Thursday, December 17, 2015

Future of Healthcare Scenario: Abandoned

By Paula Pike
HCA:507.90 Organizational Innovation, Creativity & Change Management in Healthcare
Post University

Born in 1960, I never imagined I'd live past my 80th birthday, let alone 60 years of marriage to my beautiful bride, Anna.  Life had been good until I was diagnosed with Parkinson's disease in 2025.  After a battery of tests in April of 2025, Dr. Arbeteen, a respected neurologist in New York City, handed me my death sentence.  In an effort to manage my symptoms and delay the progression of disease, Dr. Arbeteen prescribed a daunting medication regimen along with physical therapy.  The disease responded poorly to the pharmaceutical management, if at all, and my spirit was saddened by my dependence on others.

Parkinson’s is a horrible, progressive disease robbing my wife and me of our independence.  Now, Anna is burdened with complete responsibility for my care: she bathes me, feeds me, repositions me, and changes my diaper.  It is a degrading position to be in and one I despise.  Recently I became unable to walk, imprisoned in a hospital bed in our living room; the place where we celebrated birthdays, anniversaries, and holidays now houses my motionless and expressionless human shell.  My wife is ill herself, suffering from coronary artery disease and a past myocardial infarction.  I love my wife, but to be honest, she hasn't been the best caretaker of her physical self.  She gained 50 pounds over the last five years adding to her already moderately obese frame.  My Anna is frequently out of breath and I wonder whom the good Lord will take first; secretly, I pray it is I.

Looking back, Anna and I enjoyed the finer things in life.  “Baby-boomers” they coined our generation!  Anna was involved in many equal rights for women activities.  She studied law at Columbia and passed the bar her very first attempt.  She quickly moved from associate, to junior partner, to partner at New York’s largest law firm, Skadden, Arps, Slate, Meagher & Flom.  My Anna was a go-getter, she worked long weeks and long hours; which is what I assume resulted in her increased stress level, hypertension, and myocardial infarction at age 50.  I too worked in New York City as a stockbroker on the New York Stock Exchange.  My hours were really no different than Anna’s, which is why I think we never had children; we were always so busy with work and advancing our careers.  We were not the only childless couple in our friendship circle, the days of filling a home with children and a stay-at-home mother was a thing of the past.

As I reflect on our lives, I wonder what it would have been like to slow down a little and have a family.  At least now, in my final years of my diseased life, I might have had the benefit of one of my children to care for me rather than my ailing Anna.  My friend, William, has advanced dementia.  He is a prisoner in both mind and body.  He has two children but both have their own lives and careers outside of New York.  Unfortunately, William’s wife died twelve years ago and his children moved him to a retirement village on the East Side.  Even having children, William lacks available family caregivers leaving him to be cared for by the retirement village staff.  Thankfully the dementia has robbed William of his memories and he doesn’t long for his son and daughter’s companionship and presence.

The caregiver pool for the aged is quickly evaporating; the government’s Medicare program went bust about a decade ago leaving those of us 65 and older to participate via additional taxes to the universal health care plan.  My entire working life my paycheck was robbed of thousands of dollars to pay for Medicare benefits that I had only briefly received.  Now, additional taxes on my retirement income are redirected to the national universal health plan.  Thankfully, Anna and I had managed to “sock away” a good-sized nest egg, so the $5000 monthly premium isn’t such a financial shock and burden.  Even so, the healthcare system leaves my Anna to care for me without assistance of a companion, home health aide, or nurse.

Today, I awaken to the wet, gargled cough of my sweet bride.  Her myocardial infarction weakened her heart’s functional ability and every so often she has these flair ups of congestive heart failure.  Usually, an extra dose or two of her Lasix pill reverses the fluid overload but today this isn’t the case.  She sits in the recliner next to my hospital bed and puffs into her breathing machine, which delivers medicine directly to her lungs.  I am scared for her and for me.  I watch her chest rise and fall deeply and deliberately and I pray that the medicine is able to reverse her shortness of breath.  It’s 9AM and she hasn’t changed my soiled undergarments from the night, brushed my teeth, washed my body, or fed me my breakfast.  My stomach growls but my Anna cannot hear it over the noise of her breathing machine.  I am scared.

Finally, the medicine delivery has completed and Anna opens her electronic health record chart and begins to enter data for the community on-call nurse to review.  She places her forefinger on a pad to the right of the screen and instantly her blood pressure, pulse, and oxygen saturation are recorded.  She then stands for a moment on a glass scale that records her weight (a measurement of fluid overload).  Finally, she records the medicines she has taken this morning; within minutes she receives additional instructions form the community nurse on next steps to control her exacerbation.  Anna glances my way and produces a small smile as to assure me that everything is going to be all right.  I am scared.

My Anna is a strong woman and she cares for me despite her own afflictions.  Anna promised me the day we married, “to care for me in sickness and in health” she says with a smile.  She gets up from her recliner and begins our daily grind that puts additional strain on her heart and spirit.  First, she uses a Hoyer lift to move my stiffened corpse to an oversized tub.  Thankfully, the machine does most of the work for Anna.  There is a track built into our hardwood floor that moves the Hoyer along a stated path and places me in this tub.  The water disintegrates my soiled undergarments and then, like a car wash, my body is scrubbed.  As the tub drains, hot air is forcefully blown on my body and the Hoyer lift moves me back to my hospital bed of fresh linens that Anna has so carefully prepared while I was in the tub.  As part of the health care plan, meals specifically designed for Anna and I are delivered to our home.  Anna pops mine in the convection oven and then feeds me.  Every spoonful is placed gently in my mouth, allowing sufficient time for me to chew and swallow (although it is a dysphagia pureed diet, and there really isn’t much chewing involved) all the while my Anna is joyfully humming.

Just as I finish my last bite, the electronic medical record laptop alarms, reminding Anna to repeat her battery of data collection for review and next steps.  My stoic Anna talks back to the inanimate object, “I’ll get to you when I’m finished here”.   Anna always puts herself last.  She dabs by mouth with a soft, white napkin and takes the dishes to the kitchen.  She returns with an ultrasonic toothbrush, brushes my teeth and combs what is left of my silver grey hair.  All the while my Anna is joyfully humming.

I hate the burden I have become on my Anna and yet, I am thankful that I have her to care for me.  If I didn’t have Anna, what would have happened to me?  I am scared.

The electronic medical record laptop alarms just a little bit louder this time.  “All right already”, my Anna replies in disgust.  She dutifully sits in the recliner and repeats the data collection steps.  She receives new instructions from the community nurse.  She looks at me and rolls her eyes, mumbling “for the love of Jesus”.  If I had the ability to raise my eyebrows, as if to question what she meant by that, I would…but I can’t as the Parkinson’s stole that from me too!  My Anna gets up in a huff, and retreats to the bathroom to the pharmaceutical closet, I can hear the door unlatch and I wonder what the community nurse has recommended.  If only I could call out and ask, but my words are always garbled leaving me and Anna frustrated that she cannot understand what I said or need.  So instead, I lay there, motionless, listening.  I hear a loud noise.  I envision my Anna on the floor.  I cannot even mouth any words.  My heart begins to pound, I feel sweat forming on my brow and begin to drip down the sides of my face.  I cannot move my fingers to my face to wipe the sweat away as the Parkinson’s has left me motionless.  I listen and hear nothing.  The house is silent.  I am scared.

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