Why I am an advocate for people in chronic pain.
My mother died peacefully. She was in no pain. She was not nearly so fortunate in life insofar as you simply couldn’t say that about her later years.
My mom had been a brittle diabetic for a long time and while in recent years she had miraculously survived two prior battles with sepsis ending up in ICU on a vent both times, we all knew that the next time would likely be it. When it hit this time it was savage. Ten days from when she first developed a cellulitis to death. Her limited reserves could no longer hold it off. The little woman who could barely shuffle from her bedroom to her kitchen was no longer a match for the bugs and their onslaught. Her last 10 days were marked by the use of many big guns, from high tech ICU wonders to the most powerful and costly antibiotics on the planet. In our healthcare system we can really gear up in an effort to deny death a victory.
Our healthcare system has its islands of extreme compassion, too. From nurses wiping her forehead when she was hot with fever, to the use of propofol keeping her calm and oblivious while she was dying and on a vent, to the entire caring ICU staff all being there after she passed, offering comfort. Many would prefer not to die in hospital; but it’s a blessing that when it does play out there, it can sometimes be dignified and peaceful in its own way.
If only we took care of people with chronic pain with the same empathy, precision and zeal.
For none of this could be as readily said about the day to day grind of caring for people with relentless, inexorable chronic diseases such as diabetes and arthritis and their usual partner in crime, chronic pain. If you are going to die soon, you might merit access to medications and compassion in most people’s minds. Never mind the fact that most of my chronic pain patients considered my cancer patients lucky. Not because they were not questioned nor restricted as much with regard to access to pain treatments, but because their diagnosis meant that an end to their suffering was, at least, in sight.
My mother suffered with severe chronic pain every day of her life from both her crippling arthritis, diabetic neuropathy and from lingering injuries from one of her several falls. She had trouble hearing and seeing. If not for the yeoman’s duty performed by my father, himself a cancer survivor but a surprisingly spry 84, Mark Zuckerberg and the Mets, her quality of life would have been abominable. But despite barely leaving the house other than a few visits to her doctors in the past few years she was loved and cared for and was passionate about Facebook and her Metsies. With regard to the former, I am not sure when Zuckerberg invented Facebook so Harvard hipsters could get dates, he might have envisioned what it would go on to mean to 84 year old shut ins who could barely hear or move. Her reach and presence in the online world was simply remarkable as I more fully appreciated after her death. And she would get up close to the TV on 124 volume and root, root, root for the Amazins, wearing a Mike Piazza jersey that more resembled a house dress.
My mother did everything she did well. She did it with devotion and persistence (ask people who received a birthday card every year for decades from her, even if they were still addressed to Master So-And-So, long since they were adults). What she and my dad could not ever seem to do in this same fashion was access pain care. Despite having a son who has been in the pain community for 30 years and who knows almost everyone – many of whom volunteered to see her – she simply didn’t have the time, the energy nor the moxy to be a pain patient the way she had been a mother, wife, grandmother, artist, secretary, friend or neighbor. She and my dad do not come from the generation of consumer-patients, the ones who feel entitled to service and demand care on their own terms. Add to this, their fears of addiction and it was hard to advocate for something they were themselves afraid might be bad for her. This despite having been at her best when taking OxyContin 10mg twice daily without incident for several years. It simply became too difficult to keep up the grind of visits and explanations and starting over and over as those willing to prescribe for her became fewer. I can imagine how her heart must have sunk when she walked into one of her Brooklyn internists’ offices a few years back and a hastily written sign in English and Russian taped to the door greeted her with “we do not proscribe OxiCotton (sic).”
Thus ended her pain care.
A woman with no risk factors for addiction could no longer get the one thing that worked best for her. She tried multiple other things, of course. In the end, she ate ibuprofen gel caps like candy. Her struggles were silent except to those close to her. My dad knew of course. I knew, as did my siblings. She kept her mind busy and distracted and this helped too. But her usual sunny disposition was often replaced by a phrase I heard only about a million times – “how are you Ma?” “I hurt” she’d say. I felt like a personal failure not being able to get the system to work better for her. I am pretty sure my father did too. The latter is a particular shame because his care of her was sterling and all that kept her alive for the past 6 years.
While every other day there is a story in the newspaper about the opioid crisis and the tragedies of heroin and prescription drug abuse, the silent suffering of so many goes on. My mother’s death will never get the attention of Prince’s or Phillip Seymour Hoffman’s or any other celebrity or suburban youngster who steals his grandma’s hydrocodone. It wasn’t lurid. It wasn’t sexy. It won’t sell newspapers. Screaming headline, “Little Old Jewish Lady Dies Quietly at Age 84!!!!!!”
Now that I am in mourning, I find the constant onslaught not only massive, lacking in perspective and unfair, but I now find it even more personally insulting that we as a society cannot put our heads together in a way that changes the healthcare system, stops trying to solve one healthcare crisis at the expense of worsening another and continually emphasizes the losses and tragedies of one side while not acknowledging the losses on the other. Insulted because the onslaught at best invalidates my mother’s suffering and that of millions (not to mention her experience of what worked to help it) and at worst actually contributed to it.
My mother’s death wasn’t the problem. Her later life was.
And that is why I am a Pain Advocate.
Guest Blog by Dr. Steve Passik in memory of his loving Mom.