How Government, Medicine, and Doctors Failed A Dying Old Man

When it comes to basic human rights in the US, it's no longer a matter of whether we've regressed, but just how far. Reflecting on the principles established 233 years ago in the Eighth Amendment – which prohibits excessive bail, excessive fines, and cruel and unusual punishments – it’s clear we've strayed far from these ideals.

For more than a decade, many, including myself, have highlighted the abject cruelty and unusual punishment inflicted on millions of people in pain. This suffering began when the CDC, DEA, NGOs (1), and state medical boards and legislators started involuntarily tapering or discontinuing patients' pain medications against their wishes.

This is medical cruelty on a huge scale.

But sometimes a single case of torment can paint a more intimate picture and provide a captivating story. I know this because I've been personally involved in a horrific case of cruelty in the form of physician disincentive and indifference, and probably a breach of care as well. 

Of course, we are all going to die, but none of us would choose to do so under the circumstances that my 93-year-old friend Harry (not his real name) was forced to endure.  It is a story of medical and ethical neglect borne out of government ignorance and malfeasance, and it needs to be told because what happened to Harry could easily happen to any of us. 

Harry's predicament was not simply the "usual" story – the inability of people in pain to get opioid medications when needed. Instead, it's about the secondary consequences of the catastrophic war on opioids. Thanks to Prescription Drug Monitoring Programs (PDMPs) – databases that were originally intended to stop pill mills – the DEA can count every pill of every controlled substance, no matter how benign. And count they do, which has put an end to privacy that used to be taken for granted and has also provided a powerful disincentive for doctors to write a script for any controlled substance, even sedatives, and sleep aids. 

Harry, who led a full and vibrant life, got his cancer diagnosis about a decade ago. He never let it stop him. If anything, he stepped it up, almost like he was giving his disease the middle finger. Ninety-year-old men, especially those with a deadly form of cancer, don't typically go cross-country skiing, drive speedboats, repair car engines, or cook, but nothing stopped him. Harry – a stubborn old goat if ever there were one – refused to let the cancer slow him down, even during times when he was undergoing treatment for it. 

Eventually, old age or disease gets even the most stubborn of goats. About a year ago his health took a downturn, which is not surprising since he developed bone metastases, which can be especially painful. He persevered with both chemo and radiation, but it became obvious that his time of health was running out. About three months ago he decided he'd had enough. There would be no more treatments; he was ready to die.

As a supposedly humane society, the very least we can be expected to provide a dying old man is freedom from pain, sedation if necessary, and a good night's sleep. Harry got none of these. His end-of-life medical care was an unqualified disgrace.

Failures and more failures

It might be "easy" to explain away Harry's predicament as a sick old man being left to fall through the cracks because of the lack of advocacy of family or friends. But Harry had both and we were neither quiet nor willing to accept substandard care from his doctors. Did a group of educated, devoted, and vocal family and friends make a difference in his care? Not one damn bit. We were stonewalled and ignored.

Harry stopped eating two weeks before he died and would only take sips of water. Of course, he was in pain and wanted nothing more than to sleep, and this is where the barbarism of our end-of-life "care" became especially evident. For severe pain, Harry was prescribed tramadol, a very weak opioid that is 10-20 times less effective than morphine. Not OxyContin, not a fentanyl patch, just a barely useful drug that is classified as a Schedule IV controlled substance, the second least restrictive class. 

As if this wasn't bad enough, Harry, whose only respite from his awful existence was sleep, could not sleep at night. His oncologist refused to write a script for Ambien, a very safe, common sleep aid, because there could potentially be an interaction with the tramadol. Nor would the doctor prescribe Xanax or Valium for the same reason. Which is no reason at all. A low-dose combination of two of these three Schedule IV drugs is going to do what? Perhaps let the dying man get a good night's sleep and, if he's lucky, not wake up in the morning. Finally, the doctor's office relented, saying that he'd write a script for Ambien but not without an office visit, even though Harry could no longer get out of bed. 

Why was a dying man treated in a way you'd never treat a stray dog or cat? Was it indifference? Laziness? Hunger for a fee?  Fear of reprisal? Some combination of all four? It doesn't matter. Harry's doctors failed him miserably and whatever the reason, this is something that America's doctors all face to varying degrees.  

How did this sad saga end? Finally, we found someone who cared. The family decided on hospice care; once the nurses arrived everything changed. Harry was given whatever he needed. A bit of morphine under the tongue and his pain was controlled, allowing him to sleep comfortably. One morning he simply didn't wake up. What a difference. 

My colleague, Dr. Henry Miller, was so mortified by this story that he asked if I would allow him to put a quote in this article. Of course, I will.

Some physicians and other medical professionals do take seriously end-of-life care. The prototype is UCLA’s "3 Wishes Program," a palliative care initiative in which clinicians inquire about and implement final wishes for patients who are expected to die imminently. It recognizes that in their final hours, most people have fears, regrets, and maybe a last, often simple wish. But most of all, the staff are dedicated to keeping the patient comfortable. You can read here about the program and the heroes who work there.

NOTE:

1. The NGO in question is the Physicians for Responsible Opioid Prescribing, in my opinion, a thoroughly reprehensible and corrupt group of academic faux-physicians that is the primary reason people are being denied pain medication under the guise of protection from addiction.