everyone works the problem together in a measured manner. Don’t be overbearing and talk over the patient or the doctor. Simply make sure the professionals have what you believe to be the critical information. It’s a stressful time and it can be challenging, but try to be calm and try to be nice, particularly if the doctor’s bedside manner is less than ideal. Everyone will benefit from it in the end.

2. Know the Treatments and Medications

Critically ill patients sometimes move from facility to facility, then back to former facilities and so on and so forth. In the process they may go through healthcare facilities that are not affiliated with one another and do not share medical records. There is a push nationally to centralize medical records but this has not yet happened. Your patient needs their medicines and they are often not permitted to bring them from home or from one facility to another. The medications also change frequently. A receiving facility may ask what medications the patient is taking. This can be 20 different medications of different doses, none of which are physically with them upon transfer. Know the medications. You must. Go to the records department and get the printout if need be or get a printout from the nurse’s stations. Make sure it includes frequency and dosages. You never know when you might find yourself in the situation where the healthcare professional asks what medications the patient is on. Faced with this situation, you might say, “It’s in the computer,” or “It’s in the records.” What will you do when you hear, “I don’t have access to those records from this system.” Be prepared.

3. Make Sure you Understand the Patient’s Working Diagnosis

The most common complaints we hear from people are that the doctor was short, ill-tempered, and rarely available to answer questions. If you encounter one of these doctors you simply have to deal with it. But don’t let the doctor’s attitude prevent you from getting the answers you and your loved one deserves. You’ve done your part to know your patient’s history and medications in order to assist the healthcare providers, now it’s their turn to tell you what’s going on. You deserve to know the real names of the issues your patient is dealing with. Don’t settle for, “It’s an infection.” What kind of infection? Where is it? What are the potential complications? How is it being treated? Is it antibiotic resistant? What do you know at this point, and what are the unknowns? Don’t settle for, “It’s lung cancer.” Ok, what stage? Has it metastasized? Is the metastasis regional or distant? What specific form of cancer cell has been identified?

You are entitled to answers to all of these questions. Answers to these questions will arm you with the information you need conduct any research you desire. As any doctor will tell you, be wary of internet research as it is often misleading or outright inaccurate. Most often doctors will gladly share with you websites you can go to that they believe will give you reasonably accurate information so you can get your arms around the diagnosis and then share it with the patient and the patient’s family. Keep asking questions. You can make yourself pretty knowledgeable about the narrow medical issue your loved one is facing, even without a medical degree.

Few people take the time to contemplate the challenging consequences of a loved one falling critically ill and what it will mean for the family. By taking a few minutes to think about how to handle these adversities now, you will dramatically improve the chances of averting foreseeable problems that serve to make an already difficult situation far worse.