Understanding Dax Cowart’s Case and the Limitations of Snap Judgements Regarding Quality of Life

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CE Binkley et al. NEJM 2022; 387: 1325-1328. From the Eyeball Test to the Algorithm — Quality of Life, Disability Status, and Clinical Decision Making in Surgery

“Good surgeons know how to operate; better surgeons know when to operate. But only the wisest surgeons know when not to operate.”

Key points:

  • “Qualitative evidence concerning the relationship between QoL and a wide range of disabilities suggests that subjective judgments regarding other people’s QoL are wrong more often than not1,2 and that such judgments by medical practitioners in particular can be biased.3,4 “
  • “Physicians had treated the severely burned patient Dax Cowart against his express and capacitated refusal of treatment.8 Cowart’s refusal was based in part on his judgment that if he survived, his QoL would be such that death was preferable. His physicians, on the other hand, believed it was their ethical duty to preserve his life regardless of his assessment of its quality. Cowart’s case was one of the first to highlight the importance — ethically, not just medically — of letting the patient’s own QoL valuation guide surgical decision making.”
  • When physicians do not offer a treatment due to concerns about potential QoL concerns, the “patient may never know that surgery was a possibility because the surgeon dismissed it as not indicated and never offered it.”
  • “In a recent survey of practicing physicians in the United States, 82.4% of 714 physicians indicated their belief that people with significant disability (as defined by the study) have worse QoL than people without disabilities.3 Yet this judgment directly conflicts with a large body of social science research spanning decades suggesting that people with significant disability, like those with less severe disability, experience QoL that is similar to that of people without disabilities.1,14-17 “
  • “We are not advocating that surgical interventions should be offered indiscriminately. Rather, we believe that a patient’s candidacy for a proposed treatment should be based on an objective assessment of the likely outcome of the treatment and the value that the patient, rather than the physician, places on that outcome, rather than on a flawed intuitive assessment.”

My take: The authors make a compelling argument that treatment recommendations need to be based on more than a physician’s subjective assessment of a patient’s quality of life.

Related blog posts:

Chicago Botanic Garden

Briefly Noted: Avoid Food Sensitivity Testing, Physician Burnout Worsening and Apple Medication Tracker

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NY Times (9/13/22): Is Food Sensitivity Testing a Scam?

Key points:

  • According to Dr. David Stukus, director of the Food Allergy Treatment Center at Nationwide Children’s Hospital in Columbus, Ohio, the term food sensitivity is used more in marketing than in medicine. “There really is no consensus definition of what a food sensitivity is,”…A food intolerance or sensitivity is different from a food allergy, Dr. Stukus said, which is an immune reaction to certain foods that can cause more severe symptoms like vomiting, hives, shortness of breath or even life-threatening anaphylaxis, usually within minutes of eating even a small amount. There are also more chronic immune reactions to foods, like those from celiac disease, a serious autoimmune condition triggered by gluten.
  • Aside from the breath tests that gastroenterologists sometimes use to diagnose certain intolerances, like those to lactose or fructose, there aren’t validated tests for food intolerances or sensitivities… The only way to figure out if you are sensitive to certain foods or ingredients is to see how your symptoms change after eliminating them from your diet, ideally with the help of a registered dietitian or physician
  • Medical organizations, including those in the United States, Europe and Canada, have recommended against using food sensitivity or intolerance tests because there is no good evidence that they work.

Related blog posts:

NY Times (9/29/22): Physician Burnout Has Reached Distressing Levels, New Research Finds This article reports on a survey from the Mayo Clinic Proceedings. The research is limited by a low response rate by mass email and likely selection bias.

Related blog posts:

WSJ (9/10/22) (Behind Pay Wall) Apple’s Medications Reminder Is Coming in iOS 16. Here’s How to Use It. And from 9to5Mac (9/20/22): Track medications and supplements on iPhone: How the new iOS 16 feature works (lots of pictures on this website)

Track medications on iPhone: iOS 16 guide

  1. Running iOS 16 on iPhone, open the Health app
  2. Choose the Browse tab in the bottom right corner
  3. Tap Medications, then choose Add a Medication
  4. Use your camera to scan your medication or type it in manually (Apple says scanning will be limited to US users for now)
  5. Follow the prompts to set reminders and more
  6. Head back to the Health app > Browse tab > Medications any time to log what you’ve taken and more

Newsflash Articles: Untreated Eosinophilic Esophagitis Worsens and the Severely-Damaged Esophagus Does Not Work Well

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NC Chang et al. Clin Gastroentol Hepatol 2022; 20: 1701-1708. Open Access! A Gap in Care Leads to Progression of Fibrosis in Eosinophilic Esophagitis Patients

In this retrospective review with 701 patients, 95 (14%) had a gap in care (mean time without care, 4.8 ± 2.3 years). Key findings:

  • Patients post-gap had higher endoscopic severity (2.4 vs 1.5; P < .001) and smaller esophageal diameters (11.0 vs 12.7 mm; P = .04).
  • Strictures were more prevalent with longer gap time (P < .05 for trend). Each additional year of gap time increased odds of stricture by 26%, even after accounting for pre-gap dilation. Additionally, of 67 patients without pre-gap fibrosis, 25 (37%) had at least one fibrotic feature (stricture, narrowing, or requiring dilation) post-gap.

DA Carlson et al. Clin Gastroenterol Hepatol 2022; 20: 1719-1728. Esophageal Dysmotility Is Associated With Disease Severity in Eosinophilic Esophagitis

Consecutive adult patients with EoE (n=199) completed a 16-cm functional luminal imaging probe (FLIP) during endoscopy were evaluated in a cross-sectional study. Key findings:

  • Mucosal eosinophil density was similar between abnormal contractile responses (CRs) and normal CRs (median 34 vs 25)
  • Abnormal CRs more frequently had reduced esophageal distensibility (distensibility plateau <17 mm in 56% vs 32%), with more severe ring scores, and a greater duration of symptoms (median, 10 y vs 7 y)

Thus, abnormal esophageal CRs were related to EoE disease severity, especially features of fibrostenosis. This study suggests that esophageal wall remodeling, rather than eosinophilic inflammatory intensity, was associated with esophageal dysmotility in EoE.

My take: Despite my satirical title, I think these articles are helpful by documenting that ongoing EoE results in worsening esophageal dysfunction/dysmotility (especially if not treated). In addition, they provide insight into the natural history/pathophysiology of EoE.

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Near Seward, AK. Sea lions and birds flock to this island

IBD Updates: Built-in Infliximab Dosing, Pouchitis in kids, PIBD Symposium & Aspen Meeting

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Heads up! Next year’s Aspen Pediatric GI Meeting will be July 10-14 -terrific learning experience and opportunity to mingle with some exceptional leaders in our field:

MC Dubinsky et al. Inflamm Bowel Dis 2022; 28: 1375-1385. Dashboard-Driven Accelerated Infliximab Induction Dosing Increases Infliximab Durability and Reduces Immunogenicity

In this prospective ‘real-world’ study (adults and children), “cumulative data from each infusion (INF), weight, albumin, C-reactive protein, IFX dose, IFX trough level, and antidrug antibody presence were used to inform subsequent INF dosing.” Key findings:

  • 69% of patients (n=180) required accelerated dosing by the 4th infusion dose. In addition, median dosing intervals were accelerated by ~2 weeks for the 3rd infusion and ~4 weeks for the 4th infusion
  • The authors report only 6% did not receive a 4th infusion. This early treatment failure rate is much lower than prior studies.
  • 123 of 180 remained on infliximab at week 52 (~32% failure rate); however, this rate is overestimated as there were 26 patients who were not considered failures but were changed to home infusions, moved or lost to followup.

My take: The 8-week interval between induction dose (3rd) and maintenance dose (4th) is too long for many pediatric patients. For those using proactive therapeutic monitoring, checking a level prior to 3rd dose should be considered. Using an automated dosing system (like “iDose”) is likely to be helpful in optimizing response. Current target levels for TDM noted in recent post: Selected Slides from NASPGHAN 2022 Postgraduate Course (part 2) & copied below.

E Cowherd et al. Inflamm Bowel Dis 2022; 28: 1332-1337. The Cumulative Incidence of Pouchitis in Pediatric Patients With Ulcerative Colitis

Methods: Within the IQVIA Legacy PharMetrics Adjudicated Claims Database, the authors identified pediatric patients (n=68) with UC who underwent proctocolectomy with IPAA between January 1, 2007, and June 30, 2015. Key finding:  In the first 2 years following IPAA, the cumulative incidence of pouchitis was 54%. My take: Most patients continue to experience significant problems after “curative” surgery.

The 6th International Symposium on Peadiatric Inflammatory Bowel Disease (PIBD) was held on September 7-10, 2022, in Edinburgh, Scotland. Highlights of several featured presentations (including video presentation on exposome) regarding the latest updates on nutrition and diet are included at this link (courtesy of Nutritional Therapy for IBD website): PIBD Symposium 2022 Nutritional Highlights

Near Denali, AK

Disclaimer: This blog, gutsandgrowth, assumes no responsibility for any use or operation of any method, product, instruction, concept or idea contained in the material herein or for any injury or damage to persons or property (whether products liability, negligence or otherwise) resulting from such use or operation. These blog posts are for educational purposes only. Specific dosing of medications (along with potential adverse effects) should be confirmed by prescribing physician.  Because of rapid advances in the medical sciences, the gutsandgrowth blog cautions that independent verification should be made of diagnosis and drug dosages. The reader is solely responsible for the conduct of any suggested test or procedure.  This content is not a substitute for medical advice, diagnosis or treatment provided by a qualified healthcare provider. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a condition.

Glaring Omission in Pediatric Healthcare

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This weekend The Atlanta Journal-Constitution (AJC.com) ran a front page, top-of-the-fold, story of how Georgia’s mental health system is failing kids. This story highlighted how Children Healthcare of Atlanta is building a $1.5 billion 14-story state-of-the-art hospital that will not have a single psychiatry bed. Coincidentally, the NY Times 18-page opinion section also focused on America’s mental health crisis.

Related article from AJC (Dec 2021): Children’s Healthcare of Atlanta amasses immense wealth as some Georgia families struggle to access quality pediatric care

My take: Mental health issues are clearly NOT prioritized in many health care systems/providers nor by payers.

Related blog posts:

Selected Slides from NASPGHAN 2022 Postgraduate Course (Part 2)

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See previous post for lecturers

Oral small molecultes in IBD. Anne Griffiths, MD
Judith Kelsen, Very early onset IBD
VEO Evaluation
VEO Treatments
Jeremy Adler and Treat to Target for IBD
Jeremy Adler and Treat to Target for IBD
Jeremy Adler and Treat to Target for IBD
Jeremy Adler and Treat to Target for IBD
Jeremy Adler and Treat to Target for IBD
Timothy Sentongo and Growth and Nutrition Issues in the NICU
Maureen Leonard and Gluten-Related Disorders Update
Maureen Leonard and Gluten-Related Disorders Update
Maureen Leonard and Gluten-Related Disorders Update
Maureen Leonard and Gluten-Related Disorders Update
Rachel Rosen and Esophageal Motor Disorders
Katja Kovacic and Functional Nausea
This study was 20 yrs ago -we can do better today

Disclaimer: This blog, gutsandgrowth, assumes no responsibility for any use or operation of any method, product, instruction, concept or idea contained in the material herein or for any injury or damage to persons or property (whether products liability, negligence or otherwise) resulting from such use or operation. These blog posts are for educational purposes only. Specific dosing of medications (along with potential adverse effects) should be confirmed by prescribing physician.  Because of rapid advances in the medical sciences, the gutsandgrowth blog cautions that independent verification should be made of diagnosis and drug dosages. The reader is solely responsible for the conduct of any suggested test or procedure.  This content is not a substitute for medical advice, diagnosis or treatment provided by a qualified healthcare provider. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a condition.

Selected Slides from NASPGHAN 2022 Postgraduate Course (Part 1)

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Pediatric Foreign Body Ingestions
Esophageal Strictures
Esophageal Strictures
Imaging for Acute Pancreatitis
Imaging for Acute Pancreatitis
For Acute Liver Failure
For Acute Liver Failure
For Acute Liver Failure

Disclaimer: This blog, gutsandgrowth, assumes no responsibility for any use or operation of any method, product, instruction, concept or idea contained in the material herein or for any injury or damage to persons or property (whether products liability, negligence or otherwise) resulting from such use or operation. These blog posts are for educational purposes only. Specific dosing of medications (along with potential adverse effects) should be confirmed by prescribing physician.  Because of rapid advances in the medical sciences, the gutsandgrowth blog cautions that independent verification should be made of diagnosis and drug dosages. The reader is solely responsible for the conduct of any suggested test or procedure.  This content is not a substitute for medical advice, diagnosis or treatment provided by a qualified healthcare provider. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a condition.

What’s in Your Gut and How to Change It

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W Turpin et al. Gastroenterol 2022; 163: 685-698. Open access! Mediterranean-Like Dietary Pattern Associations With Gut Microbiome Composition and Subclinical Gastrointestinal Inflammation

As part of the Genetic, Environmental, Microbial (GEM) Project, the researchers recruited a cohort of 2289 healthy first-degree relatives of patients with Crohn’s disease. Diet was assessed with a food frequency questionnaire. Key finding: A Mediterranean-like dietary pattern is associated with microbiome (increased Ruminococcus, as well as taxa such as Faecalibacterium) and lower intestinal inflammation.

L Zhao et al. Gastroenterol 2022; 163: 699-711. Open Access! Uncovering 1058 Novel Human Enteric DNA Viruses Through Deep Long-Read Third-Generation Sequencing and Their Clinical Impact This study discovered 1058 novel human gut viruses, and these findings can contribute to current viral reference genome, future virome investigation, and colorectal cancer diagnosis. From the editorial: “Previous literature also identified virome signatures associated with certain diseases, such as colorectal cancer14 or inflammatory bowel disease,15 such that a better understanding of the viral dark matter may be used to develop biomarkers to identify individuals at risk or even to influence gut physiology.”

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