…and that is why I am a pain advocate

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shalomThe Painful Later Years of Frances Passik
Born 1/10/32
Died 9/14/16

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!!!!!!”

passik-familyNow 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.

36 thoughts on “…and that is why I am a pain advocate

  1. So sorry to hear of your mother’s needless suffering prior to her passing.
    As an intractable pain patient who has lived with the nightmare of RSD/CRPS for more than a decade I can empathize.
    As a result of the CDC’s imbecilic 2016 opioid guidelines I lost all access to any pain management for a period of about eight months. Eight months of absolute hell well above and beyond the daily hell that is RSD/CRPS even with opioid medication.
    When I was finally able to regain access to pain management my opioid allowance was reduced to less than a third of what would be a meaningful therapeutic dosage.
    This gross overreaction to the epidemic of illicit fentanyl and heroin and the catastrophic effect it is having on the intractable pain and rare disease communities is beyond barbaric.
    My thanks to you for your efforts in advocating for those needlessly suffering as a result of these barbaric anti-opioid policies.

  2. Oh, Doctor, Your story and my own are almost identical. The exception is that I myself have inherited my mother’s diseases and am now on my way to being bedbound as well thanks to our wonderful government. I’m so very sorry. My mom who was terribly undertreated for pain had bleeding ulcers. She also had Lupus, Sjogrens, RA, an “orphan” secondary autoimmune disease, and CVID -Primary genetic immune deficiency that I’m sure is and was the base for all the autoimmune diseases. My mom became desperate when my dad took the ibuprofen and excedrin away because of her stomach. As I’m sure you know, Lupus and other autoimmune diseases can target the liver. She got Tylenol then to go with the 2 Lortabs a day her Primary gave her. She was bedbound and twisted in body and pain. She never drank alcohol EVER. My mom died a horrible death of liver failure from desperately over downing Tylenol wishing and praying that THIS time it would help. There is no heartbreak like watching your parents in pain. (HUGS)

  3. Just reading this in 2018 — so sorry for your Mom, Dad, you and the rest of your family. What a tragic and unnecessary path to a beautiful end of life.

  4. Dr. Fein, SO terribly sorry to hear about the horrendous pain your mother suffered through most of her life and certainly towards the end. I’m reading this on a date when I, as a chronic pain patient, again found a door slammed in my face to obtain the standard of care in controlling my pain and providing me a quality of life that I have been used to the last few years. My goal was to be able to take a trip on an airplane. Of course, that won’t happen now with the CDC guidelines. When I get down to the level of drugs that they want me to have, I will be bedridden. MUST WE PROVE OURSELVES INNOCENT?

  5. Steve, reading this today, on Yom Kippur, I hope you are finding comfort in the support of family and friends to ease your grief. Indeed, heartbreaking to lose one’s mother, gut-wrenching to be in the ironic position of sentience as you’ve been. Bravo to you for sharing this personal story and letting it fuel your work.
    With love and respect,
    Nedra

  6. Steve,
    Thank you for sharing the story of your amazing mother. May this difficult experience add even more fire to your passion for helping people who suffer from chronic pain.My thoughts and prayers are with you and your family during this sad time.

  7. Steve, what a beautiful tribute to your mom and a testament to your tireless, selfless, abundant care and concern for pain sufferers. I hope you are able to advance the agenda so that more people who are in desperate need and deserve dignity and a better way of life receive that. It’s a complex problem that will require a nuanced and reasoned approach, not to mention eloquent and passionate advocates like yourself. Thank you for sharing this and for your work!

  8. Jeff

    Thank you so much for running my blog about my mom. It was really therapeutic for me to channel my emotions through honoring her. In addition, she would have loved the fact that the telling of her experience had a positive impact on so many people.

    And to all who commented here and/or sent me email, texts or took the time to call, I want to thank you from the bottom of my heart and on behalf of my family. As I have gone through the last 2+ weeks since my mom has been gone, your remarks have meant the world to me and my family; truly a source of support that I/we will never forget.

    Steve

  9. What a wonderful story about your Mom and your family. It is sad that she was made to suffer in her last years of life. That is what the government is doing to all chronic pain sufferers! All of you will be in our thoughts and prayers. Thank you for all the hard work you are doing to help the pain patients and being such a caring advocate for all of us!

  10. Steve,

    What a wonderful tribute, thank you for sharing. My thoughts & prayers go out to you, your family, and to all those that are suffering from or supporting those with pain.

    Kathy

  11. Steve,

    How like you to find a way to use your mother’s difficult final days to inspire us. This beautiful tribute goes beyond merely explaining why I must wake up tomorrow determined to treat pain – it strengthens my resolve. You, sir, are indeed a pain care advocate. You’ve made your mom proud again.

    May you and your family soon find peace in these coming days.

    – Pat

  12. I didn’t know your mom, nor do I know you. Your post caught my attention on Facebook. Like your mom, it is my link to the world on too many days. When I saw the title, I had a fleeting hope that you had the answer for chronic pain. I have walked in these shoes for several years now. I have severe fibromyalgia and osteoarthritis, which necessitated a knee replacement at 52. Your mother is an inspiration to me. I pray that I continue to live my life with passion and zeal to the very end as did your mom even though when my husband asks how I feel, I say, “I hurt.” God bless you and your family.

  13. Sincere condolences to you and your family. I must agree that this tribute to your dear mother elucidates the reality for the patient suffering in pain and how they are failed more fully than anything I’ve read before. I do hope that your tribute is published and seen by many eyes, and penetrates many hearts.
    Your message is such an important one representing all chronic pain patients, especially the largely invisible ones, like our elderly and veterans who suffer virtually in silence. For me, the right to privacy is where we find the answer. Patients who are informed and accept the risks of treatment along with their treating physicians should not be interfered with, plain and simple.
    Patients suffer waiting for new treatments and it’s awful, but we already have safe and effective treatment for pain, so says the FDA in approving these drugs. And we will keep pushing and fighting for safe and effective treatment of our pain, as would any other group of sick people having treatment withheld ( though it’s hard to imagine when else this would ever be!). The shame is we can be written off as addicts, and here is what we must solve.
    All the best to you and thank you for your voice.

  14. My sincerest condolences to you, your father, and your family. You’ve described the tragedy and fear of living in chronic pain, particularly in later life. Her experiences, so common in the U.S., shaped your professional perspectives and understanding of this insidious co-morbid disease. People of every age need pain relief, and to intentionally withhold it is torturous and barbaric. The many layers of what’s wrong and must be changed with how pain is perceived and treated needs strong advocates like you. Thank you for speaking for all of us with pain through this well written tribute to your mother.

  15. Dear Dr. Passik,

    A moving and inspiring tribute, thank you for sharing these words that should spur us all to do more in managing pain safely and comprehensively, with and without opioids.

    Condolences on your loss.

    Dr. Beth Hogans, M.D., Ph.D.

  16. Steve,

    That’s as close to “saying it all” as I’ve ever read.
    Bet you did it in practically one sitting.

    My condolences to your dad, you and the family.

    Regards,

    Frank

  17. What a beautiful statement of the truth of the matter. My condolences to you and your family.

    I have been in chronic pain for over 30 years. I hope I go very fast when my time comes.
    I believe in pain management and the “Right to Die”.

    It is worrisome that somebody whether it be the government, a group or an individual has a vote if we have pain management or not plus other personal medical choices. The vote is caste many times without knowing you and your wishes.

    Steve, you are a good man and your remarkable mother was lucky to have you as a son.

    Peace to all! .

  18. Steve – thank you for sharing this heartfelt, beautifully written tribute to your Mom. I am so sorry for her struggle and everyone’s loss. You and your family remain in my thoughts and prayers. I hope that your advocacy for pain management will be a comfort to you, your family and the many pain patients in need.

  19. Steve,
    Thanks for sharing your Mother’s pain mgmt. journey. My thoughts and prayers are with you and your family. Thank you for your continued fight and advocacy for the chronic pain patient

    George

  20. Your mom was a rock and you were amazing to her. Despite everything – She never let her smile wane and even to her distant relatives she shared her heart and love with all of us. Aunt Fran was a light for us – and We feel her loss everyday. I am hugging you all from here. These were very important words. Love you all!

  21. What a sweet article, touching story and such a clear telling of how everyone is affected when a family member is in pain. It shouldn’t be so hard for our seniors who are suffering. She deserved to have comfort. How did that become so wrong?????
    Thank you Steve for being a wonderful advocate. It is insulting that you had to hear from your beloved mom..I hurt. For no good reason. And nothing you or your dad could do to make it better. You did the best you all could. What a beautiful soul and a wonderful son you are.
    Thank you going forward….

  22. Thank you Steve for eloquently sharing your deeply personal story. I’m very sorry for your loss and my thoughts and prayers are with you and your family during this time of mourning. Thank you for all you do to ensure people suffering from chronic pain are not forgotten. You wrote “My mother did everything she did well.” and knowing you…being a great parent and role model was high on that list.

  23. A wonderful tribute to your mother and to the pain community. Thank you for sharing this Steve. Thoughts and prayers for you and your family.

  24. Mothers are vital to the survival of the human species; and in particular to those of us who are sons.
    Mothers are our first “home”. We live rent free for about 9 months then come up crying into the uncertain outside world. Mothers love us…. unconditionally.. ( I mean Jewish mothers here). This allows us to grow up and becoming loving caring independent effective and only slightly insecure and guilt ridden psychiatrists and psychologists.
    The world is always poorer when a mother dies.
    The world shed tears for Frances Passik. Steve, his brother, father, sister, and Sofia all shed tears. A profound loss.
    I was lucky enough to have met Frances. She was a magnificent woman and an amazing loving mother. She remains a beautiful soul always.
    S

  25. Your Mom leaves a legacy of passion and moxie clearly evident in you, dear Steve. Stay strong, be healthy, and continue to make us learn, laugh, and touch meaningfully!
    Love and hugs to your entire family from mine…Jasmin

  26. Thank you so much for sharing this Steve. My thoughts & prayers continue to go out to you, your family, and to all those that are suffering from or supporting those with chronic pain.

  27. I am very sorry for your loss. Steve, every mother should have a son like you. My thoughts are with you during this sad time.
    Myra

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