Please choose the correct response:
We are all care-givers at some point in our lives.
We will all require care-givers at some point in our lives
It is 3PM on a hot August afternoon in North Carolina. Gathering around my brother Bruce in the spare bedroom of my home are my father, my wife Carol, my brother s children and the occasional visitor.
Bruce is 54- although he stopped smoking fifteen years ago we are now tearfully sharing the last moments of his life. Through his semi-conscious mind, he listens to our conversation.
Leaning over my sweet brother I ask him if he would like some more morphine. He struggles to respond, reaching deep within himself and utters a raspy, lungs filling with fluid “JEFF?”
I respond with yes and again ask him if he needs more pain medication? Looking up he utters the last words I will hear from him “Yes. Please”.
At 8:30 PM, Bruce loses control of his bowels. My father, Carol and I gently roll him on his side to change the bedding. He struggles against us, yet we accomplish the task. We quickly change the bedding, clean the poop from his butt and –like a newborn baby, turn him over on his side.
A small trickle of blood spills forth from his lips and his eyes begin to dilate. “My God He’s Gone” says my wife. Leaning down close to his face I stare into his eyes, tell him he is safe, he is loved and to “go toward the light”. Bruce takes one final breath in my arms; his body jerks and he is gone.
Collapsing on his body I scream out the agony of loss. Making sounds like a little boy I weep “My brudder, Bruce, Oh God”. My father falls on top of me. The man who fought in the Philippines, and buried his wife just one year earlier begins sobbing. We become a grief sandwich; my dead brother, my father, my wife and I: All piled up on the hospital bed. Finally…it was over.
Many do not receive the blessing of being present during the death of a loved one at home. For most, this episode occurs in a clinical environment; for a variety of reasons I suppose. But my career in medicine had given me sufficient insight to understand how ill-prepared our society is to “heal a person into death”.
Bruce and I had a contract. When he received his diagnosis 18 months previously we discussed –in detail- his wishes, the mechanisms to determine what the best treatment approach is; the statistical probability of survival and the financial cost his family in a variety of scenarios. One might think this is all done for us by our physician, or social workers, or ‘for-Gods-Sake” someone else. Unless of course, he or she has spent the last 34 years working as clinician, administrator and chronic disease program manager across all settings of healthcare. A new perspective emerges for folks with this occupational history. An awareness of true cost, profit margins and unending business opportunities that have gathered so much wealth for “value added” service providers in a free market economy. We also understand that in America, we spend twice as much per-capita on health care of any industrialized nation, have lower health outcomes and can be the only Nation to claim health care cost as the leading cause of bankruptcy.
Not so? Well, in 1996 I was flown down to New York City by my employer, a skilled nursing organization. My job at the time: Evaluate five patients who were permanently on life support and losing their financial resources. My company, under contract with NY Hospitals would move these patients to another State establish residency for the individual and collect the Medicaid reimbursement from the State where we were located. This reimbursement for a person on a ventilator was double the New York Rate.
As I deplaned from our corporate Cessna that day, one of the Senior VPS asked “How long do you think that last case you looked at will live Jeff”. You see, buried deep within that – statement was the profit calculation. I remember that night well. Carol and I had just been married. When I arrived home I sobbed in her arms; Fearing for all of us.
What do I know as a caregiver and care recipient who has had diabetes for 47 of 57 years of his life? Well, that if we have any sense of humanity within our value system and we are human: We will both give and receive care before we die.
Our system is not designed to accept death. As a result, where resources are unavailable many Americans are left to care for their dying loved ones with few skills. However, where the administrative processes are burdensome, we should also recognize the beauty and reward of helping a loved one cope with these phases in their life. In actuality I used to send patients home on ventilators having educated the family to care for them. They did just fine and in over ten years, no-one ever lost their life due to a family member’s ignorance or misjudgment. PLEASE: I BEG YOU TO ASK ME ABOUT THE HOSPITAL IN CONTAST TO THE LAST STATEMENT.
I suggest that we include a social contract to educate our children as to the process of acquiring health-care and the personal commitment required for managing our cost-of-care as our system changes. High school would be a great place to start.
I know that we have choices but many of us in America do not believe we have any power when it comes to the treatment we receive, the cost of the treatment, the alternatives and best practices. If we did, we wouldn’t require case managers, patient advocates, Accountable Care Organizations to assure we are treated well. Heck, the new health reform assumes we are unable to do our own research or select the right provider. This is why these job descriptions exist and corporations are contracted to keep watch on the quality of care we receive.
I submit that this may be true for now. But I also submit a challenge to Americans: A challenge for all of us to step away from our televisions and disregard sound-bites. A challenge to become self – educated consumers. It is not as complicated as one might think but you need to understand the shell game.
And by the way, the shell-game is not going away.