Everyone Needs an Advocate

Suddenly you find yourself in the back of an ambulance being attended to by paramedics as you are rushed to the nearest hospital. Your mind is filled with a million thoughts yet none of them seem to come together. A multitude of emotions run through your head. Fear, dread, shock, pain, and perhaps impending death. Wheeled into the emergency room a hundred questions from an endless stream of people are thrown at you but it’s hard to make sense of it all. Help!

Clearly this is an extreme case, though one never knows when something similar might happen. The longer we live the more likely it is we will all need medical care. Some more than others. Are you savvy enough to navigate this complex world? OR, do you have a person in your life who can advocate for you? Someone in your family? An awfully close friend who knows your health history well enough to answer decisions you cannot? Will you need someone at your side who knows your wishes and will keep your best interests at the forefront? 

Everyone needs an advocate.

I have been a type 1 diabetic since I was 8 years old. I have battled endless complications that come with the disease as well as those one faces when taking an exorbitant number of medications that accompany severe, chronic illness. Multiple hospitalizations over the years including numerous eye surgeries due to retinopathy that left me blind for almost 4 years. A kidney transplant at age 27. Multiple heart attacks with stent placement. Years of cellulitis and osteomyelitis resulting in a below the knee amputation. Ruptured appendix. Skin and prostate cancer. Multiple bouts with pneumonia. Covid 19. And so much more. While I have managed to survive them all it was not without the help of a knowledgeable advocate.

Fortunately for me, I met and married a registered nurse who had years of experience in Emergency Rooms, Intensive Care Units and managing a team of nurses for many years. In today’s world hospitals are not the same place they were in years past. No longer does your own physician, who may have known your health history over many years, come to our room daily to make rounds. Instead, we are attended to by a hospitalist(s). This physician is there to manage you through your stay while trying to learn the nuances of your health over the last several decades with a brief look through prior records. If you go to a teaching institution you can multiply the hospitalist by untold numbers of interns, residents, students, and fellows. Sound confusing? Damn straight it is.

Try as they might, doctors don’t always follow through on all the things they say they will. They are busy. Someone needs to be taking notes, monitoring what is being done and reminding the doctors or nurses when tests or procedures that were promised don’t happen. This can be a full-time job depending upon the situation.

You may get conflicting opinions from a cardiologist, nephrologist, neurologist, endocrinologist, hematologist, or oncologist. Who is there to make sure the right questions are asked and answered before arbitrarily agreeing to a procedure, test, or surgery? As the patient you have the right to ask questions and request another opinion. When you are sick, perhaps depressed or frightened you might not think of  questioning the physician. That is where your advocate joins the party.

Hospitals often have patient advocates who assist with questions on financial concerns and relay issues you may be having. There are outside agencies that can be hired to assist a patient through the complex world of medicine. Or you may be lucky enough to have a family member or friend who will be willing to act as your advocate under these circumstances.

While the interactions with doctors and nurses may be at the top of your list where assistance is required, someone should be making sure that your concerns are being addressed. Is the diet you are on suitable for you? If you are a diabetic, are you on an appropriate diet to meet your needs while sick? As a kidney transplant patient on a blood thinner I cannot have too much protein, too many carbohydrates or food high in vitamin K. And because some of the drugs I take causes high blood pressure I am on a low sodium diet. This seems like something that wouldn’t need review, but you’d be surprised at how many times I have been put on a general diet despite all my special needs.

What if you or I have been in bed for 4 days without getting up? Do we need physical therapy to help me walk? What about occupational therapy? Did anyone order breathing treatments if you have pulmonary fibrosis or a susceptibility to pneumonia? Doctors only see you for a short time each day and nurses are often in and out with medications, but don’t always focus on these details. After days in bed, it’s not uncommon to be told we are being discharged tomorrow and we’ve never gotten up to walk. Shouldn’t someone at the hospital see if you can stand up without getting dizzy before sending you home?

Then there is the endless confusion with medications. Often when I have been admitted to the hospital changes are made to the medications I have been taking at home. It is common something new gets added. Do I go back to the prior medications when I am home? Do I add the new prescriptions to the old ones? Was a new medication meant to replace a prior one? Often patients go home with very unclear ideas on what they should be taking. This can lead to all sorts of problems including re-admission for either taking too many medications, too few, or the wrong ones. An advocate can help you clear up misunderstandings before they become life-threatening problems.

One of the things we learned during the COVID pandemic was there might be times when a family member or advocate is not allowed in the hospital by your bedside. You may be doing all your communication by FaceTime, Zoom, or phone. You need to have a firmly developed method of contact established before the next such situation arises.

Make sure you establish a healthcare power of attorney and complete a Living Will. Some thoughtful preparation can make even the most trying of times more bearable. Take a copy with you to the hospital. In very tense times we want to make certain our advocate and physician(s) are in sync with what medical procedures should be administered if our health takes a dramatic change.

Above all else, you need to get a good idea of what your expectations, hopes and desires are as they relate to your health and longevity. Then clearly communicate this to your advocate and physician(s). This needs to be reviewed as we age and/or our health changes.

Modern medicine is doing great things to keep us alive longer. We want to make sure that it isn’t just longer, but also better. Everyone is different. Some people want to live at any cost, some just want to be comfortable. Others know they have come to the point when they don’t want to continue fighting. Those choices are up to you. Advanced planning and thoughtful conversations can make an exceedingly difficult time much easier.