Goldilocks, Dad and Finding Care That’s Just Right

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My dad retired in the 1980s. In addition to his pension he had also earned health insurance coverage for the rest of his life. Over time, as you can imagine, the actual value of that insurance became more and more evident; In all likelihood, it was a many-years-of-life saver, because he lived until 2012.

But then, I think his health insurance may have killed him, too.

Dad retired early at the ripe old age of 60, because when he was 59, he was diagnosed with prostate cancer. His resulting surgery did not successfully remove all the cancer cells, so Dad then dealt with that cancer for 24 more years. His cadillac health insurance, which covered everything you can imagine – and then some – and which required only a $3 co-pay for anything, served him very well for decades.

Or did it?

In fact, a review of Dad’s last two years of life indicates that having that excellent health insurance in all likelihood contributed to his death.

Here’s why:

By the time Dad was 80, he had developed spinal stenosis in his lower back, a very painful narrowing within the spinal column which then chafes against the spinal chord. Over time the pain grew worse and worse, affecting everything he did. He tried everything to relieve it except narcotic drugs, including other non-addictive drugs, exercise, even herbal supplements. While some of his efforts partially relieved his pain, he was never pain-free for the last 3+ years of his life.

Then he began talking about back surgery, and at that point, I stepped in as his advocate. I read everything I could read, I talked to a handful of physician friends – primary care, neurosurgeons and orthopedics…  NONE of them – not one – recommended Dad consider surgery. They put his chances of any pain relief at all at between 10-20%, and warned that at his age – 82 by then – such difficult surgery could create even bigger problems, especially in light of Dad’s prostate cancer.

But Dad would hear none of it (because, like many of us experience, somehow our parents never see us getting much older than the age of 12!) Dad had already been to see a surgeon who regaled him with the pain-relieving benefits of doing surgery. I could hardly believe that was true, and insisted on going with Dad to his next appointment.  Sure enough, the surgeon, a skilled salesman, talked about how he often operated on patients who were in their 80s, and how so many of them thanked him afterward. I asked him specifics:  how long was the surgery, how long was the recovery, how much time in rehab, how long would it be until the pain of the surgery itself would dissipate, and then how long until Dad would feel reduced pain from the spinal stenosis, etc etc etc.  The surgeon had answers for them all, framed in such a way that left Dad to interpret them as positive outcomes.

When I asked how Dad’s prostate cancer could possibly affect outcomes, the surgeon poo-poo’d the concern. “That has nothing to do with his spinal stenosis. It’s not even a consideration.” 

Dad was unwilling to get a second opinion. He liked the first one, he told me. None of the “smart patient” rules applied to him. He had the information he wanted.

But I just KNEW surgery would be trouble, and it was. I won’t bore you with the details, but suffice it to say that Dad not only was never relieved of the spinal stenosis pain, but within about four months of the surgery, it was discovered that his prostate cancer had moved into his bones. He died 18 months later having finally found some relief with hydrocodone. Conversations with those same doctors mentioned above indicate that it’s entirely possible that the surgery caused the cancer to begin metastasizing. Bone cancer and some metastases in his brain finally caused Dad’s death.

For the record, a few months before Dad died, about 16 months after the surgery, he told me that having that surgery was the worst decision he had ever made, and he wished he had not had it. (No. I did not say “I told you so!”)

So what does all that have to do with his cadillac health insurance? 

I maintain to this day, and many others have agreed including other doctors and insurance people, that the only reason the surgeon was so keen to operate on Dad was because Dad had such great health insurance. The reimbursements for that surgery were as big as they get. Dad never paused over the cost, because he didn’t bear any of it (OK – he paid $3.) The very greedy surgeon saw an opportunity and sold it – and Dad paid the price.

Those who work in the world of healthcare know that such a treatment as back surgery for an 82-year-old man with prostate cancer, is overtreatment and ill-advised. It was too much. It never should have taken place. It was purely a money-grab from an elderly man in pain who had great insurance, leaving him to suffer the consequences.

(Just to be clear, yes, I realize Dad was the one who instigated the study of the possibility of surgery, and Dad was the one who made the decision. It was entirely his responsibility; he was the one who made a bad decision. But the skids were most definitely greased by his great health insurance – and that’s today’s point.)

What does this have to do with advocacy?

As advocates, we must always be sure that we support client decisions that will lead to treatment that is just right.  Like Goldilocks and her porridge, chairs and beds, we don’t want our clients making choices that will be too big or too small, too hot or too cold, too much or too little.

chairs

In a world of follow-the-money healthcare, it’s too easy for patients to get care that isn’t what they should be getting, or lacking care they should be receiving. Most often we hear about patients who can’t or don’t choose to get the care they need – it’s too little, often too late, and decisions are based not on what the patient needs medically; rather what they can or can’t afford, or how much money a doctor or hospital or insurance company can or can’t make, or will or won’t lose.

Dad’s story reminds us of the other extreme, where he was viewed as the cash-cow, which resulted in too much care. Too much care can be as dangerous as not enough.

When we work with our clients, we want them to know that we helped them make decisions that were JUST RIGHT.  That requires 360° vigilance surrounding all decisions they make to be sure they understand, even in a devil’s advocate sort of way, what the potential consequences of any decision will be. That is the informed consent that providers don’t provide – so in order to do our jobs most effectively, we must provide it instead.

And – as proved by Dad’s story – this is often NOT something a loved one can provide!  No matter how healthcare-system-savvy a loved one is, the reality check of too much vs too little can be too easily dismissed as being, or not being supportive and loving.

goldilocks

As private, professional advocates, it’s our role to provide resources and support to help our clients mimic Goldilocks, to choose what is JUST RIGHT for them, no matter what the moneymakers recommend.

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Comments

  1. Ellen L.  September 15, 2015

    Your article resonates with me, as an aspiring Patient Advocate and the daughter of someone who’s health is declining due to over medication, over treatment, yet lack of caring and coordination. While my Mom suffers from the affects of Type 2 diabetes and severe depression, my parents have excellent health insurance. I could see how this can be a blessing and a curse, especially to those of our parents’ generation. Individuals of that generation do not question the doctor. As my Mom was sent from specialist to specialist, who only prescribed a new medication without coordinating with the others, the physicians and pharmaceutical companies have been the only ones to gain. My parents do what the doctor says, pay out of pocket what they need to, knowing insurance will pick up the bulk of the costs. I have been “scolded” for questioning the doctors on my Mom’s behalf. As you have said, not only have we never grown up past the age of 12, but the doctors know best and are to be revered.

    As Patient Advocates, we need to question the system, while advocating for our families, and the families of others. The tricky part is to do this in a way that is non threatening to the integrity of the physician, or the independence of those we care about.

    Trisha, my heart goes out to the struggle you had with your Dad’s health and care. As I said, I deeply empathize, as I’m sure many of us can.

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