Otherwise Alone

Walk with me a moment…you are an 80 year old widow, live alone, a quiet life, with your popcorn and politics, and suddenly something changes.  The left side of your body is not moving quite right and your thoughts seem slower…foggier.  A kind neighbor convinces you to go to the hospital and this is where our story really begins…

“Ma’am, you need to be admitted, is there someone we can call?”

“No”

Scared and alone you learn that you have had several mini strokes, that you need tests, and possibly surgery…but that’s not right, you are healthy, strong, independent.  Tests and surgeries?  You have never needed them before…maybe you don’t really need them now.  80 is a good long life…and it has been a good life…I mean, what’s the worst that could happen?  Death?  That doesn’t scare you, not as much as those tests…and surgery. 

So you tell the nurses and doctors: no tests, no pokes, no prods, and certainly no surgery.  Suddenly, the mood changes, the nurses once kind and calm are now testy and aggravated.  The physicians, who are supposed to be explaining the situation, are frustrated and condescending.  Don’t they understand?  You have lived a good life and now it must be time to go.  It’s like you aren’t speaking the same language…why won’t they understand?

The star of this tale happens to be my darling aunt, and thankfully this story has a happy ending.  Her favorite niece (me of course)…you don’t believe me…who’s telling this story anyway?  As I was saying, her favorite niece happens to speak fluent “medical-ease” and was able to broker a deal between clinician and client.  She had the tests and surgery and is happily back to her popcorn and politicking.

As a clinical research coordinator at an oncology center, I interact with very ill patients every day.  After my aunt’s experience, I never looked at patients who came to the hospital alone in the same way.  I believe more than ever that every patient needs an advocate.  It doesn’t matter how brilliant or independent you are in everyday life, when you are truly sick you need a buffer, a neutral set of eyes and ears to help control the situation, to make sure that everyone is speaking the same language.

Years ago, another aunt was the first to tell me I had a talent for this translation, she had recently been diagnosed with diabetes and was home, still not having any idea what that really meant.  I was a science undergrad at the time and was able to bridge the gap for her.  As a reward for my efforts she dubbed me the official “family medical translator.”  This experience taught me a valuable lesson about how patients may act like they understand their diagnosis when at the physician’s office, but ultimately leave confused.

As medical professionals, it is certainly difficult to know where each individual patient is coming from, but some general assumptions can be made when you are talking about serious, terminal, or emergency health issues.  In these cases, you are likely dealing with someone who is both scared and overwhelmed.  When we live this life everyday it is easy for our patients to blur, for us to forget that they are more than just sick and in need of care, but are complete lives, with stories, ups/downs, family and friends. 

Also, it is easy to forget, when we work in a hospital or with the terminally ill, that this day is unique and intense for each of our patients.  It was once explained to me like this: when we as medical professionals walk the hospital halls our world is in black and white, it is our routine and we will remember today no more than yesterday, but for every patient we meet, that day is being lived in vibrant color and will be forever branded on their memory.  I try hard to remember this when I interact with patients at the hospital, on some days and with some patients it is easier than others. 

In the medical community, we should make a concerted effort to better understand and recognize the emotional needs of patients.  This may mean you sit and chat with a patient for an extra few minutes, or help translate between them and a clinician, or kindly encourage them to call a friend or family member for support.  All patients can benefit from this, but we should try to be particularly aware of the emotional needs of those patients who are otherwise alone.