Revisiting: “All I want for Christmas is NOT in a gift box”

by Carolyn Thomas     ♥    @HeartSisters 

My family tells me I’m “impossible” when it comes to picking out a gift for me. I am rarely able to offer them even a single helpful hint. Instead, I plead with them most years not to buy me “more stuff”.  I don’t want stuff. One only has to visit the average yard sale to witness the inevitable future graveyard of all that stuff. Bread machines. Chia pets. Exercise bikes. Any kind of candle. Aside from absolute necessities of life (like groceries or my paper crafting supplies), there are few things I now need, or even want.

Well, there are things I need and want, but hardly any of them come from a store or in gift boxes. I made a list of these last December – let’s revisit that list to see if Santa was paying attention.       

1.  2020:  “I really want my daughter-in-law Paula to have a safe, uneventful pregnancy and a healthy first baby due in early April 2021.  After years of painful challenges, Paula and my son Ben are cautiously thrilled about this miracle baby – perhaps Ben more so than Paula because he wasn’t the one who has spent four months puking. But things are looking up as she has gradually been able to keep food down and feel more like her usual perky self. She’s been such a trouper! We’re all keeping fingers crossed that she’s over the pukiest part now, and will enjoy a no-drama pregnancy from now on until we welcome this precious new baby in person this spring.”  2021 UPDATE:  “It’s a BOY!”  Zachary David Dunn was born on March 27, 2021, a second grandchild for me (his Baba), a fourth for Grandma MaryAnn, a sweet baby cousin for our Everly Rose, and the long-awaited precious first baby for ecstatically thrilled parents Paula and Ben. Baby Zack is a happy, healthy, adorable and hilariously funny almost-9-month old chatty charmer who will celebrate his first Christmas this month in the new home his parents moved into just this week (just seven blocks away from his Baba!)

2.  2020:  “I want the threat of COVID-19 to finally go away. I want my family and friends to stay healthy. And I also want people around me to wear their damn masks!”    2021 UPDATE:  Our family did not escape the virus (e.g. my brother, sister-in-law, and two of their three children). Viruses tend to mutate and the coronavirus responsible for this pandemic is no exception. We’re now facing the fourth wave of COVID-19. We know that unvaccinated people are currently five times more likely to be infected with the virus than the vaccinated, 11 times more likely to be hospitalized, and 26 times more likely to end up intensive care.  So you do the math and tell me if the threat of COVID-19 is going away any time soon.

Here on the west coast of Canada, we’ve actually seen massive anti-vax/anti-science/anti-government public protests blocking access to hospitals. HOSPITALS!!  Protesters seem to believe that vaccine and/or mask mandates threaten their constitutional right to do whatever the hell they want. (So does being forced to stop at red lights, or strapping your baby into a government-approved infant car seat). Meanwhile, since I wrote last December’s wish list, I’ve had two doses of the COVID-19 vaccine this past year, and am now booked for my third, a booster shot. That is truly remarkable scientific progress in such a short time in fighting a global virus that was unknown to science until recently.

3.  2020: “I want to see mandatory reporting of diagnostic error. When I was sent home from the ER in mid-heart attack with an acid reflux misdiagnosis – despite textbook heart attack symptoms of central chest pain, nausea, sweating and pain down my left arm – those who sent me home were not required to report this diagnostic error after I was later correctly diagnosed in the same ER. Medicine is the only occupation in which, when bad things happen to end users (aka patients), the only official response is to not talk about it. No need to document, no routine case review, no discussions at Grand Rounds, no opportunity to teach lessons learned to medical school students.  Meanwhile, we no longer have voluntary hard hat usage on construction sites or voluntary safety checklists by airline pilots before takeoff. That’s because other industries are light years ahead of medicine in considering adverse workplace events as serious issues affecting public safety.  Dr. Gordon Schiff, at Boston’s Center for Patient Safety Research at Brigham and Women’s Hospital, recommends “a national database in which patients and physicians could detail the onset of symptoms, when the diagnosis was made, whether it was found correct, and if not, why not, and all that followed so learning could advance outside the arena.”(1)

2021 UPDATE:  So far, no national database.  In October 2021, a Harvard-based team of researchers reported that “the COVID-19 pandemic has further strained the healthcare system, resulting in cognitive errors, burnout, challenges with hospital resources, and a rapid shift in operational workflows that may have contributed to missed and delayed diagnoses.”(2)  This pandemic-related strain was identified in 45 per cent of the reports identified as diagnostic error or delay. Part of the solution to diagnostic error must be to foster a culture that recognizes patient safety challenges and implements viable solutions – instead of harboring a culture of blame, shame, and punishment.

4.  2020:  “I want physicians to listen to women when we tell them we’re sick. Despite ongoing research confirming a pervasive gender bias throughout medicine, including in cardiology, many docs appear to be dismissive and even downright offended by the accusation that such bias exists. See also: “There Is No Gender Bias in Medicine. Because I Said So”   2021 UPDATE:  We need only to look at the most recently published report on the gender gap in cardiology, in this month’s edition of the American Journal of Preventive Cardiology, called Addressing the Bias in Cardiovascular Care:  Missed & Delayed Diagnosis of Cardiovascular Disease in Women.(3)   Some shocking background facts leaped out at me from this AJPC publication (besides the most discouragingly obvious one – that I’m essentially reading the same conclusions in hot-off-the-press publications that I was reading 13 years ago). For example:

“Only 22% of primary care physicians and 42% of cardiologists felt adequately prepared to assess cardiovascular disease risk in women.

“In women with cardiovascular disease, there are continued sex disparities in their diagnosis, treatment and management, resulting in worse outcomes for women compared to their male counterparts. As a result, we continue to see higher mortality rates and re-hospitalizations in women than in men.”

5.  2020:   “I want to see more people giving the gift of life. Become a regular blood donor. Register to be an organ donor. Support your local hospital’s COVID-19 fund. Donate to Doctors Without Borders (Médecins Sans Frontières)whose mission is to provide life-saving medical humanitarian relief. My own family physician spent 14 years of her career working overseas with this amazing non-profit organization, which I’ve always thought says a lot about her as a person compared to my (now former) family doc who opened up an all-cash Botox clinic within her family practice. Meanwhile, important grassroot groups have taken a catastrophic funding hit this year because of the pandemic. Please consider helping them.   2021 UPDATE: According to The Giving Report from Canada Helps, overall charitable donations in the past year declined again, yet online giving increased.  If you have a favourite local non-profit whose work you appreciate, this is the time to let them know how much by donating what you can.

This year, I’d like to add one more wish for a Christmas gift that doesn’t ever come in a gift box:

6.  2021:  “I want the diagnosis of “heart FAILURE” to get a new name.”  I don’t care what the new name is, I just want doctors to stop telling heart patients with a straight face as if they don’t hear the words they’re actually saying out loud:  “You have heart FAILURE!”   See also: “Would You Drive Your Car if its Brakes were “Failing?“

As the late great pioneer cardiologist Dr. Bernard Lown often warned his colleagues, doctors shouldn’t ever deliberately use words that hurt.  Some heart failure clinics have already begun this change. Where I live, three of our regional hospitals now have renamed their Heart Failure Clinics as Heart FUNCTION Clinics.  That’s a start. The clinic names, the signage, the conference and medical journal names (e.g. “The Journal of Cardiac FAILURE”) – all of them MUST change.  Yet I know that none of those changes will matter if the words doctors continue to use when announcing this diagnosis to their patients are still “You have heart FAILURE.”   See also: ““Is It Finally Time to Change the Name ‘Heart FAILURE’?

I’ve been lobbying for this correction for years, along with a growing number of thoughtful cardiologists, I’m happy to say. Harvard cardiologist Dr. Lynne Warner Stevenson, for example, also wants to see the end of the name heart FAILURE:

     “We have to call it something else! The term ‘heart failure’ denotes a hopeless defeat that may limit our ability to encourage patients to live their lives. Words are hugely powerful.”

The reason for NOT changing this dreadful name seems to be some variation of “This is what it’s always been called” – a feeble excuse indeed.  Yet heart FAILURE is itself the replacement name for its older name, “dropsy”. We have many examples in medicine of disease names that have changed over the years when deemed to be no longer appropriate (stroke was once known as apoplexy;  tuberculosis used to be called consumption;   HIV/Aids was GRID (Gay-Related Immune Deficiency – even though about half of the people diagnosed with the syndrome were NOT gay). And scientific journal publishers can and do change the names of their journals when they want to (e.g. Behavior Analyst is now Perspectives on Behavior Science, BMC Genetics is now BMC Genomics, etc. etc. etc.)  

I’m hoping that Santa will deliver some good news by next season. . .

♥

Meanwhile, whatever you find under your own tree this Christmas, and no matter how different this year’s holiday season may feel compared to any other year, I hope you’ll take many moments to enjoy the magical lights, sounds, traditions and spirit of what you enjoy about this special season with those you love.

Take care, and please stay safe this holiday. . .

♥

1. Newman-Toker DE et al. “Rate of diagnostic errors and serious misdiagnosis-related harms for major vascular events, infections, and cancers: toward a national incidence estimate using the “Big Three.” Diagnosis (Berl). May 14, 2020.

2. Lin Shen et al. “Harnessing Event Report Data to Identify Diagnostic Error During the COVID-19 Pandemic“,
The Joint Commission Journal on Quality and Patient Safety, 2021.

3. Heather M. Johnson, Celina E. Gorre, Amy Friedrich-Karnik, Martha Gulati, “Addressing the Bias in Cardiovascular Care: Missed & Delayed Diagnosis of Cardiovascular Disease in Women“,  American Journal of Preventive Cardiology, 2021.

Q:  Is there something on your own wish list this Christmas that doesn’t come in a gift box?

♥

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NOTE FROM CAROLYN:   Speaking of grandbabies. . . on the dedication page of my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press), I wrote this to my granddaughter:

      “To my darling grandbaby, Everly Rose: On the day you were born, one of my Heart Sisters blog readers predicted, ‘This precious little child will do more good for your heart than anything your cardiologist could ever prescribe for you.’  She was right!”

This book is available at your local library or favourite bookstore (please support your local neighbourhood shops!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press (and use their code HTWN to save 20% off the list price).