Posted in Having a Voice in Healthcare, Living with Illness

Medicine and the Human Factor

I was watching the news yesterday when a report about a Southwest Airlines pilot hit the airwaves.  Evidently, the pilot didn’t know that his mic was stuck in the on position and he went on a tirade about the fact that the flight attendants were either gay, old, or fat, leaving him with limited choices for sexual exploits.  It obviously took those on the radio frequency by surprise, but more importantly it raised some eyebrows amongst the Southwest Airlines crews.  So what does this have to do with being diagnosed with a chronic or life-threatening illness?

It’s been discussed and written about in multiple books about how physicians refer to patients as “the kidney in room 202”, or “the brain tumor in 202”, reducing you, the patient, to the most minimal of descriptions.  Why is this important?  Because the goal is to have the medical team look at you as the total package, not simply your disease.  There is more to you than simply your diagnosis; the diagnosis is a part of you, it doesn’t define you.  When or if we hear providers speak this way it reduces our faith in them as people.  This is why so many medical schools are starting to incorporate Medical Humanities into their curriculums.  The idea that if you bring some humanity into the medical arena the relationships between physician and patient get better, diagnostics are more accurate because future physicians are being trained to listen to the patient’s story; their illness narrative.

If you haven’t read Jerome Groopman’s, “How Doctor’s Think”, please finish this post and rush to the bookstore for a copy of this book.  If you’ve been diagnosed with a chronic or life-threatening illness this book should be surgically attached to your body so you have it handy at all times.  The introduction shows the importance of the illness narrative because it helped diagnose a young woman who had been battling her illness for over 15 years.

Words are powerful so using them to improve the doctor-patient relationship instead of hinder it is crucial on your journey to health and healing.  As your illness narrative unfurls it provides vital information for your care and treatment.  The doctor should be more of a detective then mechanic.

What would you like your medical provider to know about you?  How do you think your story could help in your care and treatment?  What have you been leaving out of your story when you visit the doctor, that could be the linchpin that makes you better or well?

Posted in Caregiving

What Part of the Puzzle Are You?

Welcome to Caregiver Friday!!

When dealing with an illness in the family it’s easy to get caught up in all areas of the patient’s life.  The doctor’s may ask about previous health problems, diet, work, social support, stress factors and the list goes on and on.  Unfortunately many medical providers don’t ask the caregiver about what’s going on and that means that potentially, there’s a big piece of the puzzle missing that could help, even save the life the patient.

Ever wonder why more medical providers don’t ask the caregiver(s) what’s going on?  Ever wonder why you may have been made to feel like more of a hindrance than a help?  Ever consider how you can change the way caregivers are viewed by the medical establishment?

I believe that the new era of medicine is beginning to look beyond the story of the patient because it’s only a part of the story.  No patient lives in a vacuum and that means that your story, the caregiver’s story is important to not only the diagnosis but the treatment of the patient.  You are often the missing piece of the puzzle and one that can unlock many doors for the medical community.

One of the advantages you have and the knowledge you possess is a direct result of ongoing access to the patient.  You know their routines, their habits, and their tolerance levels.  You understand their level of frustration and see how it plays out in their daily lives.  You know the moment the words come out of the doctor’s mouth whether or not the patient will be compliant based on your own history with the patient.  Do you see how powerful that is?  Can you even conceive of how more effective the medical community can be if they have the knowledge you possess?

An advantage you have as a caregiver is you’re not in the midst of the physical struggle; although you are just as involved in the emotional and spiritual struggle of a health challenge in the family.  You have a perspective that is unique to the illness scenario.  It’s more of a birds-eye view so you have a broader vision.  Having that perspective and sharing it with the provider can shorten the doctor’s learning curve about how best to deal with the patient. 

Utilize the information you’ve gathered over the years about the person being cared for by sharing it with those who need the information.  I can’t tell you how many times a patient will be having symptoms and doesn’t tell the doctor during the visit, but the caregiver will share the information and it’s as if the heavens had opened up allowing the light to shine through.  It doesn’t mean that you’re betraying the patient because sometimes they don’t know what’s in their own best interest.

Thank you for taking this responsibility so seriously.  It’s obvious that as a caregiver/wellness partner you walk a fine line between advocate and informant.  You have the knowledge gained by observation.  Your insights into what works for the patient and what doesn’t can save everyone including the patient a lot of pain, suffering, and disappointment. 

It boils down to this; you’re a gift!