Cancer, Aging, & Healthcare: America, We have a problem!
I find myself in an unfortunate spot. Both my mother and father are suffering from seemingly intractable health problems and my wife was just diagnosed with breast cancer. My parents, each suffering for years with chronic pain have been victimized by aimless care in an over burdened, understaffed, and misguided healthcare system. The maladies of a healthcare system driven by economists has left us with a patient care system that is often just mediocre and sometimes atrocious. More evidence for this has played out in the sequence of events that has left cancer undiagnosed and unabated inside my wife’s breast for six months after she first detected a lump.
What I have personally witnessed over the last year has left me appalled. There is not enough time, space, or reader interest, I suppose, to take you through these respective journeys. And my anecdotes, as deeply meaningful as they are to me, tell only a minute fraction of a complicated story. Multiple factors have coalesced to degrade healthcare, and these forces have been primarily dictated by the motive for profit, austerity, or the quest for financial viability. These interests have seemingly superseded the drive for quality care.
When I had my own private practice (as a Licensed Psychologist) the reimbursement schedules set up by insurance companies provided financial incentives for care provision that were incompatible with my training and my personal and ethical care standards. Viability as a service provider demanded either compliance or unsustainable practices. In large part due to these realities I chose a different career path. This is all too common. Two of the best medical doctors I’ve known have left the field because of similar issues. When you can’t do what’s right and you feel like you have to thin your care to stay in business, the whole patient care scenario becomes compromised.
Medical care for run of the mill ailments seems adequate (if you are fortunate enough to have health insurance); however, when issues are complex or they involve multiple body systems, the quality of care seems to break down. My father, for instance has many health issues. His care, when any of these issues becomes acute, pits one specialist against another and thus one body system against another. Just recently his acute pulmonary difficulties landed him in the ER and there, the care, as prescribed by an ER Doc, resulted in an adverse reaction necessitating yet another ER visit that resulted in a worsening response necessitating admission to the hospital.
His care has been so fragmented and communication so compromised that he experienced in this circumstance, a doctor induced overdose. Looking back over the last several months, he has experienced intolerable amounts of pain and suffering – the likes of which no one should have to experience.
While in the Hospital after his initial diagnosis of pneumonia, he fell and injured his back causing significant and persistent pain that was initially misdiagnosed as pleurisy. Months of pain and misdiagnoses left lingering unresolved pain. My mother likewise has an idiopathic issue that results in protracted and unimaginable pain. The poor women has experienced dumbfounded docs and care that resulted in multiple re-admissions and ultimately no resolution of the issue. We have traveled to distant cities to see experts with hopes that we can get her issue under control. An appointment just this week left even the Doctors at Cleveland Clinic shrugging their shoulders in ignorance. Idiopathic pain unresolvable by the best. This isn’t anyone’s particular fault, but it leaves my mother wondering when the next episode will incapacitate her with pain. That is no way to live. She now needs experts in pain management.
My parents are strong, independent, self-reliant, humble and unassuming people who do not have a bone of entitlement in their make-up. They have worked hard throughout their lives as solid contributors to society. They are careful and cautious people trying to do what is right. What they have gone through in their golden years is tragic. And some of it, certainly not all of it, lies at the feet of modern health care.
Now, we have cancer care on the immediate horizon. I cannot and will not tolerate the mediocrity that pervades the healthcare system in pursuit of my wife’s recovery. We will advocate for the best possible care available, and will not accept less than best practices should our insurance company attempt to compromise my wife’s care to save a buck. This will not be easy and perhaps not cheap, but life and time are precious. Far more precious than the material possessions that surround us. I keep saying that if Lance Armstrong can survive the extensive cancer he had and go on to win a record number Tours de France, than we can beat this. The only question is – will we get Tier 1 level of care?
Clearly there are three tiers of healthcare in the United States. There is the reactive or non-existent care received by the poor and those at the lower end of the SES spectrum who cannot afford insurance. Then there is the care for those of us with health insurance – adequate for run of the mill ailments – but stressed by complexity. Then there is Tier 1 care for those with no financial restraints. Money talks and it can buy you the best care in the world.
We do not have limitless resources or the fame and backing that Lance had, but but we do have resolve, determination, and the best breast cancer surgeon in Western New York. I laid it out on the table when we met with her doctor:
“Only the best for my wife! I don’t want an insurance bureaucrat making medical decisions for us. I’ll sell my house if I need to – Tier 1 Care – nothing less!”
And so the journey begins. We have a lot to learn and a formidable opponent. Cancer can be tough too.